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Mom's entry 11/29/11I hope everyone had a wonderful Thanksgiving and realized how very lucky we are to have each other. Everyone is doing well here. I needed to share that Brynn has been chosen to be the Girl of the Year for the Eastern PA Man and Woman of the Year campaign. The Boy and Girl of the Year are chosen to help inspire this 10 week fundraising effort when one man and one woman are chosen to fundraise and raise as much money as they possibly can. Brynn's story will help inspire this fundraising effort. We're honored and Brynn is starting to finally realize the magnitude of her survivorship. We're very proud of her! She filled out the bio and paperwork last night. The campaign kicks off in February and ends in April. 11/29/2011
Mom's entry 10/18/11So, for those of you doing the math, I've miscalculated. Brynn has been off therapy now for 4 years and is 6 years out from the date of diagnosis and remission. All of this though, huge milestones and Wednesday being Brynn's first visit and transition to the Survivor Clinic. It was a great day for all of us. Was surreal being back at CHOP, we actually couldn't remember the last time we were there. We met first with the Survivor Clinic Nurse Practitioner. She was wonderful. First thing she said was "We're not looking at Brynn anymore as a kid who had cancer, but a normal nine year old girl." She had her entire chart sitting there and she said there was nothing there that caused them any concern or worries that she'll have any kind of late effects. She received such low doses of the big chemo medications, that the risk to her heart and ovaries is so low. They'll only do echocardiogram and EKG every five years and other than bloodwork and physical exam every year, that's it. Bloodwork was a bit hairy. Brynn was so nervous she almost passed out during the blood draw. Caused a bit of excitement in the lab room, but she got through it like she always does. Then, we met with someone from nutrition which was very helpful to help understand the eating habits of some kids that go through treatment and some suggestions to overcome some of it. We were on our way by 2:00 and the rest of the day was just fun. I love you girl. I'm so so proud of you. 10/28/2011
Mom's entry 10/11/11I ran the Steamtown Marathon this past Sunday 10/9 - in honor of Brynn's struggles and her victory over cancer. Saturday night prior - I delivered this speech to the Team in Training Participants. I was honored to do it. Was a great weekend - even though I still cannot maneuver stairs normally. :) I am honored to be here tonight with my family and amongst a room of Team in Training Athletes. Team in Training holds a very special place in my heart. Team in Training came into my life at a time where I was filled with anxiety and fear. Fear of the unknown, uncertainty for the future, and a time when I felt physically beaten down. I received a pamphlet for Team in Training in the mail towards the end of my daughter's treatment for Leukemia. I would like to share her story with you now. On August 26, 2005, my sweet daughter, Brynn, who was 3 ½ years old, was diagnosed with Acute Lymphoblastic Leukemia. This diagnosis came after months of being at the pediatrician for 'viral type illnesses' and unknown fevers. The final breaking point had been on our first family vacation to Ocean City, Maryland – where Brynn experienced yet again another fever and began limping. Upon our return home, I was running my fingers through her hair the one evening, and I felt swollen lymph nodes all over the back of her head. That triggered an appointment to the pediatrician's office the next day, which led to blood work, and finally a call asking us to take Brynn to Children's Hospital of Philadelphia for more blood work. I think we spent most of the day in the ER that day until a tentative diagnosis was given to us of leukemia. The final diagnosis came a few days later after a bone marrow biopsy and spinal tap. Even as I speak these words 'Acute Lymphoblastic Leukemia' almost 8 years from that time, it doesn't seem possible. No parent should ever have to receive this news. No words can describe the pain and devastation, the shock, the questions, the anger – the multitude of emotions and feelings. There was something my husband wrote on Brynn's website that I truly believe carried me through her years of treatment. He wrote: "We arrived at the Emergency Room at CHOP. We went over everything that had been happening, with the nurse, and then a Doctor, and then another Doctor. And we waited. And when the Doctors finally came into our room, they brought a social worker with them. I will never forget that. There was no more speculation. The fact was that our lives had been silently changing for weeks. That silence was over now, and the first day of Brynn’s recovery had arrived" "The first day of Brynn's recovery had arrived". That was the most powerful statement to me at the time when I was consumed with fear. I knew he was right – it was not an end – it was a beginning. Brynn's course of chemotherapy was for two years and two months. As you can imagine, those two years and two months, were really indescribable from a treatment and suffering perspective. However, what I can describe vividly to you is Brynn's strength, her courage, her determination to win – without even knowing she NEEDED to win. We learned daily from her how to overcome fears, how to rise above inadequacies, and how to love more than our hearts were capable of. The strength we have found as a family is one of the many positives we have taken from our experience with blood cancer. And I can't say enough to my daughter Paige – she has been a bright shining star to all of us throughout this journey. I never could have made it without every piece of our Henry family puzzle. There was a day, that Brynn was terribly sick from her chemotherapy, she was sick and vomiting, and she always knew when I was having a bad day or a 'worried day' and she just looked at me and said, "Mommy, tomorrow is a new day." Again – another statement that I carry with me through so many of my days. I signed up for a Team in Training event after receiving that pamphlet in the mail. I trained for my first half marathon, completed the event with a new strength and confidence that I probably wouldn't have had without doing it. It helped me in so many ways rechannel my anxiety and my fears into hope for a wonderful future and dedication to a group that is helping to save so many lives. My daughter's life. Brynn will be celebrating her five year anniversary off chemotherapy this month on October 26th. This date has become a second birthday each year as she remains cancer free each year out of therapy. As she crosses this finish line, you all will cross the Steamtown Marathon finish line – hopefully, in part for her too. I celebrate all of you for your efforts, your fundraising, your training, and your commitment to this group. We have been in direct receipt of the efforts and generosity of the Leukemia & Lymphoma Society, so you too – are heroes. Run strong, have fun, be safe, and just keep doing what you're doing. You've trained hard, you know everything your coaches have taught you, you're ready for this. Every one of your efforts is recognized and appreciated. My family thanks you and Team in Training thanks you. And remember, when we're ready to stop and think we can't go one more mile, and our quads are burning, and there's no steam left in the tank", tomorrow will be a new day"! Thank you and GO TEAM! 10/11/2011
Mom's entry 9/7/11I scheduled Brynn's Five year off therapy appointment at the Survivor Clinic at CHOP on October 26th. This is the actual anniversary date of her diagnosis 7 years ago - I can't even believe that amount have time has gone by. We'll spend most of the day there and all of the tests that are usually done at different time in King of Prussia, will be done in one day. I'm sure we'll go out to dinner and have a quiet celebration for our family.9/7/2011
Mom's entry 7/3/11I'm not sure if anyone even checks this website anymore - I guess that's a good thing. :) Brynn had her 4 1/2 year off therapy visit last month. She's doing great - continues in remission. These visits are getting hard for Brynn - I think because she doesn't remember much anymore (also a very good thing) about her treatment and these twice a year visits now are a little bit of a reminder - but mostly she's so scared of the needle to draw the CBC. This time wasn't so bad and she got a big smile on her face when the nurse told her it was just a finger stick. NO big needle this visit. PattiAnn did her exam this time and was so nice to talk to her. At this point, Brynn really should be transferred to the survivor clinic at CHOP. We discussed how important it is for Brynn to be seen by the survivor team who looks at her whole treatment regimen and watches for late effects, etc. Also helps the oncology team to determine which kids maybe got too much chemo and how they can improve outcomes for kids. Brynn, of course, does not want anything to change - her usual control over keeping things the same. We'll most likely be down at CHOP in October for her five year check. Otherwise, she had a great year in school, as did Paige. We continue to volunteer for Team in Training with the Leukemia & Lymphoma Society and continue to live life everyday in appreciation for everything we have. We've been very blessed. 7/3/2011
Mom's entry 12/3/10Brynn had her eye appt. at CHOP on Monday. Her vision is perfect and there is no leukemia within the eye itself. So, another clearance that our girl is doing just great. I'm now at the point that following up within the next year and on into the future at CHOP's survivor clinic is the best thing for her emotionally and mentally. She's struggling with these reminders of something she just isn't remembering so much. It's tough - you want her to forget all the pain and move on, but there's always a reminder that she's a little bit different and that's really hard for her. CHOP can give her ways to process and handle and an understanding as she gets older. Matt and I do that, but can only give her more with CHOP's help as well. Vacation day today - yahoo. Will be doing Christmas fun stuff. Blessing for a wonderful holiday season if anyone is still checking this site. Love, Halley12/3/2010
Mom's entry 11/16/10Brynn had her 3 year off treatment visit on Friday, 11/12/10. The process of getting her blood drawn was difficult, but she got through it like she always does. CBC results were great - nothing of concern. Physical exam was perfect - talked about school, activities, interests, etc. Talked to us about starting to transition to the CHOP survivor clinic. Can occur 5 years after diagnosis or 3 years off treatment. Brynn said she didn't want to - not a surprise (because it's different than what we normally do). But, it might be a good idea in terms of looking at the big picture and what her treatment means for her overall health and mental well being. She cried while I was trying to help collect her urine that "she just wanted to be normal". Dr. Julie talked to me about post traumatic stress which so many kids go through. The survivor clinic would address those things much easier than the satellite clinic. Something to think about - will go to KofP for her next 6 month check, but might thing about a day at CHOP for her 4 year visit. Good news all around. Oh - does want Brynn checked by an ophthalmologist - has been having some headaches at the end of the day. Probably a matter of glasses if that. Appt. is on 11/29. Blessings to you all for a wonderful holiday season. Enjoy your family and friends and know that we continue to be thankful and grateful for every day. Love, Halley11/16/2010
Mom's entry 10/26/10Today is Brynn's 3 year anniversary off chemotherapy. This is a very important day for our family. Really another birthday for our sweet girl. It's hard to believe that it's been 3 years. It almost seems like it hasn't happened - I never thought I would say that. It was so much a part of my every waking thought and now it's not so much. Only to the extent that she's a survivor now. Brynn has been asked to be an honorary hero for Team in Training which I participate in with the Leukemia & Lymphoma Society. She and I will attend various information sessions to talk about Team in Training and for Brynn to share her story. She will inspire even more with her courage and bravery. We'll be at Downingtown Running Company this Thursday. God Bless you Brynn - we're so proud of you. Brynn's 3 year appt. with Dr. Julie will be in November - she'll also have an EKG and echocardiogram. Everyone is doing well. 10/26/2010
Mom's entry 7/13/10Brynn had her visit last week at Dr. Julie's. Another great visit - everything is great. Matt took her and everyone he said commented on how big the girls are. It seems so long ago that they were little tiny girls going in there. Brynn did great - only a fingerstick this visit. Next visit in November will be a full work-up. The summer is going well and busy as ever! 7/13/2010
Mom's entry 3/19/10Brynn had her two year, four month visit off therapy the beginning of March. She's doing great. Bloodwork was perfect and we spent a long time talking with Patti Anne - the nurse practitioner. She wanted to know everything that she was doing - including school and other activities. She talked to us about eventually getting Brynn down to CHOP to the survivor program. I think that happens at five years. Each visit there means we're getting close to that goal. I was anxious for this visit - it was the first four month stretch we had for me to get that reassurance. Scheduled to go back again in July. 3/20/2010
Mom's entry 2/19/10I wanted to post an email that Brynn's teacher sent me today: Hello! I wanted to share with you the poem Brynn wrote today about her Nannie. The kids had to write a poem about a change in their life, so she wrote about her nanny. Warning: Reading the following poem will bring tears to your eyes. My Nannie One day my Nannie died I was upset and that's no lie Our birthday was on the same date I miss sharing my birthday cake I loved my Nannie with all my heart Until one day we had to part Me and my Nannie had lots of fun But now that is done by Brynn Henry I can't even say what this means to me. Brynn feels things so deeply, but she doesn't like to talk about it. If anything, we worries about me being sad. I love you girl.2/19/2010
Mom's entry 2/9/10Tomorrow is Brynn's 8th birthday. It's hard to believe that she's goig to be 8 and even moreso that each year for us is such a miracle. She amazes me and I see her growing into a beautiful young lady. She continues to touch people in whatever she's doing. We had a party for her this weekend at The Pottery Place. it was a small group, but the kids had a really good time and Brynn was really happy. We came home and went sledding - Zachary Besselman went with us and they played awhile after that since it was so cold. It was a fun day for her. I don't remember the last time I worried about relapse. Going to the clinic every 4 months now makes a huge difference. It's still there in the back of my head every once in awhile, but not nearly as frequent or all consuming. Tomorrow is also my Mom's birthday, so this is a hard one for me. Most of the time, we had a double celebration. My heart aches every day for her. I need to talk to her more than ever. We'll get through it - day by day. She's with us and I know is sending all of us happy thoughts. Happy Birthday Brynn!2/9/2010
Mom's entry 12/4/09Brynn's 2 year check up with Dr. Julie went great. She's doing beautifully and the great great news is that she now gets a CBC with physical every 4 months. No visit now until March. This is amazing for her and for us. A little scary for Matt and I to let go a little more, the safety net keeps getting further away from us. She's amazing. She still has an extreme sense of everything that has happened and a maturity about her that is amazing, but through that, she's happy and content. She does seem to hang onto things for security. But, I don't blame her at all. I completed the St. Petersburg Women's Half Marathon for the Leukemia & Lymphoma society and will in the end, raise over $5,000. This is only a very small way for me to give back for everything they did to help us and towards reaching a cure for blood cancers. I will definitely do another one. Love to everyone and have a wonderful, happy, and healthy holiday season. I continually ask for strength to get through the days without my Mom. 12/4/2009
Mom's entry 10/28/09Brynn's 2 year anniversary off treatment was on Monday. We all went out to dinner to celebrate - had a great time. Brynn broke her write last week, so it was the first day she had her pretty pink cast. It's amazing to me that it's been 2 years. I've definitely relaxed a bit more this year, but still have moments of anxiety. I push it away quickly. She is doing so great. She's doing so well in school, she's your typical 7 year old. She won an award at school for her caring ways and the good example she sets everyday in her classroom. We see Dr. Julie on November 3rd for her 2 year visit. I'll be happy for the continued reassurance that she's doing great. Her counts were good last month, but a little low because she was a day or two off of having a stomach virus. Totally makes sense. Thank you to those of you who remembered this very important anniversary - a second birthday to me! I love you Brynn.10/28/2009
Mom's entry 8/13/09HI Everyone, Brynn continues to do great. She had her exam with Dr. Julie last Tuesday. Her numbers looks awesome and she continues in great health. I want to let anyone that checks this site that I'm running a 1/2 marathon in November for the Leukemia & Lymphoma Society's Team in Training. I'm running in honor of Brynn, but also for the many many adults and children that are battling these blood cancers everyday. I'm asking for your support as I have a goal of raising $3800. To donate, please visit my Team in Training website: http://pages.teamintraining.org/epa/StPeteHf09/hbakerhenr Thank you all so much for your continued support. 8/13/2009
Mom's entry 7/1/09Brynn's CBC yesterday was great. She's come so far. Now she sits in the lab chair by herself and chats away with the nurse while they do her fingerstip. Different story though when she gets a butterfly needle. When I called for the results yesterday on the way home, she called from the back seat, "was it great Mommy?" I told her it was. 7/1/2009
Mom's entry 6/29/09Brynn is doing great. Her last bloodwork was excellent. It's taken me awhile to put in this entry. I lost my Mom on June 4th. She died suddenly of a cardiac event it seems. Walking the dog and she collapsed. Works cannot describe how hard I am taking this. I feel like I'm going through the motions and doing what I have to do for my family with this huge hole in my gut or my heart or wherever it is. I miss her so much and don't know why I've been cheated out of time with my Mom. She was so great with the kids. So fun and so giving. I just spent a week with my Dad - had the kids in bible school. I was going to try to go through some of Mom's things, but stood in front of her dresser and started crying. It's obviously too soon. I wish I could see her one more time or ask her what happened. Was she not feeling well and didn't tell anyone. I think she was probably have episodes of her arrhythmia and she probably put it off and thought it would pass. She just had too much on her and never stopped to take a break. I feel her close to me, but I want her back every minute of the day. I worry about my Dad. He's having moments where he just cries and says his heart is broken. I think we all feel like that. Brynn goes tomorrow for her CBC. 6/29/2009
Mom's entry 5/27/09We had such a great Memorial Day Weekend. We went canoeing on Saturday and the girls had a blast. Bella was filthy and loving it - I think. Sunday was nice just being home. Monday morning, I ran a 5K for a little girl with ALL - a year into treatment. It brought back so much for me. Brynn saw her and she comments about not having to take medicine anymore and speaks almost so lightly about it - like no big deal, it's done. I'm so glad she's that way and has no idea of the enormity or the heaviness or the toll it took on Matt and I - those years getting her through treatment. That's the way it should be. These sweet sweet kids should be shielded from that harsh reality. They'll face it sooner than later as they grow older. But, I also know she felt empathetic towards that little girl as I felt empathetic to the Mom that was holding her. But, what a great event for them to see all those people come out and run in honor of her. I loved it and felt like in a small way - I give back. Later that day, the girls and I spent the day at the pool we joined for the summer. Brynn is a FISH - she laughs that I joke with her that she truly is half fish. Paige, on the other hand is such a peanut that she starts shivering within minutes of being in the water. All is well and good. Love to everyone.5/27/2009
Mom's entry 5/13/09Brynn had her 18 month visit off therapy last week. It went really well. Numbers look great and Dr. Julie is thrilled with how she's doing. No evidence of late effects whatsoever. She said there are no gray areas at all on her CBC. She really is doing so great in other ways too. Socially, she's much more open, I see a confidence in her that I didn't see before and just an overall openess to new things and not trying to control every little thing. Whenever the leukemia comes up, she says, "that's over, why do we even have to talk about it." Usually it's in some context from Paige that she didn't have to do something that Brynn had to do with her leukemia treatment. They're both really doing so well. School will be out in 27 days and we look forward to the summer spending time together going to the pool. No vacation planned, but that's OK. We decided to take a break from Camp Sunshine this year. Brynn could go to the Ronald McDonald camp in the Poconos this year, but it's a week and she says she won't go without me. Next year, Paige could go with her as a sibling, so we'll see. Dr. Julie says it's an absolute blast for the kids. Part of me thinks she just doesn't want anything to do with it anymore. It was so much her life for so long that I don't really think she wants reminders of it. Either way, is fine with Matt and I. Matt and I ran the Broad Street Run together almost 2 weeks ago. So, I guess that's the latest. Until next month... 5/13/2009
Mom's entry 3/4/09I never posted Brynn's results from last month. She's doing great. Counts were good last month, ANC was a bit down because she had a terrible cold, but Dr. Julie said everything is great. Her weight is right back where it was when she was diagnosed. She looked at the size of her chart and said for 4 years and to still be on volume 1 was amazing. She said she'll do great. It's the first time that I felt like I could breathe a sigh of relief a little bit. They never want to give any kind of false hope or guarantee because there is no guarantee, but I felt it was her way of saying, everything is going to be fine. We went yesterday for just CBC and counts are great. WBC 7.6, Hgb 13.4, Platelets 308,000 and ANC 4180. We never wait anymore for the results. Brynn cried alot yesterday. They went to prick her finger yesterday and we heard the click, but it didn't catch the skin. So, they had to do it again and Brynn was so mad. I think she had herself psyched up and then it didn't happen the first time. She still has so many things that haunt her, but I've seen her come out of her shell so much, it's unbelievable. She's interested in wearing different clothes and is so much lighter about everything. Except for her hair. She'll wear a bandana in it now, but still no barettes, no ponytails, nothing. She doesn't even like me to touch it or play with it. She's so grown up now and so mature about everything. Sometimes her treatment comes up in conversation, and we leave it quickly behind. Not to hide from it because it's always there, but just to continue living in this easier and happier world that we're in now. I'm so grateful every day for them. I'll definitely post pictures and thank you everyone for continuing to follow Brynn's progress. The other week, I was working in the basement and came across some pictures in a box of when Brynn first started treatment and she was so blown up from the steroids. It literally broke my heart and I started to cry. Part of me never wants to look at them again, but they also remind me of how amazing she is and how strong she is and how very very lucky I am to have this amazing, close relationship with my girls. Everyone is doing well. Paige is loving kindergarten and Brynn first grade. We survived girl scout cookie time with the daisies and looking forward to the summer. Matt is doing well - running still like crazy and inspiring me to run the Broad Street run. I'm trying to plug along. Not as easy for me. Our puppy is amazing - we love her so much. I'll keep posting!3/4/2009
Mom's entry 1/4/09Brynn's been doing really great. She goes for her CBC this week and I actually need to get the blood results from last month's blood draw. We didn't wait and I didn't even call for them. I've come a long way. I remember when I used to sit in that waiting room and wait for that piece of paper with those numbers I would wait all month to see. It's so good to have that first year under our belts. The holidays were great. Brynn HAD HER FIRST HAIRCUT! She finally did it and I was so proud of her. She had been so afraid and would scream at me at the slightest mention of needing a hair cut - as I would painfully try to come out her hair after baths. It was so long. The girl did a great job and cut off a good 2". You could just see how proud Brynn was of herself. Everything else is status quo which we love. Sometimes I wonder if we should just end the website and print it out or archive it or do whatever with it - I'm not sure. I don't even know if anyone still reads it. I certainly don't feel done with this part of our lives, but it certainly is not part of it a whole lot. So, I guess I'll continue to put in my updates occasionally and continue to thank everyone for your thoughts and prayers. We wish you a happy and healthy 2009.1/4/2009
Mom's entry 12/8/08Brynn's doing great. She goes for her monthly CBC tomorrow and she asked me this morning if she'll be going to Dr. Julie's forever. She's been asking me this alot and I give my answer the same way. I say yes, but that it will get less frequent to where it's only once a year. I think she knows the answer to her question, it's just validation for her to keep asking it. Brynn had salmonella about 3 weeks ago. It was awful. 10 days of fever, diarrhea, vomiting, not eating, getting her to sip pedialyte constantly. She spent a day at the clinic after about 5-6 days of fever for the usual blood work, they did a chest x-ray, urine, etc. All negative. Finally came back from the pediatrician after the 10th day that the fever broke - that her stool sample came back positive for salmonella. We have no idea how or where she got it. The health dept. called me this past week asking detailed questions. It's possible that we all ate something, but only Brynn was affected because of her essentially "new" immune system. Poor girl, another hurdle. We're all excited for Christmas this year. Last year and especially this year, things continue to feel "lighter" for us and without thoughts of leukemia and worry. Matt ran the PHiladelphia marathon and we were all there to see him finish. It was amazing - so inspiring. We were all so proud of him. Have a wonderful holiday season to our friends and family. 12/8/2008
Mom's entry 10/26/08Today is the one year anniversary of Brynn being off treatment. I can hardly believe a year has passed with not taking medicine. The years on therapy seemed to drag like a heavy weight on my heart every day and now I write this with the biggest smile in my heart. My sweet girl has made this huge milestone as well as so many other milestones this past year. Ones that would seem so insignificant to others, as we know what huge accomplishments they are for her. We're going out to dinner tonight to celebrate because this is a second birthday to us and always will be a day to celebrate for the rest of her life. Some day when she's in college or a grown woman, she'll know why she gets a bouquet from her Mom and Dad and Paige too. This year has also been a huge one for Paige to grow and come out from behind Brynn's shadow. The fighting and arguing attests to that! Brynn, I continue to be so proud of you and this day marks the first year anniversary of you being a leukemia survivor. I love you.10/26/2008
Mom's entry 10/15/08Brynn had her monthly CBC yesterday. Everything looks great. ANC 5400. I don't even know why I give the numbers anymore. They all look stable and as long as they continue to say everything looks fine, I'm good. We're good. We're approaching the one year anniversary on the 26th. We're definitely going out to dinner that night. I can't wait. A true celebration. It went so fast too, as the years in treatment drug by so slowly for me. It felt like slow motion and the past year was like the snap of my fingers. Brynn is doing so great. Her confidence level is so high and her attempt at control over everything is so much better. She just seems balanced. Now, Paige, on the other hand, is testing me so hard. She must be trying to find herself as a five year old because there's been so much crying and yelling and obstinance from her that I've never experience. I'm sure in so many ways, this is her time. She's been a back seat driver for so long that she's kicked Brynn into the rear seat and she's at the wheel. My Mom always says, "you never had a sister, it's different." I guess I'm finding out through them. Thinking of Noah and I think either done with therapy or approaching the end of therapy. I'll visit his site next. Love to all. The Henrys10/15/2008
Mom's entry 9/22/08Brynn's counts last week were great. ANC was 3200 and everything else was fine. This was the first month that I didn't sit in the waiting room and wait for the results. It's amazing how I've clung to those papers and those numbers for safety and reassurance. So, this time, they did the fingerstick and we left and went to Trader Joe's and I called the nurse an hour later. It was OK and good for Brynn too that we were in and out. Each month now, Brynn asks how much longer she'll have to go and get finger sticks. I keep reinforcing that she will always go, it will just get less often. Everyone is doing really well and Bella too!9/22/2008
Mom's entry 8/25/08New pictures up - thanks Doug! We got our pup! She's so sweet, the best dog for us that I ever could have imagined. She's fitting right in and the girls love her so much. We had a great time at Aunt Dee's birthday party yesterday. Brynn was in the pool the whole time until we left. It was so nice to see everyone and enjoy a carefree day! Week 1 of school went pretty well. Paige had some adjustment issues, was teary almost every day. At drop off this morning, she started crying and was reaching out her arms as I was driving away. Talk about heart break. As soon as I get home, I know I'll hear the chatter about all they did. I always tell them that they wear me out and then they tell me that I wear them out. :) Now I have a pup that's wearing me out, but it's all good. 8/25/2008
Mom's entry 8/18/08I don't know hardly where to start so much has happened in the past week, the past 24 hours. Brynn's visit at Dr. Julie's last week went really well. Counts were great, physical exam was perfect and we're on the downhill towards that one year mark. It's just overwhelming and I want it to get here tomorrow. 10 months now and doing great. Friday they both had well visits and each got their five year immunizations - 4 each. That was brutal for me and for them, but we all got through it and Paige was so excited because she was officially ready for kindergarten. I think everything this summer was based on whether it was before or after her shots. So, she knew she started kindergarten after the shots. So, that was today - first day of school and they both did great. It's so quiet here I can hardly believe it. Except for the fact that we picked up our puppy at the airport last night at 11:45. Bella is here and she's the sweetest thing I ever could have imagined. She has the kindest and sweetest eyes and she's gentle and loving. She was afraid to come out of her crate at first, so I pulled her out and Brynn woke up and when she saw Brynn and heard her voice she started to perk up and eat some food out of our hands. It must have been so scary for her on that plane for 7 hours. So, it's me and the pup here and she's sleeping and I'm drinking coffee. A good distraction today instead of thinking that my girls are both now in school. I'm so happy for them - Paige was so ready. I still need to get pictures up from Camp Sunshine and now a picture of our Bella girl. 8/18/2008
Mom's entry 8/9/08We're home! We had another great week at Camp sunshine. The trip up was better, but still a bit difficult trying to grab some sleep in the middle of the night. The weather was rainy, but it didn't stop the fun activities and relaxing time that we had. The highlights were swimming for Brynn and she got to go out with professional competitive Bass fishermen on their $80,000 boats. She caught a fish and was very proud of herself. Paige had really nice volunteers in her camp and all were amazed at her artistic abilities. I did karaoke for the first time and got a good laugh out of that. Matt and I met another really great couple from NY that we spent time with. Their daughter is almost a year off therapy now. Then, we stopped in Mystic and enjoyed our short time there. We all had a romantic dinner on the water. The drive home was long again through NY - I think we made it in about 7 hours yesterday. It was so good to come home. There's no place like home. We have a busy week here. Brynn has her 9 month check at Dr. Julie's with CBC and exam, well visits at the pediatrician on Friday and we're still waiting for news when Bella is going to arrive. It sounds like over the weekend. School shopping for supplies and uniforms for Paige and then school starts on Monday, the 18th. I'll see if we can get some pictures of camp up. 8/9/2008
Mom's entry 7/28/08I haven't written in so long. Everything is going really well. Brynn's last clinic visit was just a CBC. ANC was in the 5,000's and all else was good. She was 9 months off therapy on the 26th!!!!!!!! Only 3 more months until the one year mark. It's so hard to believe. It's so great to see her more carefree, more energy, not so afraid of things, overcoming obstacles is so much easier for her. Her next clinic visit in August will be CBC and exam. We leave for Camp Sunshine on Saturday. I can hardly wait. We're trying a different approach this year. Matt and I will drive through the night with the hope that the girls will sleep most of the time. We'll be there from the 3-7 and then we're staying overnight in Mystic, CT on the 7th and should be home on the 8th or 9th. The other big news is we're getting a dog - a puppy. She's coming the second week in August. A labradoodle. It's a long story, but I originally wanted to rescue one and somehow made contact with this woman that is a head start teacher and was in education for over 20 years. She understands the fears that kids have with dogs and recommended this breed for Brynn. They're supposed to be gentle, loving, sweet, and caring. They're not big barkers and they don't shed. All good. OUr love goes out to all of our friends and to everyone that continues to support us. I feel like the heaviness is lifting and the worries are not as intense. It's starting to feel like freedome from it all, but you still allow that guard that needs to be there probably for the rest of our lives. I don't feel like we're defined by leukemia anymore. I'll post after our trip and hopefully with pictures of Bella. 7/29/2008
Mom's entry 6/19/08Brynn's clinic visit went well this week. She had to get the needle again due to repeating her BUN and Creatinine. Again, she was really scared, but she did so great. She gets this look in her eyes and just looks as me. The big blues fill up with tears, but she did it. How many times can I say that I'm proud of her. Counts were good and BUN and Cr are back within normal limits. So, I'm continuing to pump her with fluids "just in case". So strange to go from worrying about the leukemia daily treatment and everything that goes along with it to worrying about after effects and delayed effects from all the drugs. Through that, I continue to rejoice that she's doing so great and we're all doing great. Paige turned 5 on 6/6 and the first thing she said was "can I go to kindergarten now?" She's so excited she can't even contain herself. Brynn finishes kindergarten next week and her teacher told me this week at her picnic on Monday that she's so extremely proud of her and that she's come so far this year. I can hardly write about it without tears. My sweet girl has struggled so to keep things normal and the same and this year she has had to adjust to being away from me every day, being in groups of people all the time, wearing uniforms, getting sick, so many things for all of us. It's all so good. 6/19/2008
Mom's entry 6/2/08Brynn's been doing so great! Her energy level is amazing, she's eating and sleeping well and she's doing great in school. One little thing that came out of her last clinic visit - PattiAnn called and said that her BUN and Cr were slightly elevated. Nothing to worry about, but enough that they want to check it next month. So, that visit is probably coming up next week. I have to check. Brynn's getting ready for summer break and winding down her school year as a kindergartner. She'll be a "grader" next year. We can hardly believe it, with little Paige right behind her in kindergarten. Brynn is finished with school on 6/27. We're hoping for a trip to visit with matt's Aunt and Uncle at the beach in July and then our trip to Camp Sunshine the first week in August. Paige is doing great and Matt and I, I think, are finally starting to feel like we're coming out of this fog of stress and worry little by little. I've started running. My main motivation was this thought of turning 40 in September and needing to get myself in shape. But through this training that I'm doing, I'm realizing how freeing it is to get out there and run and feel like I'm a champion for everything Brynn has been through and everything our family has been through. Whenever I struggle with feeling tired or can't catch my breath, I think of that battle and how much stronger we've come out of the experience and it pushes me on. I know it sounds corny, but it's given me a drive to succeed. I ran a 5K race yesterday and the sweetest, happiest thing out of it, was seeing my family at the finish line with my girls clapping and Matt there grinning ear to ear. He's my biggest fan and coach. I love you all. I'm passing the word about a fundraising event for Horse Power for Life. It's a "WOOFS 4 HOOFS Dog Walk for Cancer": Please bring your dog, family and friends and join us for a walk through the beautiful trails at Warwick County Park located at 382 County Park Rd, Pottstown, PA 19465: 4 miles west of Route 100 off Route 23. You choose the trail you want to walk. Many levels of trails including: ACTIVITIES FOR CHILDREN Complementary Craft Activity: Paint a real horse shoe and take it home for good luck!!! Two playgrounds available for children (ages 2-5) and (ages 5-12). RAIN OR SHINE: COVERED PAVILION Please bring a bagged lunch for picnic after walk. Baked goods will be available for sale. Complementary beverages will be provided. I hope some of you can make it! I'll be there helping or walking, all of the above. :) 6/2/2008
Mom's entry 5/14/08Brynn had her six month off therapy clinic visit yesterday. Everything looks great! Her ANC is 5,896, Hgb 12.5, Hct 37, Platelets 285. She's lost weight, she's grown in height and Dr. Julie said she doesn't need to lose anymore, she'll just continue to sprout taller. She was really happy with that. Brynn also had to deal with now not getting a fingerstick, but venipuncture - the needle. She did so great. She was crying and she kept saying, "Mommy, I'm scared." But, through all that, she held still and she did it. I couldn't be more proud of her everyday. This is where I stand back and take so many lessons from them. They just amaze me with how they persevere and keep on facing fear after fear and overcome it. Physical exam was good - Dr. Julie said she looks fantastic. So, we celebrate this milestone and plug on towards the 9 month milestone, then one year, then..... continue to celebrate Brynn's remission. I love you so much girl. Afterwards, we stopped at the mall and Brynn got her beloved soft pretzel, Paige got a milkshake, and I got a cup of coffee. We needed to celebrate. It was a good day. 5/14/2008
Mom's entry 4/24/08I haven't written in awhile. We've been in the dredges of viral illnesses. Brynn's counts were great last week. ANC was 4500 and HGB and HCT were stable. We're almost at the 6 month mark off therapy. I want to get to the one year mark so quickly. Both girls started with congestion wed or thurs, I can hardly keep it straight at this point. Brynn got pink eye on Friday which cancelled our trip to my parents and the circus. Still not better by monday, so another trip to the pediatrician. Strep tests were negative, ears were OK (Paige had puss in her right ear), but the pediatrician wanted to wait and see. Then, Brynn started with a rash on Wednesday. Probably part of the virus. She has been at school and doing fine. It's just the constant worrying for me. It's so difficult to not let those thoughts of relapse seep into every moment and every little illness. I was almost relieved that Paige got and my Mom got it because that really means it is a virus and not just Brynn that got it for some other hidden reason. It's just so hard to keep those thoughts at bay, yet I know that she'll be fine. She's in school - she's exposed to so much, she's going to get sick. These are the constant rationalizations that I have to do over and over. 4/24/2008
Mom's entry 4/2/08New pictures are posted! Thanks Doug. We had a great time over the weekend at Horse Power for Life. The girls actually got on their medium pony, Detour, and got to ride. Paige said she's ready to jump already - of course she is. Brynn did great, I was amazed at her confidence once we got there because she was saying she didn't want to go as we were getting ready to leave. This is just want I wanted for her and Paige. To feel confident and empowered that they can do this. And Detour is so gentle and kind. You can tell he's used to children. Otherwise, everyone here is well and doing great. I think both are going through growth spurts. 4/2/2008
Mom's entry 3/27/08Everyone is doing well. Brynn had her second author's tea yesterday. Her story was amazing. It was all about Paige and how much fun they have together and how much she loves her. She even had in there that Paige loves to play in her room and make it a big mess. She didn't read her story outloud in front of everyone, which is OK. Ms. Jernigan said how proud she was of all of them for them to be at this point, writing their own stories, organizing their thoughts into 4 different sections of the story, illustrating it, and then typing it. Brynn's kindergarten class is the only one in the school doing this. Brynn said that at dinner last night and had a very proud look on her face. These stories have become quite stressful for her. I can tell in the mornings when she's worried about them. The reason being is that she's a perfectionist, just like her Mom and Dad. She worries about being finished in time, when she actually has been finished for over a week and some of the kids yesterday weren't finished. I know Ms. Jernigan constantly tells her to be easier on herself. The drive is innate and has gotten her through so many tough situations. One of the most strong people I've ever come across in my life. Easter was so fun for the girls. They were so excited Easter morning that I think Paige was actually shaking while they were looking through their baskets and looking for Easter eggs. We had a quiet dinner and enjoyed some time outside. The girls and I planted pansies and it was just a really quiet, nice day. One of those days where nothing else mattered except being together. I love them so much. 3/27/2008
Mom's entry 3/19/08Brynn's counts were great! Hgb 12.4, Hct 265,000, and ANC 3180. Worries gone. While we were in the waiting room, Brynn and Paige started playing with a little girl and boy that were there. So, I started talking to their Mom who turned out to be a blessing in disguise for me. Her daughter went through leukemia treatment and has been off therapy for 3 years. She's doing great, which is wonderful. But, she told me that the first year is so hard, the hardest. She said to celebrate all of the big milestones that Brynn reaches. 6 months off therapy, 9 months off therapy, and then every year after. She said they take in cupcakes to her daughter's school on her year anniversaries because it is a birthday in many ways. It was so reassuring to me to hear that she worried with the first fever, the first illness, etc. off therapy. I also saw one of the nurses, Megan, who I talked to last week when I was teary telling them Brynn's symptoms. When i apologized, she said, "why?" She said absolutely that all parents worry off therapy. So, how hard if you can imagine to adjust to a devestating diagnosis, years of chemotherapy, and then lifee off therapy when your child is on their own to stay healthy. So many ups and downs. So, when Matt and I feel crazy, we always keep all of those things in perspective. Brynn is doing great though. Last night, she and Paige were running all over the kitchen. I had so many people yesterday at her school and at the clinic saying how great she looks - that she's sprouting up and thinning out - just like they said she would. The Mom I talked to said that when her daughter reached the 6 month to 9 month mark off therapy, she could really tell that her energy level was normal and the temperment was completely evened out. I hope we can stay in touch. She was exactly what I needed yesterday, in addition to those CBC results. Have a wonderful Easter holiday everyone. So much to be thankful for!3/19/2008
Mom's entry 3/17/08Happy St. Patrick's Day. Brynn seems to be over the virus. It took a good week and really knocked us all for a loop. She went to school Friday and she was so proud of herself that she made it through the whole day. The girls started horseback riding lessons yesterday through Horse Power for Life - an organization that provides horseback lessons to people fighting cancer or cancer survivors and their families. Yesterday the instructor showed us the stables and all the horses and spent a long time talking about respecting horses and how they communicate. She also did some work with bridles and how to hold the reins. Brynn kind of got distracted towards the end, but for being 4 & 6, I thought they did great. Brynn was a little put off by the sound the horses make when they sneeze. Anyway, the next lesson is on the 30th. Will probably be spent doing grooming. CBC scheduled for tomorrow. I'll be glad to have that reassurance for the month. Have a good week everyone!3/17/2008
Mom's entry 3/14/08This is Brynn's first day back at school since this nasty virus hit her. We tried on Wednesday, against my better judgement, and I got a call from the nurse by noon that Brynn wasn't herself and complained that her belly hurt. So, she was home yesterday while I worked from home. She was good, eating a little more and drinking like a champ. I called Dr. Julie on Tuesday and they didn't want to see her with the symptoms I described, saying it sounded like a viral syndrome and would need to run its course. Unless she got worse or the fever continued or came back. The fever never came back and she's been slowly getting back to herself. It's been so scary for me. The old feelings of worry consumed me and I've been a wreck inside all week. Matt took her to school this morning and her teacher said that it's hit so many kids, so that reassures me. I just want to get through today, get to the weekend and have a few more days that she can recoup. If I get a call from the nurse today, we're definitely on our way to the doctor. I'm trying to slowly get myself together and know that this has nothing to do with leukemia.3/14/2008
Mom's entry 3/11/08Brynn started with I guess the flu Friday evening. She's had the gamut of symptoms from headache, fever, nausea, vomiting, diarrhea, lethargy. It has been a real test of faith for Matt and I. Faith that it has nothing to do with leukemia, faith that that is all behind us, faith that it will never come back and that she and our family has had enough. I've been so worried, especially the fever part. This was the first fever post treatment that did not mean a hospital admission. I haven't even called the oncologist or the pediatrician - trying to treat this like a virus in a normal kid. But, there's always that little piece of doubt where my mind wonders to and I have to fight with myself to not go there. I hate it. No one slept well last night either. So, I'm always at my lowest when I'm sleep deprived and worried. Brynn lost her front tooth this morning and that was traumatic, but she's past it and looks so cute. Next week is her scheduled CBC check, on Tuesday. 3/11/2008
Mom's entry 2/26/08This was on my calendar today: "You can do what you have to do, and sometimes you can do it even better than you think you can. " ... Jimmy Carter I think it's a good thing that I'm not on this site so much anymore. So much of what's happening in our lives feels so much more normal. It's amazing and I don't take any of it for granted. I don't know how many times a day I say how grateful I am for everything. Brynn's doing great and we're all enjoying this life off of medicine. Our prayers and thoughts still are with all of our friends still battling on and we can't wait to cheer them on to the finish line - noah, eddie, tyree, friends from Camp Sunshine. We have our application in for the beginning of August. Hoping we receive a sponsor. We received Paige's paperwork that she is officially been enrolled and accepted at Collegium for kindergarten. Both my girls off at school - hard to believe. In a blink of an eye, they're growing up. I'm so happy and overjoyed to see them happy and healthy. Matt and Aunt Menie are in Delaware today visiting with Paul. So many prayers out for them. Is it better to know you're life is coming to an end and you have the chance to say goodbye and say anything that hasn't been said? I hope so for they're sake. Matt's running a race this weekend and we're all going to cheer him on - can't wait. And hopefully celebrating our anniversary this weekend with dinner out. Meeting my parents and Doug's family this weekend on Sunday if all goes well. Brynn's next CBC is mid March. 2/26/2008
Mom's entry 2/20/08Brynn's appointment at the clinic on Monday went great. Her ANC is over 5,000, Hgb 12, HCT 282,000. Her eczema is doing much better and we've decided she doesn't need to see the dermatologist anymore, she's lost some weight, and Dr. Julie was really happy that she's doing so incredibly well in school. The fingerstick went better than last month. Apparently, at her 6 month off treatment appt, she gets venipuncture for full blood work. We'll approach that when the time comes. We're turning in our application for Camp Sunshine today - hoping for the Aug 3-7 session. Brynn saw me filling out the paperwork last night and she read the top of the paper that said "Camp Sunshine" and she started jumping up and down because she's so excited to go back. It was great to see her so excited about it. So, hopefully, some of our friends either from our local clinic or from last year's session will be there with us. More snow coming today and maybe Friday. 2/20/2008
Mom's entry 2/14/08Happy Valentine's Day. Brynn's clinic appt. was rescheduled until Monday. I think we were pushed to low priority since she's off treatment (which is OK) and the clinic day was going to be crazy with trying to reschedule kids that needed treatment from the day before. So, now Matt will take Brynn in since he's off and I'll be at work. Both girls' schools were cancelled, so we spent a day in staying busy. Everyone is doing great!2/14/2008
Mom's entry 2/12/08Brynn's appointment was rescheduled until tomorrow. We had a snow and ice storm today. Brynn's school was closed early, so we'll go tomorrow at 3:00. It was nice being home this afternoon with both girls. I miss that actually. Brynn and I made Valentine's Day cards for all of her classmates. She was so cute - making little comments and observations about each kid. We got her report card yesterday. She's doing so well. I'm so grateful she's where she is. Everyday is a new day in so many ways for her. I just see her growing and coming out of her shell almost every day. It's amazing to see. She hardly ever talks about her treatment. There are no more questions about her hair coming out again. The only thing she ever comments about is if the pink scar will look lighter. Of course I always say that it will. Even when we talk about going to Dr. Julie's, that's all there is. She's not saying no to the finger stick, so I'm hoping that will go easier tomorrow than the last time. Paige will be going to my friend's house for a few hours after her school while I take Brynn. I'll check in with counts tomorrow or Thursday.2/12/2008
Mom's entry 2/7/08I haven't written in a long time. Brynn's doing really well. Has been doing great in school and loving everything she's learning and doing. We're having a surprise birthday party for her this weekend. She turns 6 on Sunday. I'm excited for her. It will be so nice to see her enjoying her birthday with her family and friends. We'll see how she reacts to the surprise. I think she'll either love it or she'll be crying. Either way is OK. Brynn's next CBC with exam is Tuesday. She'll have great counts I'm sure. 3 1/2 months now off of medicine. This will be her first physical exam now that she's been off chemo. I wonder if she'll have reflexes again. She's full of energy and has been dropping weight. She looks just great. And the hair - it's getting so long. She still will never get a haircut, I'm sure. I've never seen such a drive in anyone. It will take her far. :)2/7/2008
Mom's entry 1/23/08Hi Karen. It looks like we would have to go Aug 3-7. Brynn won't be out of school until June 28. It would be so nice to be there together. Email me to let me know your plans. Would love to see you guys at clinic. We've been trying to go on Tuesdays. 1/23/2008
Mom's entry 1/17/08Brynn's counts are good from the clinic on Tuesday. ANC was over 5000! She was sooo scared to have a finger stick. She was so used to having her port accessed. She cried and hit at me to not have it done. But, once it was over, she told the nurse she would know what to expect next month when she came in. And she said that she would be older next month when she was in. Since she turns 6 in February. I thought that was so cute. Other than that, things have been uneventful! I love that.1/17/2008
Mom's entry 1/7/08Paige was diagnosed with pneumonia last week. She was fine other than the deep chesty cough. Doing much better now on Zithromax and albuterol mininebs. Brynn had a tough time adjusting back to school after being off so long for Christmas break. And I think she's been having nightmares and/or is worried about her hair coming out again. She touches her part and asks why there's no hair there or touches the top of her head and thinks she feels less hair. I'm sure she's trying to process everything in bits and pieces that has happened over the years. She asked me yesterday where the bag was that had her old hair in it. I told her i still had it and always would. How does she remember? I don't have many memories before age 5 it seems. When something of this magnitude happens, I guess there are inside and outside scars, no matter what age. Her incision from the port removal is doing really well. In for a CBC next week. She's really doing great. Have I said how great it is being off meds? We've really seen a difference this past week in the steroid puffiness. It's going away little by little. Thanks Doug webmaster for the picture update!1/7/2008
Mom's entry 12/31/07I haven't written in awhile. I see the entries from our friends from Give Kids the World Village. Those memories will be forever for us. Thank you for being a part of them and for so many of our girls' smiles. We had a great Christmas. Brynn started feeling better and I started feeling better. We traveled to my parents the weekend before Christmas and it was so nice to spend time together. My Dad is doing great and looks physically different without the barrel chest and labored breathing. He looks healthier than he's looked in a long time. Amazingly only a little past one month since his transplant. Christmas Eve was a busy day baking cookies and running for last minute items. But, it was so nice being together with no steroids on board. Brynn is so much more even tempered and happy. Which makes it so much less stressful for me always trying to balance the anger and irritability. Christmas morning was amazing. The girls were so excited and Santa was very good to them. Brynn thought she heard jingling bell type sounds outside at one point - sure that it was Santa and his reindeer. Mom Mom and Ric came over later in the day and we had a nice dinner and exchanged presents. This was a really wonderful Christmas for us this year. It didn't feel so heavy. Brynn's healing well from her port. Still has the steri-strips intact. I'm hoping they fall off at some point soon. The other "trauma" was that Brynn has 3, maybe 4 teeth loose, the top 2 and I think a bottom one or two. Yesterday was Matt's birthday and we had such a good day. We went to Barnes & Noble in the morning and found some good stuff with gift cards from Uncle Doug and Aunt D - thank you! Found a birthday gift or two - last minute shopping for sure! We had a nice dinner and afterwards the girls put on their Christmas dresses and were dancing around. Brynn, you could tell, felt so pretty and was so happy. So much can be taken for granted in life, but I have the memory of her holding up her dress, spinning around, smiling, and throwing her hair back in my heart forever. I know she feels different and more free. I couldn't be happier for her. 2008 will be such a different year for us. As tough as the past few years have been, I'm so grateful for everyday that we're together and continue to grow as a family.12/31/2007
Mom's entry 12/20/07Surgery went well yesterday - the PORT IS OUT!!!!!!!!!!! Yippee! Brynn did so great, was a real trooper. The preop area was so good to her. Her OR nurse came into the holding area and walked in with her hands in the air and said what a great day it was. She said this is almost as huge as graduating from high school. Brynn smiled. She told Brynn that since it was such a special day, she deserved something really special. She said the hospital as a special stash of quilts that they reserve for very special occasions. She brought in this stack of quilts and Brynn picked out a pink one with dogs all over that were colored by an elementary class somewhere. They also left one for Paige because she's been through so much in her own way. They let me go into the OR room with her and it was so cute - they had me all suited up and told me to hop on the guerny with Brynn and they wheeled the both of us to the OR room in celebration. It touched my heart and made it burst with pride for what Brynn has done. They had to put her to sleep with the mask, which Brynn hates and that was the only really hard part of the day. I had to hold her hards down in a bear hug while she fought with the mask on. She fell asleep and the one nurse walked me out while I cried out of happiness. The procedure was over in less than an hour and we met Brynn in recovery. She slept and woke up nicely. The nurse taking care of her in recovery was so nice. She looked at me while we were talking and said, "so, how are you?" It was so nice to have someone ask me that. My first thought was to say, "where do you want me to start?" But, just having someone really know the effect of all of this on our family means the world to me. She and I spent a long time talking while Brynn slept. So, today, Brynn is a little sore, but slept great. It feels so good to be free of that port that helped her so much, that I never wanted. We'll have the scar as a reminder, but that will fade slowly just like the memories. It's been a very difficult week as I am still not feeling better, but still carrying a huge load. I'm so looking forward to Christmas this year. We wish you all a wonderful holiday season and a great 2008. 12/20/2007
Mom's entry 12/17/07Brynn was in the hospital. Went in Thursday evening with a fever of 103. She's home and doing better. Diagnosed with possible pneumonia vs. atelectasis and most likely a virus because Paige got it on Saturday and I got it early Sunday morning and am still feeling awful. Port still scheduled to come out on Wednesday. Happy Birthday Frannie! 12/17/2007
Mom's entry 12/13/07New pictures from end of treatment and Disney World under December 2007 in the Photos. Thanks Doug!12/13/2007
Mom's entry 12/11/07We're home! We got home around 5:00 on Sunday evening. It was such a great trip, can't even describe how great it was. Give Kids the World Village was amazing - not just saying that. Again, we're completely touched by the amount of amazing people and volunteers that give to these kids that are battling and fighting everyday. We spent two days at Magic Kingdom, one day at Sea World, and one day at Animal Kingdom. The best part for Brynn and Paige had to be meeting all the characters and giving them hugs. The one night at the Village, Disney characters came for a Christmas party. It was so great - they let the kids decorate gingerbread houses, gingerbread cookies, decorate sugar cookies, make bracelets, decorate their own stocking, Santa was there with presents, and Mickey and Minnie were there with Pluto, Goofy, Chip and Dale. At one point, Minnie grabbed Paige and Brynn's hand and kept pointing at the train that runs around the Village. She wanted to take them on a train ride. So, Mickey and Minnie and Brynn and Paige and a few other kids got to go on their own personal train ride with Mickey and Minnie. It was so cute. There's just so much. Our villa was beautiful, there was a heated pool right down the street from us (the smaller of the two), there was a breakfast cart that could come to your room in the morning if you didn't want to walk to the Gingerbread House, they left us presents in our villa every day secretly. We never knew when they came and we never saw anyone sneaking into other villas, let alone ours. It was so funny. I also don't know how many stuffed animals we came home with. Matt and I didn't know how we were going to make it home. The plane trips went really well. Both girls did great. The trip down was almost completely empty and the girls made friends with one of the flight attendants who talked to them almost the whole trip. The flight home was packed full and a little boy screamed almost the whole trip. The girls and I sat in the very last row of the plane and again made friends with one of the flight attendants. Matt was up in the middle of the plane near the screamer. There's so much more - there was a carousel at the Village and an ice cream shop that was open all day from 7 am to 9 pm. Waffles for breakfast every morning with fresh strawberries and whipped cream, cup cakes every night with dinner, pizza you could order every day from a pizza shop right in the village from 4-10, miniature golf, a game room with a pool table, ping pong and air hockey. The fierce competitiveness came out with both girls on the air hockey table. Looks like one might be coming for Christmas. We're so grateful to the Make a Wish Foundation for this wonderful healing trip our family took after 2 1/2 years of nonstop medicine and treatment for Brynn's leukemia. It was so needed and greately appreciated. Brynn started in her brand new school building yesterday. I was back to work, as well as Matt, and Paige was back at school. Now looking forward to Christmas. Brynn has a CBC on Friday. Port scheduled to come out on the 19th. 12/11/2007
Mom's entry 11/28/07Last dose of Bactrim last night. That's it. She's done with all medicine. Now we just get the port out in December. Having a good, but busy week as usual. Everyone is good. Brynn's eczema is flaring a little bit. I can only imagine the adjustments her little body is making being off all the meds it was so accustomed to for 2+ years. Every little bruise, I catch myself a little bit thinking what is only natural to think. But, what five year old kid doesn't have a bruise on their leg or arm. It's hard to keep things in perspective, but I'm really trying. Five days until Disney. I haven't packed a thing. 11/28/2007
Mom's entry 11/26/07One week until Disney. It's hard to believe that this time next week we'll be settled into our place at Give Kids the World. The volunteers from the Make A Wish Foundation came on Sunday to deliver our plane tickets and go over general information. I sense that Brynn is overwhelmed by all of it. She'll do great, I know it. My Dad had his lung transplant, actually coming out of surgery about now one week ago. He's doing great. I traveled to Pittsburgh on Wednesday, spent some great time wtih my brother Doug traveling out to UPMC and back. Had Thanksgiving dinner in the hospital cafeteria with my Mom and brothers. Not the expected setting, but no matter where we all were, there truly is so much to be thankful for. I have seen so much bravery in my life between Brynn and my Dad now. Hi Karen and Abigaile - I'm wondering if Abigaile was doing some typing like my girls do on my computer. :) Think of you guys so much!11/26/2007
Mom's entry 11/19/07I think my Dad is having a lung transplant today. He has alpha 1 antitrypsin deficiency causing severe COPD. I'm scared, but at the same time hopeful that he'll have a new life without the feeling of suffocating every minute of the day. This was going to be the first Thanksgiving I spent with my family in 4 years. But, even if we're not together, I have so much to be thankful for that I wake up every day and feel so much gratitude for. We had a great weekend. You can tell Brynn is feeling more and more normal. She was so active and running all around all weekend. I think her face is thinning out and her belly looks smaller already. I guess she would have started steroids last week, so we're 5 weeks out from last treatment. Only this week and next week for Bactrim. Paige has a little Thanksgiving show at school today, so I'm excited to see her little performance. She's telling me she's a pilgram. Some of the other kids are Indians of course. Today, my thoughts are in Pittsburgh with my Dad. My heart is right there.11/19/2007
Mom's entry 11/17/07We had a good, but very busy week. We had our very first parent teacher conference for Brynn on Thursday. I met with Miss Jernigan at 7:30 a.m., fighting the wind and rain. Miss J said that Brynn is right where she needs to be, doing absolutely great. She said it's been great to see Brynn really come out of her shell socially. She's taking the lead in playing some of the time and not just following what her friends are doing. She said that everybody just loves Brynn. Even some of the other teachers will poke their head in the room and ask Miss J, "where is she?" She also said how mature Brynn is. She said she's like the little mother hen of the class keeping everybody in check. I'm not surprised at all. Brynn had a half day on Friday and we raced off to get Paige to school in time. Then, we just hung out together, which was great. After we picked Paige up, the van's battery was dead. I think the DVD player drained it - Brynn and I were watching waiting for Paige (yes, with the engine off). My fault. Luckily, another little girl's Dad gave us a jump and we were on our way. Matt is running the Philadelphia half marathon. I don't know how he does it. I would imagine it feels great to run off energy and certain memories, demons, etc. Anyway, I'm proud of him. Two weeks until Disney. Can't wait. Hi Emily! We miss you. 11/17/2007
Mom's entry 11/14/07Yesterday was Brynn's first off treatment clinic visit. Everything looks great. They checked her urine, complete blood work and physical exam. Urine was fine, ANC 2700, and physical exam normal. Still no reflexes. Brynn was so suprised when her port was accessed, but that it came right out. They just needed to get her blood and then flush it. Usually she's got it accessed for the whole visit. She kept say, "that's it?" This must feel so good for her. We saw Emily and her Mom there - she looks great. I'll never forget when they were both inpatient and Emily was so sick, wouldn't eat at all, and now she's been through a bone marrow transplant and she looks incredible. It was great to see them. Paige and I dropped Brynn off at school. Her class was having lunch. I couldn't believe how loud it was in the cafeteria. Brynn's friend, Ella, was so surprised and happy to see her when Brynn tapped her on the shoulder. After that, Paige and I ran errands until pick up. It was a long day, but a good day. Next month, we're in and out for a CBC. No physical exam. Now, we're counting down to Disney. I'm finally seeing excitement in Brynn's eyes when we talk about it. 11/14/2007
Mom's entry 11/14/07I had to write this down so I don't ever forget. Paige has a friend in her preschool class that wears glasses. The glasses are super magnified so that her eyes look very large. Before we left for school, completely on her own, she put a pair of her pink sunglasses with rhinestones on them on and said she wanted to wear them today so that she and her friend looked alike. She wore them into school and her friend's Mom, in addition, to all the other Mom's were so amazed and touched that Paige had the empathy to do something like that. Paige's friend has been very sensitive and afraid that the other kids have been whispering about her glasses. Paige must have picked up on that and wanted her friend to feel just like her. Really, we're all the same and the differences are what makes us all special. Paige, thank you for your kindness and ability to make all of us feel good. I think you'll be some kind of humanitarian or something. Empathy that had to have been learned from seeing what her sister has gone through. A gift.11/14/2007
Mom's entry 11/5/07Life off medicine is wonderful!! Everything but Bactrim, but that is only 2 days a week. I feel like I already see a change in Brynn. She seems freer to me and happier. And has more energy. Sue, thank you so much for the letter from Noah. It touched my heart and he looks so great. I can't wait until you're at the same point. We'll be cheering you on as well, and we do anyway. Brynn's port is scheduled to come out December 19. We initially wanted it out before our trip to Disney, but the nurse practitioner strongly recommended having it done under general anesthesia. After being in over two years, it can have alot of tissue growth over it and can be a little tricky to get out. And it will be less disruptive for Brynn to just focus on the trip and not have to deal with the stress of the port. She will be stressed about it. But, she'll get through it and amaze all of us like she always does. On the way to school this morning, she was asking me all kinds of questions about the airplane. So, she's already preparing herself for the trip a month away. We don't even talk about it, hardly ever. Anyway, she's doing great! She's reading some words by sight and spelling words that she sounds out and she really loves school. Things finally do feel a little lighter. Our friend Tyree from Camp Sunshine has relapsed, so our heart, thoughts, and prayers are with him and his family. They have a huge support system of Camp friends. 11/5/2007
Mom's entry 10/29/07We had such a great weekend. Brynn did as I suspected Saturday night - right before bed she said, "Mommy, what about my medicine?" Matt told her it was finished and there was no more. She said a few times that she wasn't going to stop taking her medicine and then she let it go. That was it. We were in her room last night before bed and I asked her if she was happy that her medicine was finished. She said, "Yes." And she didn't say anything more and I didn't either. Everything felt lighter this weekend. The girls played nicely together, I had coffee with my friends, Matt ran 10 miles, we had a sleepover in our family room, made Halloween sugar cookies on Saturday, and Brynn wanted to play school all weekend. This week - echocardiogram and EKG on Tuesday for follow-up from the doxyrubicin. Thanks Vicky - I may take you up on the advice about our trip. I already told the girls about the ice cream house. :)10/29/2007
Mom's entry 10/26/07October 26 - This date has been engrained in our heads for the past 2 1/2 years and here it is. I don't know what to feel. Happy, of course, relieved, thankful, but also nervous and a little bit lost. So much has become our way of life and now it just stops. It feels like a speeding car just slammed on its brakes and someone says to get out. And we're standing there wondering which way to go. So, what I picture in my head, is the only way to go. Down the road of a very long and happy life and future full of endless possibilities for Brynn. We will have moments of worry that consume us like they have so often, but I truly believe this is over. It's done and we've made it. Byrnn is a leukemia survivor and she's done. I wonder when this will sink in. I think probably years from now. So much of this week has had such a finality to it. Wednesday, the last day I gave her methotrexate, yesterday, the last day I washed a pill crusher, the last time I cut her 6MP in half, and tonight, the last time I give her chemo. I wonder what she'll say tomorrow night when there's no medicine. I know she'll say, "Mommy, you forgot to give me my medicine." This is so huge for her. She's all about things staying the same and control. I'm expecting some behavior related to all of this, totally normal. Brynn received a golden tube in the mail last weekend and inside it was full of colored confetti stars and it was a declaration from the make-a-wish foundation for her trip to Disney. We received our travel plans, flight arrangements, and a car will be picking us up 3 hours prior to departure. We'll be staying at Give Kids the World resort. Paige wants to talk about it endlessly and Brynn doesn't want to talk about it much at all. With some things, her eyes light up and you can see the excitement, but then she wants to stop. How scary all of this must seem to her. But, everytime, she acts like she can't face something, she rises to the challenge and does it like an old pro. So, this is it. We made it, we're crossing the finish line today at around 9:00 tonight. Thank you for your thoughts, words, and prayers. 10/26/2007
Mom's entry 10/22/07FIVE MORE DAYS OF MEDICINE!!!!!!!! I can't even believe I'm typing that. It doesn't even seem real. Brynn was diagnosed with allergies last week after a chest x-ray and a ct scan of her sinuses to rule out sinus infection. She's doing fine with it without an antihistamine. Paige got a cold over the weekend, but that didn't stop us from seeing Aunt Menie and the cousins. The girls had a blast playing with Nicolas and Antonio and little Mia does not stop. It was so good to see them. Brynn is on a field trip today to Highland Orchards. She was so excited. We left the house and had to go back for a bracelet she wanted to wear to show her friends. Of course we went back. Thanks everyone for your thoughts this week cheering Brynn on. We're so proud of her!!!!10/22/2007
Mom's entry 10/15/07BRYNN TOOK HER LAST DOSE OF STEROID LAST NIGHT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She had some really rough spots this weekend. Things I won't miss about steroids: The glazed over look in her eyes, the sluggishness, the appetite, the veiled threats of wanting a new family and moving away, the puffiness, the sleeplessness, the tired legs, the mood swings. I cried out of happiness last night for her. 14 more days of 6MP. We're also cheering on Gena and Jordyn who are also finishing their active treatment. You're all amazing kids, they all are. You're almost there Brynn! 10/15/2007
Mom's entry 10/11/07Brynn's last vincristine clinic visit was yesterday! Counts were great. ANC 1800, Hgb 12, Platelets 340,000. Dr. Julie did her exam and it was so good that she was the one to do the last one. We spent a long time talking about the month of November, because even though, she's technically done this month on the 26th, November will be a big month. Mid November, need to schedule an EKG and echocardiogram to follow-up from the doxorubicin during delayed intensification, another clinic visit for complete exam, full blood work, urinalysis. And then, a few days after or the next week after, the port comes out down at CHOP. So, we have some big hurdles but she's almost free from medicine. Only 15 more days of 6MP and methotrexate. Last round of steroids started yesterday. Should I SAY THAT AGAIN. LAST ROUND OF STEROIDSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!! Brings tears to my eyes for her. The social worker at the clinic handed me a bunch of literature from the American Cancer Society about survivorship and "your child off treatment" I wish everyone I knew could read it because it said you go through the shock of diagnosis, the feelings of uncertaintly of the future of your child, the stresses of clinic visits and hospitalizations, and then that all somehow becomes your normal for such a long time. Now, being off treatment, everyone wonders why you're not extremely excited. There are fears of being off medicine and entering a phase of that safety net being gone. There is no doubt in my mind that Brynn is going to do great. My therapist has taught me a tool for when I worry about Brynn off therapy. I imagine in my mind something standing beside Brynn protecting her and not letting any harm come to her. I imagine my grandfather who was the most amazing and gentle man standing with Brynn, his arm is around her, and he knows what a wonderful life is ahead of her. I also picture a white horse. It's a long story, but we play this card game, the girls and I, and the one card has this white horse on it. Brynn is absolutely obsessed about this card to the point where she'll cheat to have it. I'm not at the point where I just let her have it. There's something about the horse that is special to her. So, in the days to come, I know that horse and my grandfather will be watching over her, along with all the other angels and prayers that have gotten her this far. Brynn, I love you. I want you to read this someday and feel the love coming through my words. I will write more to you as the 26th approaches. We're almost at the finish line sweet girl. I remember that first week of diagnosis, driving on 76 towards home to see Paige and spend some time with her, and I called my friend and I remember saying, "my girl's sick." Now, I can say, "my girl has made it." Thank you God.10/11/2007
Mom's entry 10/9/07Tomorrow is Brynn's last clinic visit for chemotherapy. And only 17 more days of oral chemo. I just had her methotrexate filled for the last time. Last round of steroids starting tomorrow. It just doesn't even seem real, but at the same time it's amazing to finally be here. Brynn's doing well. Kicked the congestion finally. Should have a date to get the port out tomorrow. Halleluia! 10/9/2007
Mom's entry 10/1/07It's OCTOBER!!!!!!!!!! Brynn's doing much better and we all had a good weekend. Brynn vomited on the way to school this morning, but her teacher just emailed and said she's doing fine. She's constipated. I told Matt before we went to bed that I knew she was going to have trouble with her belly in the morning. Senna's on board. But, again, it's OCTOBER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'm sooooooooooooooo incredibly thankful for her life. I love you Brynn and I love your strength.10/1/2007
Mom's entry 9/27/07Brynn came home from the hospital late afternoon on Tuesday. Her blood cultures were negative and no further shivering or fever. Her ANC count dropped from 2900 to 1680. The oncologist wasn't worried about the drop because 1600 is where it should be anyway. They also did not want to give her the diagnosis of sinusitis because that would mean weeks of antibiotics. So, we're hoping it is viral and will just run it's course. It was so strange being back there. There's a new procedure with VRE status, that until you're cleared that you don't have VRE, you have to stay in your room the whole time. Wouldn't it figure, her VRE status came back negative right before she was discharged. So, we made a few laps around the halls, saw some of the nurses and doctors from her first and only other admission from two years ago and then we were on our way. She's still coughing, but has ben at school. She was so angry at me for taking her to the emergency room. At one point, she had her shoes on and she told me she was leaving. Luckily, the ER door was too heavy for her to slide it or I think she would have been out of there. And she was angry at me for missing school for two days. I wanted to keep her home on Wednesday, but she wouldn't hear it. So, in the past two weeks, it's been clinic visit, lumbar puncture, continued congestion, pinworm infection, chest x-ray, and hospital admission. My stress level has been through the roof, so hopefully, things will settle out. My friend Jen reminded me yesterday that it's only one more month of treatment. I'm counting the days now. And to the hacker that found Brynn's site, I hope you feel good like you've accomplished something. I think you stink.9/27/2007
Mom's entry 9/24/07Brynn's in the hospital. It's been a tough two weeks. Shivering started two days ago at night. Just on and off. Brynn and I drove to the emergency room last night and got here around 3:00. She's in room 3 on the oncology floor getting IV antibiotics. ANC is great at 2800. I'm convinced she has a sinus infection. They took blood cultures so now we wait until those preliminary results are back to make sure nothing's brewing with her port. 9/24/2007
Mom's entry 9/14/07IT'S DONE! The final LP happened yesterday. Brynn did great. They went through with it despite Brynn having a cough. The anesthesiologist listened to her lungs right before he put her to sleep and said her lungs were clear. Brynn giggled a little bit and went to sleep. Everything looked fine with her CSF. Brynn was one of the first kids yesterday in the new day hospital given by Alex's lemonade stand. It's beautiful. Brynn wasn't very happy about it because it was different than the place she usually goes. But, the good news, is that she won't have to see it anymore. Dr. Leahy gave me a big hug and said she'd miss us and to send a Christmas card. Everyone was so happy for us. The day was beautiful and driving down to CHOP, I took all of it in. After the hospital, we went to TOYSRUS and let the girls pick out some toys. We felt like we had to do something. Brynn knows it was the last day to get medicine in her back and even through the steroid fog, she knows what it meant and was really happy. We had a tough night prior to yesterday. Her port was left accessed and she had trouble sleeping, so we were all exhausted yesterday. But, the girls were in bed early and Brynn's off to school today. ON the way home from CHOP, she said she missed school. And today is pizza for lunch, so she's thrilled. Sue, this time next year, we'll be cheering on sweet Noah as he finishes his last LP. Have a good weekend everyone!9/14/2007
Mom's entry 9/12/07Next to last Vincristine clinic visit done. Clinic visits will never end, but after next month, they will no longer involve medication. Brynn's counts were great. ANC is 2890, up a little bit because the lymphocytes are up a bit to fight the cold she has. Paige's cold ended maybe Tuesday and Brynn's started about the same day. Seems pretty mild. They're still willing to go through with the lumbar puncture tomorrow unless something drastically changes. She has just a dry cough and minimal congestion. There's always a chance that we'll get down there tomorrow and the anesthesiologist won't do it. I can't imagine though. They usually don't do more than say hi and explain what they're giving Brynn as I'm holding her. Discussed having her port taken out the beginning of November. We had back to school night last night at Brynn's school. It was really nice to hear Miss Jernigan speak about her expectations, her philosophy of teaching, and how the kids are doing so far. Miss Jernigan said they all love Brynn so much, she wishes she could tie a little bow around Brynn and take her home with her. She also said she uses Brynn as an example for the behaviors she expects. She said Brynn is very mature and detail oriented and very empathetic and caring. There have been no moments of crying or sadness at school. They said she's cautious and doesn't like when things are out of the normal. Things we all knew already. As much as those qualities test me, they're very endearing. Paige is doing great too. She's doing really great things in preschool and so proud of the things she brings home. I'll try to enter something tomorrow after the LP.9/12/2007
Mom's entry 9/8/07I was just doing the dishes and Matt walked over and said, "Do you realize that Brynn's last lumbar puncture is next week?" It sounds unbelievable, not 6 months from now, or 3 months from now, next week. Thank God. What an amazing day that will be. So, Matt and I have been talking and since we're not having a big party or celebration to mark the end of Brynn's treatment, we thought of something that would be really meaningful to Brynn someday when she can understand the magnitude of what she's been through. Between now and the end of October, we're asking those of you who have followed Brynn, who haven't followed Brynn, or anyone that may have been impacted by what she's gone through to send her a card, write her a letter, draw her a picture, anything, a significant poem or picture. We will collect all of these things, put them away in a sort of "time capsule" for her to open when she's ready to know what she's done. Please send to Brynn at 208 Flagstone Circle, Coatesville, PA 19320. We're also asking that Paige not be forgotten in this - enough can't be said for what she has gone through as well. I hope we get a ton of mail between now and October 26, or even after. Someday, I can imagine Brynn opening them and openly feeling the pride that I know she already feels in her own five year old way now. Matt and I both thank you.9/8/2007
Mom's entry 9/7/07Another big week for us. Paige started preschool on Wednesday. She did so good. She just said goodbye and didn't mind at all that I was leaving. When I picked her up she came running out with a little paper crown on her head that she had made. It was so sweet. Brynn had another good week. No issues at all. Her teacher put a note in her folder that said she was doing beautifully. She walks in to school by herself - no more walking her into the room. I'm so proud of her. She's been waiting for this for a long time. My wave of anxiety has passed. Paige is absolutely fine. Thanks Sue for your words of support. Glad to know that I'm not alone with these waves of worrying. It won't always be so acute, I would imagine. Then, last night, Paige of course put things in perspective for me. She was in the bathtub and laid back in the water, crossed her arms over her chest and said, "This is the life." It was the cutest thing. It absolutely is the life - just how it should be. Have a good weekend everyone.9/7/2007
Mom's entry 9/4/07Brynn's off to school this morning - the start of week 2. She had such a good week last week. Last night before bed, she said quietly that she didn't want to go to school. I'm not surprised by that reaction, especially after having the long weekend off. She was fine this morning, other than the little bit of nervous belly I could tell she had. We had a good weekend at Nannie & Pappy's. Paige started with another cold the first night we were there. I couldn't believe it - but when she woke up crying I knew exactly that she had a sore throat. It seems like a very minor one, especially after the last one we all had. She and I were everywhere last week, so I'm not surprised she picked something up. Then, when we all got up on Sunday, she said her leg hurt. That sent me into a tail spin on anxiety that lasted through yesterday. Matt and I were sick thinking could it possibly happen to us again. It was awful wondering if it happened to us once, why couldn't it happen again. Do we have such terrible genes that our other daughter will go through hell. We ended up leaving early because I was so worried. So, in the end, it's crazy to think that there is something wrong with Paige, but understandable how these fears come up after the trauma we've all been through. Paige has been fine, she's walking on it and running, no limp, no waking up through the night in pain, etc. We think she pulled something riding her scooter at Nan and Pap's Saturday night. I'm keeping a close eye and will head to the pediatrician at the first sign of anything. Does anyone else out there think the same way sometimes - worrying about the other child. The girls and I kept busy yesterday which was good for my anxiety. We baked 2 berry buckles and took one to Mom Mom and Ric. The girls were thrilled to see Max who peeked out for a minute to say Hi. Paige has meet the teacher night at preschool tonight and then starts preschool tomorrow. Clinic with last lumbar puncture is next week. 9/4/2007
Mom's entry 8/31/07First week of kindergarten under our belts. Brynn is doing so great. She's so happy. She's like a different kid. She has half a day today, so Paige and I will pick her up shortly after noon. Paige had a blast yesterday at Tami's sister's house - which was a relief because she cried so hard when I left her yesterday. As soon as I walked in the door from work, she couldn't stop talking about everything she did there and how much fun she had. Busy morning here. Leaving for Nannie and Pappy's shortly after Matt gets home, so Paige and I are on packing duty. Have a great holiday weekend.8/31/2007
Mom's entry 8/29Day 3 of kindergarten. Brynn is doing so well. Both mornings her belly has been sick because of being nervous. This morning she asked for Zofran. She said she didn't want to feel sick. Monday when I picked her up, after waiting forever in the pickup line, she fell asleep in the car (which she NEVER does) and then was sooooooo grouchy the entire evening. It was such a long day for all of us that we were glad to go to bed that night. Yesterday was so much different. Paige and I were there early to pick her up and she was so happy and chatty and seemed so grown up already. It's funny though, because we ask her questions and she gives us bits and pieces of information. But, I think she's so proud of herself that she wants to keep it to herself - it's hers and her accomplishment. She asked last night if she could wear the jumper. So, the uniform thing is gone - she's good and really liking her outfits. She's even coordinating which shoes she wants to wear with which outfit. I think I'm doing better too. Paige and I were really out of sorts yesterday without Brynn. It's just so different. We really miss her. Next week will be good for Paige when she starts preschool and will be distracted by that and having a blast making her own friends. This is all good for all of us. Thanks for your notes Frannie and Sue and Stacey! Thinking of you all.8/29/2007
Mom's entry 8/27/07This is a really big day, Brynn started kindergarten this morning. She did so great. Up until yesterday, she's been pretty nonverbal about the whole subject or if she did say anything, it was that she didn't want to go. Last night after her bath, and after talking about how much fun she was going to have, she said, "Mommy, I want to go to school right now." She woke up twice last night. Once for me to tuck her back in and once to go to the bathroom. She was up this morning at 6:30 on her own. She had breakfast, took her Bactrim, and got dressed. I can't tell you all how cute she looked in her uniform. I'll have pictures posted soon. We met her teacher last week who is so sweet. And she'll have the same teacher through first grade - called looping. I'll let everyone know how she does. When we dropped her off this morning, everyone was in their seats coloring and Miss Jernigan was busying around getting the kids stuff organized. The nice thing was not only were the kids in uniform, but all the teachers were in khaki bottoms and orange school t-shirts. The principal said hello and asked how Brynn was doing. Matt and I were able to watch her on a monitor for a little while and she was great. She was sitting at her table with the other kids and her little navy blue mary janes with white socks sticking out from under the table touched my heart for some reason. She took a picture in for Miss Jernigan that she drew last night. So, it's also a big day because yesterday was the two year mark that we received Brynn's diagnosis. Matt and I will never forget waiting through an entire weekend for them to determine if she had ALL or AML. Never in our lives, hoping for the better type of leukemia for our daughter. So, I haven't been teary all day until now when I think back to that time and see how much she's overcome and grown. Brynn, I continue to celebrate you and your strength and the positive outlook you ALWAYS have on things. I love you. Someday you'll read this and you know when you see my words how proud I am of you. 8/27/2007
Mom's entry 8/17/07Everything went well at the clinic on Wed. Counts are great. ANC 1600, Hgb 11.4, Hct 351,000. Brynn had a really rough time with her port being accessed. They switched the kind of needles they're using and they just don't go in as quickly and as easily. She was really crying. I was right at her head trying to keep her calm and sweet Paige was just playing on the floor. After it was over, Paige said to the nurse, "excuse me, but I think Brynn just doesn't like those new clickers." I wonder what she must think hearing her sister cry like that. I think it makes their bond even closer. Only TWO MORE TIMES. I finally feel like the end is near. It feels so close now. Next month is last lumbar puncture. It doesn't seem like anyone makes a big deal out of it because I'm sure they've seen kids relapse and it ends up not being their last time. So, that's really OK, because we've chosen to not make a big deal out of it either. It seems a better way for Brynn to just let it slide into the past quietly. Some people have big parties, etc. Part of me would love to so we could feel like our whole family is running through the tape of a finish line. And we could have all of our family and friends there cheering for us, but we feel that inside without all the hoopla. And we know that everyone is cheering for us anyway. Only 9 days until kindergarten starts. So many big things going on. I just talked to the woman from the make a wish foundation. We're tentatively planned to travel to Disney on December 3rd. I can't wait. Nothing planned for the weekend. Day 3 of steroids here and Brynn is doing great.8/17/2007
Mom's entry 8/13/07I think we finally beat the colds. This is the first day that I'm feeling back to normal and Brynn didn't cough when she woke up. Whew - it was a rough one. Clinic day on Wednesday and the start of five days of steroids. And kindergarten starts in just TWO WEEKS!!!!!!!!!! I can't believe it. The start of kindergarten is just one day shy of the two year anniversary of Brynn's diagnosis. I still have flashback memories of that day and those first few days. My amazing girl has come through this so well. We're all so proud of her. She'll do something someday with all of this - I know she will. And if she doesn't, we're happy to leave it behind (as much as possible). 8/13/2007
Mom's entry 8/7/07We had one of the roughest nights we've had in awhile. I felt terrible with my throat and cold and then Brynn was up most of the night. It's classic when she gets a cold. She swallows the mucous and then gets sick. She vomited twice and then took Zofran. I think we slept from around 4 until 7. I remember our candles in the windows going out and I knew it was 3. Everyone is doing well this morning. Paige got the best sleep of any of us. It will all pass. Just keep saying, please no fever. We received all of the information from Brynn's school over the weekend, her teacher's name, the supplies she needs, her homeroom number, etc. I'm going to wash her uniforms this week and have those ready to go. We're supposed to travel to see Nan and Pap this weekend, but we'll see how the rest of the week goes. Hi Emily! Thanks for the sweet entry. We miss you too! THanks Mom Mom for the dinosaur books yesterday - they were good reading before bed. Soon approaching the two year mark that Brynn was diagnosed. Our sweet girl has come so far. Someone at the clinic the last time said how mature Brynn is for her age. She's amazing to me. She keeps us all in line. :)8/7/2007
Mom's entry 8/6/07We're all sick here. Summer time colds. Paige started on Thursday night and me over the weekend and Matt and Brynn last night. I stayed home sick because my throat hurt so badly this morning to talk. Better to just take it easy and get lots of fluid. The girls seem good. Better this week I guess because we have clinic next week. 8/6/2007
Mom's entry 8/2/07We're having a good week. Brynn did so great on her steroids this month. I was just reading back over the guest book entries and have seen how very far we've all come. Brings tears to my eyes to look back at all the support and love we've been given from so many. Not a day goes by that both Matt and I know we are surrounded by prayers and strength coming from so many. And Uncle Doug, Brynn still has that serious furrowed brow when she gets determined about something. But, she also has the greatest laugh and biggest smile through all of this. She was watching Jakers last evening and laughing soooo hard. A deep belly laugh. When she does that, I always thing in my head that that laugh is healing her body. The girls and I went to Marsh Creek's swimming pool yesterday. We had a blast. Brynn loved it and kept putting her head under saying she wants to swim. I guess it's time for swimming lessons. Brynn starts kindergarten this month. I can hardly believe it. I read all of those happy birthday entries for her 4th birthday and here she is over 5 1/2. We miss all of our friends from camp sundshine. Brad, we hope you're OK in Minneapolis. Thinking of you. Halley & Matt8/2/2007
Mom's entry 7/30/07Brynn's done great on her steroids this week. She really fought through some tough moments. Walked around our neighborhood with me last evening, even though her legs were telling her no. I can't even imagine how much strength she has inside that she pulls from. I admire her so much for what she's doing and what she has done the past two years. Almost coming up on the two year anniversary. Brynn has lost both of the reflexes in her knees from the Vincristine. I hope they come back after she is off treatment. I think this is a pretty common occurence. I'm trying to do everything I can to get her a trampoline to exercise her joints and muscles. I'm a Mom on a mission. After what she's been through, I want to give her the world. Thanks Doug for posting the Camp Sunshine pictures.7/30/2007
Mom's entry 7/26/007Everything went well at the clinic yesterday. ANC was 2600 - a little high, but not enough to increased chemo meds. I'm thinking it's because she had that extra week between treatments with us going on vacation. I had a nice talk with PattiAnne. She went over the follow-up road plan for when Brynn comes off treatment in October. Monthly CBCs for the first two years, every three month, physical exam, and then I forget what happens. There's so much to absorb. She'll continue Bactrim for a few months until her counts recover to help protect her from pneumonia. After three years, I think we begin to be followed by the survivor team down at CHOP which is a group of physicians that cover all aspects of their lives. Endocrine, cardiology, psychosocial support, etc. Matt and I were talking last night and we can't believe we're actually at the point that we're talking about this. We came home, had lunch, walked a gift to a friend in the neighborhood that had a baby, and then we were back in the car to Collegeville to take Paige to her 4 year well check. Always good to see Dr. Gazdick. Everything is great with Paige. Brynn took a picture for her that she drew. I was wiped out last night. These days are so draining for me, but I slept well and have a vacation day from work today. Tami comes back next week which is good because the girls really miss her. Most likely will be a quiet day here at home. Have a good day everyone!7/26/2007
Mom's entry 7/25/07We're on our way to the clinic in a short while. I'll post after we're home. Paige has a well check this evening - busy day. 7/25/2007
Mom's entry 7/21/07We're home! It's Saturday morning and we pulled in last night at midnight. It was an awful drive, I didn't think it was ever going to end. But, we're home and it feels so good, even though we're sad to leave the oasis we found at Camp Sunshine. It was the most wonderful week we've had in a very long time. We met so many nice families who's kids are at all stages of treatment for ALL and other lymphomas and a few rare cancers. Wed and Thursday it rained on and off almost the entire days, but we were able to fit some stuff in between the showers. Wednesday there was jewelry making for Moms and Dads and the kids joined in too. Paige and I made some bracelets and then Brynn joined in with making a bracelet and a necklace. Sandy, on the of the volunteers, later showed me how to make them on my own. And I made a sterling silver wrapped pendant. Wednesday evening, they had a movie night and magician for the kids and a formal dinner for the parents. It was so fun and the food was amazing - you'd never know it was made in a camp cafeteria. They had cloth tablecloths and napkins, candlelit centerpieces made by the kids and the end of the night ended with karaoke. It was my first exposure to karaoke and it was hilarious. This one guy you never would have expected got up and sang a song to his wife for their 10th anniversary, "Girl, you really got me now, you got me so I don't know what I'm doing." All the guys got up and did, "I am woman" and the women did "girls just want to have fun." The entire week, the parents were split up into teams, spouses split up, and their were little blooper competitions all week and a final trophy awarded to the winning team on Thursday night. Thursday morning, I got up and had a Reikki treatment. It was amazing. I never had one before, but definitely think it may be something to continue. While the practitioner was over my heart area, I felt this incredible release and all I kept thinking was releasing the pain I've felt over the past few years. After my treatment was over, she said that while she had her hands over my heart area, she felt so much energy it almost lifted her up. She had tears in her eyes and said that she felt so many angels surrounding me with their love. And the one angel's name was Angelina. The only Angelina I'm familiar with is Angelina Ballerina and Angelina Jolie? She gave me a rocked that was blessed and told me to carry it with me and use its energy when I need to release like I did. Thursday, our family went canoeing before lunch and Brynn and I went out in a paddle boat. She had so much fun. She had her hand in the water the whole time and just kept saying how beautiful it was and how peaceful. I'll never forget that moment with her. Lake Sebago is beautiful - 55 square miles. I attended a parent's discussion on Thursday. It was sad some of the time, but sharing in these parents' experiences was important for me and healing in so many ways. Matt didn't want to attend, so he went for a run. Thursday evening was the final night's ceremony. All age groups, including the parents groups put on skits. It was really nice and I'm pleased to say that my group, called the 4 S's won the coveted love trophy. I'll have it on display here until we go next year and Matt and I will battle it out again. :) They had a slide show with memorable pictures from the week and handed out a CD of 800 pictures on our last day checking out. I urge any of you to look into volunteering at Camp Sunshine. You don't have to have a member of your family affected by cancer. You can go with your kids, spend an amazing week getting to know great people and your kids would just participate in their respective age groups. They have volunteers for the arts & crafts, for the marina, for the kitchen, to help with all the different age groups, etc. Visit www.campsunshine.org. It will be a life changing experience, as it has been for us. We do think that next year, we may fly. :) Doing laundry today and just taking it easy. I'll get pictures up as soon as possible. 7/21/2007
Mom's entry 7/18/07We're here in Maine and we're having a great time! It's awesome here at Camp Sunshine. We can't say enough about the staff and volunteers here. There are 2 volunteers per child - it's absolutely amazing. I don't think Brynn and Paige have had this much one on one time through the entire day in a very very long time. The first day of camp they made it clear that this week is about the parents and giving the parents a break from everything going on in our lives surrounding treatment and just the every day stresses of being a parent in this realm of cancer treatment. So far, Matt and I have rock climbed a wall that's over two stories. I didn't think I was going to make it and the fear of heights kicked in for me about half way. But, I did and Matt did it easily. We took a paddle boat out on Lake Sebago the other day and it was absolutely beautiful. Yesterday, we participated in some challenge course events for the parents. The guy leading the challenges, Patrick, commented on how so many of the activities are metaphors for how we take on things in our lives. He commented that I seemed to take my time and really focus on the task at hand. Made me feel good. It's a little rainy today, so Matt and I have some down time. They have a whole section of yarn and knitting needles, so I started yet another scarf. The girls check in to camp every morning at 9:00. We pick them up at 12:00 for lunch and then they're back to camp at 2:00 until 5:00. So, that's 6 hours of time for Matt and I. We don't know what to do with ourselves. :) So many nice families here. We met a family from West Chester who is volunteering here for their fifth year. They're one twin daughter, Sam, had ALL at age 9 and is doing fine. Really nice girls, both 19 now. Tonight is a formal dinner for the parents and karaoke. :) That should be really funny. WE check the girls in at 6:00 pm and are supposed to pick them up at 10:00. I can't imagine the girls making it that long. We'll see. They're both really tired. The drive here was very long. In the car over 10 hours. They each had one major breakdown and crys that their butts were tired. :) Anyway, we miss everyone and will be home sometime late Friday night. We're having a great time. 7/18/2007
Mom's entry 7/14/07We're leaving for Maine at 4am. Everyone is well and we're ready to go! Can't wait. Brynn's giving us grief that she doesn't want to go. It's completely in line with her wanting to keep things in control. She'll be fine once we're on our way and there. I haven't packed much at all, so it will be a busy day. Our first vacation in 2 years since Brynn was diagnosed and got sick at Ocean City, MD. I'll never forget that vacation. Now this vacation will hold so many special memories - I just know it. The Rice's are leaving at the same time. So, we'll either meet up on the road or when we're all pulling into Camp Sunshine. I'll take my computer and see if there's internet service. Will take lots of pictures! Love to you all.7/14/2007
Mom's entry 7/9/07It was a really good weekend - felt really busy and the girls haven't been getting into bed until 9:30 or later. Out for walks or catching fireflies. How can I blame them. The sight of Paige running around with her arms outstretched trying to catch those fireflies is priceless. Paige was in her bed reading on Saturday night until 10:30. She said her monkey felt hot. :) And Brynn was up standing by my side last night at 4:00 and said for me to not forget to wake her up before I left. They went with Tami to dunkin donuts for breakfast this morning and I think she was so excited she could hardly stand it or sleep. :) She shares my love of donuts. This time next week, we'll be in Maine hopefully. We're getting very excited to spend the week with others going through what we're going through and to relax and have fun. Ian had treatment last week and Brynn is due for treatment the week we're away, so it's being pushed back a week so there will be 5 weeks between treatments. But, then the next month is catchup and will be 3 weeks before treatment. That won't be a good steroid situation, especially for starting kindergarten. But, we'll get through it. We always do. At least, Brynn will be feeling good and her happy self for Camp Sunshine. I'm sure our car will be packed so full - bursting most likely. 7/9/2007
Mom's entry 7/2/07It's July! Yeah - only two weeks until we leave for Maine. Brynn & Paige are doing well. We enrolled Paige in preschool for the fall. She was so cute when we visited the school on Friday. She said that she really loves "her new school". I can hardly wait for her. I think it even got Brynn excited about school. We have yet to see her new school since construction is still underway. It was a good weekend. Brynn was a little grouchy all weekend - hard to see if it's the tail end of steroids or just normal five year old stuff. Matt tell me that I get the best and worst of it when I give him the look that I can't take another minute. I know he's right. Have a good holiday everyone! We're going to watch fireworks on Tuesday evening. Oh and we made s'mores last evening in our chimirea. That was fun. 7/2/2007
Mom's entry 6/29/07Everyone is doing well - Brynn made it through this month of steroids with minimal anger, etc. Other than that, things are status quo. Thanks Aunt Kathie for your nice note. Sue, Brynn's hair is amazing and she's so possessive of it. I find her touching it and twirling it all the time now. I understand why she doesn't want to put barrettes in it - I think she likes feeling the movement and actually likes feeling it in her face. Have a great weekend everyone. Enjoy the beautiful weather after this oppressive heat.6/29/2007
Mom's entry 6/22/07Lumbar puncture went well yesterday - everything looked good. Brynn did great as usual and we were in and out unusually fast. And traffic both ways was OK. ONLY ONE MORE!!!!!!!!!!!!!!!!!!!! I can't believe we're saying that. Brynn and I were so tired yesterday afternoon, we laid on the sofa for hours it seemed and both napped. I never do that and really never does Brynn. It felt so good. I just took in the moment holding her and thank God for keeping her free of leukemia. She's doing so great. Day 3 of steroids - dose was increased on Wednesday. Have a great weekend everyone! Sue and Rakan we'll be counting down with you guys this time next year - believe me! 6/22/2007
Mom's entry 6/21/07It's not quite 6:00 am and everyone is still sleeping. Everyone will be up soon and we'll be on our way to CHOP. Clinic went well yesterday. Brynn's counts were good. Hgb 11, Platelet 326, ANC 1100. Monocytes were 10 making me think she had been fighting off a virus over the past few days. Brynn left her port accessed overnight so it wouldn't have to be reaccessed this morning. The poor girl was so bothered yesterday. She walked around the house most of the day holding it and thought it felt loose. So, last night before bed, we put the extra bandage they sent home with us on top of the other one. Then, she wanted to put some Dora bandaids around the edges to make it even tighter. AFter they were on, she thought they were too tight. She had a little meltdown, but we figured it out. She and I were up most of the night. She kept asking if it was morning yet and the bandage was itching her. But, Matt and I are up having coffee and ready to go. This is such an event for Paige and really for Brynn too. AFter today, one more lumbar puncture. I can't believe I'm saying that. It doesn't seem possible. Yesterday, we got home from the clinic and I was ready to give Brynn her steroid and realized I didn't have the right strength of dex, so we got back in the car and went to the pharmacy. STeroid dose went up. It was a long day, but we're all good. Check in later after the LP.6/21/2007
Mom's entry 6/18/07We had such a nice weekend. We spent the day with the Rice Family in Newtown on Saturday. The kids had so much fun and Matt and I did too with Belinda and Mike. The kids went swimming, caught tadpoles & frogs, went swinging, watched movies, on and on. Brynn's finished with treatment in October and Ian finishes treatment in November, we can all hardly wait at this point. We drove home around 7:00 with two tired girls and Paige had fallen down and skinned her knee right before we left, so she had trouble taking bath, etc. But, despite, the meltdowns before bed, it was so worth it for the wonderful day. And Sunday was Father's Day, much more low key than Saturday. Clinic on Wednesday and CHOP on Thursday. Have a good week everyone!6/18/2007
Mom's entryEveryone's doing well and having a good week. Brynn's already preparing for her trip to CHOP next week for her lumbar puncture. She said to Paige yesterday, "You know Paige, this is the next to last time I get medicine in my back." Paige put up her hand and said, "Give me a high five for that sister." It totally cracked me up. They're such buddies and as unpleasant as those days are, it has become somewhat of an event for us. I'm taking names now for anyone that wants to be at the hospital for the last one in September? :) Have a good weekend and Happy Father's Day to all the Dads out there. Matt, thanks for the best Dad to our girls I ever could have imagined. They're so lucky. As am I. Frannie, I googled the plant and saw how pretty it is. Thank you for thinking of her in your hope garden. It's working. 6/14/2007
Mom's entry 6/7/07Everyone's doing great. Paige's birthday was yesterday - #4!!!!! Can hardly believe it. I worked all day and Matt was home. I took a class for the past 2 days with some of my Merck friends. It was good to spend time with them out of the office and catch up. Tired now and getting ready to get the girls in bed and then myself hopefully soon after. Have a good weekend everyone!6/7/2007
Mom's entry 6/3/07We've had a really good weekend, very relaxing. I'm feeling much better. And we're making progress with the school uniforms. We went from her yelling that she was in no way wearing them to trying some stuff on by the afternoon. It will help her this summer when we go to meet some of the kids that will be in her class. Everyone is doing great. Frannie, I'm so glad the plant in your hope garden is doing great. Brynn is doing great too. I'm curious what kind of plant you picked for her. She loves plants and flowers. They filled my little bird bath yesterday with pansies and impatients. It looks so pretty. I'll try to get a picture posted of it. We bought this bike trailer that hooks on the back of my bike, mostly for Paige, when we go on long rides. Brynn can do long rides on her bike, but Paige struggles on her little trike. So, anyway, we've been testing it around the neighborhood this weekend and it is hilarious. We have hills on either side of our house and coming down that hill, I think the whole neighborhood probably hears them giggling and screaming - like a roller coaster. I read something that nothing is better to heal the body of anything than laughter. We all got plenty of it this weekend, which was good. Love to you all.6/3/2007
Mom's entry 6/1/07It's June, that means five more months. Matt said the other day that we're down to one hand. Thank you God. I feel guilty saying that knowing that our friend Noah has another year. So very unfair. All of it is, but so are so many things in life and not for me to say. Brynn's tooth finally fell out yesterday. She was so happy and relieved. It had really been bothering her, but after it was out she was crying and laughing at the same time. And she was thrilled that the tooth fairy came last night. I still can't believe she's old enough to lose a tooth. I've been having a lot of panic anxiety since last week. I don't know why I'm reacting this way, but I'm doing a little better. I have power over my thoughts and just have to control them. I really think that this time last year I was completely numb and going through the motions and now I'm finally feeling everything and those memories and feelings are so overwhelming, painful, happy, stressful, all of it. And the thought of being done with medicine is also a little scary. So many of you are probably thinking "what?" But, when our lives have been this way for so long and moving on to the next phase is a huge change and letting go and feeling "normal" - it's just facing the unknown I guess. It's all good and I'm thankful for everyday. I got Brynn's uniforms this week for school. I'm waiting to bring that up. We've talked about it and she hasn't been too receptive. But, they are really cute. Little khaki jumpers and scorts, hunter green polos and turtlenecks and white peter pan collar blouses to go with the jumper. She's going to hate all of it. :) I wouldn't know what to do if she didn't resist me on stuff. :) Have a good weekend everyone.6/1/2007
Mom's entry 5/23/07Clinic went well today. ANC is 1200, Hgb 11.3, Hct 300,000. We waited forever, things were really backed up. Dr. Julie did Brynn's exam and said everything looks great. Steroids started as soon as we got home. We had a good day. Went bike riding in the development and played outside for most of the afternoon. Both girls were real tired tonight, little bit of a meltdown from Brynn. Too early to blame it on steroids, just plain tired. :) It's been just over a year since our friend Bradley passed. He touched so many of our hearts. I don't think I'll ever forget listening to Woody in his room and his quiet strength that we all felt. And the friendly smiles from his Mom and having dinner together the one night in the family lounge. Just me and Brynn and Eileen. Our prayers continue to be with the Caraker family and the Worth family. Frannie, you always made me smile knowing that we were newly diagnosed and scared. You and your sweet angel Anthony continue to be in our hearts too. Love to you all. 5/23/2007
Mom's entry 5/22/07Last night when I was giving Brynn her medicine, she laid down and said for the first time on her own that she can't wait until Halloween. She's never said that before. We always say that she'll be done with all her medicine by Halloween this year. Then she said it's not fair that she takes medicine everyday and Paige doesn't take medicine at all. Later, Matt and I were talking and he said while Brynn was talking to me, Paige was going to the bathroom and said when Halloween comes, will we throw everything away? Matt told her "Yes!" Matt and I both agreed that day will be one of the most happiest days of our whole lives. Clinic tomorrow. I got email confirmation yesterday from the principal of Brynn's school that she has the perfect teacher picked out for Brynn. I'm really happy with everything we've received so far from the school. The girls had a blast with Tami yesterday. When Matt got home, Brynn asked if he could go upstairs and change clothes awhile so Tami could stay a little longer. :)5/22/2007
Mom's entry 5/20/07I meant crazy nest the other day in my entry about Brynn's sweet hair. Paige said tonight that she thinks Brynn's hair looks almost like her old hair. 5/20/2007
Mom's entry 5/20/07We had a good weekend. Mom came down on Friday and the girls ear appointments went well. I think I wrote that already. We were going to do the Relay for Life, but decided at the last minute really to not go. We've been working so hard to keep things normal for Brynn and when we would talk about going, she would say she didn't want to go. The Relay for Life is such a moving and inspriring event, but it's something that also singles Brynn out as a cancer survivor. And at 5, she doesn't know what it means to be a cancer survivor, she just knows there is something about her that makes her different than other kids her age. So, we ordered pizza and stayed in. On Saturday, Brynn had kindergarten testing. Almost 6 pages of questions. Brynn did so great. She was scared in the beginning and cried when the teacher tried to take her back to the testing area without me. So, I went back and within minutes, she warmed up to the teacher and was answering her questions. I went out of the room with the teacher that took us in to sign paperwork and we were able to watch Brynn from another window without her seeing us. She did so good. She was laughing and smiling and answering the questions. I was also able to talk to the principal and ask her about some of my concerns and she was very receptive and promised that Brynn would have a wonderful experience there and she already had a teacher in mind for her. It was a really great atmosphere and everyone was so friendly. I also signed Brynn up for some morning summer get togethers for the kids to get to know each other before school starts. I'm so happy for Brynn to finally be back in school and have lots of friends. Now, we'll gently approach the uniform topic. :) Matt and I went out to dinner last night and had a nice time. The last time we went out to eat at this particular restaurant, I ended up havine tears most of the dinner. Last night, I didn't cry at all. I'm making progress. Mom left early this morning to go to Evan's award service. We had a nice visit and today was nice day just doing stuff around the house. Brynn has clinic on Wed. 5/20/2007
Mom's entry 5/18/07Brynn and Paige both had ear appointments today with Dr. Tom. They both had tubes put in back in 2005. Dr. Tom said we hadn't been there in awhile. I said, that was true, thinking to myself that we've had a little bit going on that ears were the last thing on my mind. But anyway, both girls look good and funny enough both their tubes on the right are out and both tubes on the left are on their way out. We're to go back in 6 months for another check and most likely they will be out. Mom is here which was a big help. We went to Target afterwards to pick up a few things and then back home to walk Chamois. Brynn being with Chamois is a good thing. The more exposure she has to dogs the better. Tomorrow we're to go for some kind of "testing" for Brynn for kindergarten. Should be good. Hopefully that will go well without anything major. Amazingly we're back at the clinic next week for treatment. This month has gone by so fast. Better fast because that's getting us closer to the end. Yahoo! Have a great weekend everyone. Thanks for the pictures Uncle Doug! It's amazing to see how Brynn's hair grew from Christmas to that first picture of the back of her hair. I usually call it the crazy next because it's curly everywhere and she doesn't want anything done to it. She says it's her hair and she can do what she wants with it. I have to agree and would probably be the same way if my hair had fallen out. 5/18/2007
Mom's entry 5/16/09Last night I was making Brynn's medicine and Paige asked me if she could have one of the syringes I use. I gave her one and she went into her room. She was quiet for awhile and I walked in to see if she was sleeping. She was so cute - she was up in her bed doing something. When I asked her what she was doing, she said quietly, "I'm giving my baba her medicine. I already gave monkey his medicine." I told her she was a good mommy to all of her friends. I hope she knows that she won't have to take medicine everyday like Brynn. It makes you wonder what goes through their little minds. I've been having a little bit of a rough week feeling alot of anxiety monday and tuesday and then feeling sad today. I talked to Dianne tonight and she said I may be having an anniversary response to everything that was going on at this time last year. She said that our minds can trigger things that we aren't even aware of. She said that this open wound that I feel is slowly healing, even though it doesn't feel like it is. It's just difficult to take time out to let it heal when we're still so in the midst of it. In time, things will start to feel lighter. But, this wound that I feel is also there from the loss that the Worth family and the Caraker family feels every day. All of this has been so profound in my life. I feel like I have grown so much as a person. I spent some time tonight reading back over this journal to remind myself of what was going on at this time last year. It reminded me that we've come so far and are so close to being done with treatment. Then, the next phase starts of monthly CBC's and reaclimating ourselves to "normal" life. Brynn has her visit to school on Saturday and "placement testing". We're not making a big deal out of it because she'll worry about it. Brad, thank you for your entry. We miss talking. Please try to call again. Aunt Dee, thank you for your kind words. Frannie, happy mother's day to you. Have a good rest of the week everyone. 5/16/2007
Mother's Day I love this day and always have since I was pregnant. Mother's Day is such a great day filled with love and joy because of my kids. Even though everyone wants the day to be about me, I felt like the day is about Brynn and Paige because without them and the blessing they are to me, I wouldn't be a Mom. We woke up and Matt made all of us breakfast. He was like a short order cook making all of us something different. Then, I cleaned our bathroom (nothing very Mother's Dayish, but still had to get done) while the girls and Matt were doing something secret. They surprised me with pictures they both made of their handprints made into flowers and they each wrote "Happy Mother's Day, Love Brynn; Love Paige". Then, they gave me presents. They got me a hummingbird feeder and a little bird bath that I fell in love with at Waterloo Gardens. Our back yard is so pretty and adding these little touches of our own makes it feel so nice. Now, I'm sitting here working and the girls are sleeping and I'm exhausted. Being a Mom is the greatest and the hardest thing in the world. My kids are getting so big and I couldn't be more proud of them. They amaze me every day.5/13/2007
Mom's entry 5/11/07Brynn vomited this morning. I could tell right away when she woke up that she wasn't feeling well. But, she's eating now and I think the nausea has passed. We tried Zofran, but I think it came up. They played so hard outside with Tami yesterday and I'm thinking she didn't have enough to drink. But, who knows. Happy Mother's Day this weekend to everyone! 5/11/2007
Mom's entry 5/10/07We're in! I'm so excited. We'll be attending Camp Sunshine in Maine from July 15-20. And our friends the Rice family will be there at the same time. I can hardly wait for July and then October! 5/10/2007
Mom's entry 5/9/07The girls and I had a great day today! Right after lunch we went to Waterloo Gardens and walked around and picked out a few plants to put in. The girls loved all of the pretty fountains and found it fun washing their hands in them. Then, we went to Kerr park and had the whole park almost to ourselves. It was great and they had a blast running around for a long time. Then, we went to Kimberton to pick up their yogurt and a few other natural foods we like to get there. What a busy few hours we had. Then, we got home, planted our plants, took a tub before dinner because we were all filthy. Had dinner, then realized we didn't have enough methotrexate for Brynn's dose that night, so we all climbed in the car to the pharmacy and caught it right before they closed at 9. Got home, did medicine, and then Brynn tried to stay up for the American Idol results show. She's so funny. She didn't make it. Now, they're both sleeping and Mom's tired from a very busy, but fun day with my sweet girls. 5/10/2007
Mom's entry 5/5/07Brynn has a loose tooth. I couldn't believe it. She told me she had a "little place" in her mouth last night. Sometimes she gets little sores and that's what I thought it was. When I looked in, there was a little tooth cutting through right behind one of her lower front teeth. She's not very happy about it. This coming from the girl that doesn't like anything different or any amount of change. We had a good weekend. Matt ran the Broad Street run this morning in Phila and the girls and I drove to Dunkin Donuts in our pajamas this morning because Paige slept so good. :) The girls thought it was fun. We went through the drive through. Brynn's eczema is reappearing as the steroids are wearing off. It finds different areas it seems to really flare. No appointments this week. Have a good one everyone. Thank you for your continued thoughts and prayers. Brynn's doing great!5/6/2007
Mom's entry 5/3/07Brynn has done great this month on and coming off the steroids. Her biggest complaint the past few days is trying to poop. She has been constipated. But, she called me at work today to tell me that today was the day. The big one came. :) It cracked me up. She said to make sure to call Daddy and make sure he knew. It's been a long week and I'm glad the weekend is almost here. 5/3/2007
Mom's entry 5/1/07I can't believe it's May already. Another month closer. Paige had me up all night last night it seemed. She cried before she went to sleep. She said she saw a bug in the basement and she was frightened that he was going to come back. Poor girl. And Brynn's belly is sick this morning. The steroids are so hard on her belly. In addition to everything else. And when I made the coffee this morning, I forgot to put the pot under. So, there was coffee running everywhere. The funny thing is that I've done it before. In my fog of functioning this morning, I guess I just missed the pot part of the coffee process. Anyway, Brynn had Zofran and now she's eating cheerios. I have a dentist appointment this morning and the girls are going with me. I'm hoping for the best. 5/1/2007
Mom's entry 4/29/07Brynn's doing so great. She hasn't had one crying episode. We had a good weekend, spent alot of time outside. Brynn was on her bike alot today and fought through alot of rough spots. It's amazing to see how she's adjusted and matured from taking steroids at 3 1/2 until now. She really knows and I think can find ways to distract herself. Have a good week everyone!4/29/2007
Mom's entry 4/25/07Appointments are over for the week. Dr. Danielle was really happy with how the eczema is looking. She thinks it would be gone if Brynn wasn't taking systemic steroids every month. It's a shame for Brynn, but it doesn't bother her at all. Other than the regimen of creams, etc. Clinic went well today as well. Brynn's counts look great. ANC was 1900, Hgb 11.4, Hct 34.3. Everything looks great. Exam went well. PattiAnn really encouraged Brynn to get on her bike and use her leg muscles. Being on steroids this long can really cause damage to the muscles especially in the legs and hips. She's really been resisting riding her bike lately, but after we got home she was on it. It started to rain as we got home, so she biked in the garage. Day 1 of steroids today. Last night I was thinking that the few days before clinic, I get a glimpse of what "normal" life would be like for us. Brynn is completely herself. She's happy and light spirited, plays great with Paige. Oh, I can't even imagine 6 months from now what it will be like. By then, Brynn will be adjusting to kindergarten and we'll be entering the next phase of our lives. We're still waiting to hear about Camp Sunshine. Keeping our fingers crossed because our friends the Rice family applied for the same week. That would be so wonderful because Belinda and I have really connected. It's so nice to have someone understand what this lonely walk is like. I'm hoping for an "easier" steroid month like the last one. Off to get the girls in the tub. By the way, Brynn's hair is so beautiful with ringlets now that it's getting so long. She still is against a barrette or anything to hold her bangs out of her eyes. You have to admire the determination. 4/25/2007
Mom's entry 4/22/07We're back from our visit to Nannie & Pappie's. We had a really nice visit. I'm convinced now that all of Brynn's belly stuff last week was because she was nervous about going and being in the same place with a dog. She was so frightened to see Chamois, but over the course of the weekend, she was OK. She never liked when Chamois got up suddenly and started to walk, it really showed that she was still cautious, but she and Paige really didn't leave her alone the whole visit. We went to the circus on Saturday and it was great. It started out a little rough for Brynn. The loudspeaker was so loud and she's just not used to being in crowds like that. But, once the tears ended and the initial shock wore off of the whole environment, she was clapping and dancing to the music by the end. At one point, I was sitting there just taking in the moment, looking around at all the families with their kids, and tears came. It all seemed so simple to them, but to us it was momentous. A hurdle for all of us. For Matt and I, a struggle to be around people and germs and the unknown that could potentially cause Brynn harm. For Brynn, it was losing control of her very guarded environment and the unknown. But, the most important thing for her was to realize that something that seemed scary and unpleasant, she could overcome and actually have fun. And she did it. We're so proud of her. And sweet Paige just took it all in and was so good. She honestly knows. She couldn't be better, I know I say that all the time. As much fun as we had, it's always good to be home. The girls played all day today while we did our normal Sunday stuff. Busy week. Tuesday, Dr. Danielle (dermatology) and clinic on Wednesday. 4/22/2007
Mom's entry 4/17/07Brynn's belly isn't sick this morning! She asked for Zofran before bed last night, but I said no. I had called the clinic yesterday and they said to use it just when she was feeling sick, so we crossed our fingers and hoped for the best. I really think she's so excited and worked up about our visit to Nannie and Pappy's this weekend. She's been talking about it and talking about packing since last week. I've learned my lesson now about saying something right before it happens. It's been so long since we've visited that this is such a big deal for her and for all of us. She told me this morning that she's nervous that Chamois will lick her face when we get there. I told her that Nannie and Pappy would keep Chamois out on the porch until she calms down. This will be so good for her to be around Chamois with her dog fears lately. Dianne feels it is directly related to leukemia. I was thinking yesterday that it seems that Brynn has forgotten so much of the earlier days of her treatment and maybe even her hair coming out. I'm so glad. Even though she still refuses to put a barrette in, that is total control that she loves feeling her hair move and it's her own to do what she wants. I'm glad she has that. Have a good day everyone. It will already be better here without waking up with vomiting.4/17/2007
Mom's entry 4/16/06Brynn has been taking oral chemotherapy everyday now for almost 20 months. Almost half of her life. Sometimes that hits me like a ton of rocks. Brynn's been having alot of trouble with her belly this past week. Almost every morning she's been nauseous and vomits. Last night I gave her a Zofran with her meds before bed and she wasn't sick this morning. She seems fine the rest of the day then. But, like usual, it causes all kinds of worry and guessing and speculation on Matt and I's part. I actually laid in bed on Sunday until 1:30 when Brynn told me to come get out of bed. That was after waking up early with her because of her sick belly and being up the past few mornings early because of her sick belly. I just needed a break. It felt so good to just lay in bed. I think I fell asleep for awhile, but I felt like I could have just stayed there all day. We'll see how things go tomorrow morning. I put my yellow bracelet back on because it feels like things have been difficult since Matt and I took them off. Call it crazy, but I'll do anything to make things easier. No one wants to jinx anything to do with what's going on in our lives. I must sound crazy with this entry. How to explain how the smallest things can set off the worry.4/16/2007
Mom's entry 4/13/07 Part IIShe took the Zofran. And she's nibbling on the pancakes I made her an hour ago. So, things are looking up. Matt also reminded me that Brynn didn't have enough for dinner last night. Apparently, Paige and Brynn finished off a whole bag of soy chips while Tami was here yesterday and then weren't hungry for dinner. The things they get away with the babysitter. :)4/13/2007
Mom's entry 4/13/007Brynn woke up Wednesday morning with her belly hurting. She said it was too late for Zofran. She ended up vomiting one day and was a little slow getting up and around. It was a worrying day for me. It's impossible to put everything out of your mind. You question everything. So, I saw Dianne Wednesday evening and we talked and that always helps with my worrying. Now, the same thing is happening today. I can tell right away when Brynn wakes up if she's feeling good. She started out on the couch and had that pasty look. She always says nothing's wrong and gets so mad at me when I ask her what's wrong. But, I know. It's so frustrating. So, at the moment, she's got her "spitty bin" and I guess trying to get it out. She said she doesn't want Zofran. She said it's better to just get it out. I've taken off my yellow Livestrong bracelet. Brynn has been asking more and more why everyone wears them. Me, Dad, Mom Mom, Nannie, Pappy. So, I asked her if she thought it was time to take them off. I was thinking that instead of something that stood for inspiration and hope for all of us, it stood as a huge reminder of what our lives have been the past almost two years. Brynn said she wanted me to take it off. I always thought I would wait until October to take it off, but it's off and it feels really good. Brynn will most likely ask the rest of you to take yours off if you haven't after reading this. Almost all of Brynn's doses were increased at the last clinic visit. Bactrim went up, Methotrexate went up, and 6MP went up. Is that why her belly is having such a tough time? Help, I hate this. Looking back, I wonder how many times I've written that. As much as I try to stay positive, there's still so much anger and resentment at why us? Why anyone I guess? Pop is doing well with radiation and his oral chemo. He called me last night with some questions. I pray for his strength and healing. 4/13/2007
Mom's entry 4/9/07Everyone's doing well. I just tucked Brynn in bed and came into my bedroom when Brynn called me back. She had her arms out and a big smile on her face. She gave me the biggest hug and told me to keep it in my heart all night. I can't even say how much I was touched by what she said. I hold every ounce I have with her and with Paige in my heart always because her dear sweet life is so precious. These kids that have faced so much in their short little lives are so smart and so wise. Dianne keeps telling me that in her own way, Brynn knows. She knows that she's fighting for her life and trying to keep everything in as much control as possible. This brings tears to my eyes because it's so unfair that she has faced this. But, in so many ways, she's the lucky one to realize at such a young age to live life to the fullest and to seize the moment. Hello Frannie! Jordyn, your sweet little Easter picture - you look like an angel. 4/9/2007
Mom's entry 4/7/07One day before Easter and the girls are almost uncontained in their excitement. We colored two dozen Easter eggs again, after a dozen and a half last weekend. I don't even know what Paige will do when she sees a basket full of candy. Everyone is good. Brynn has been great. We have our application in for Camp Sunshine, hoping to attend July 11-15. It snowed on Thursday and this unusually cold weather doesn't seem like Easter or Spring at all. I think the girls are feeling stuck inside. They played in the garage for a long time yesterday. Easter love and blessings to all of you.4/7/2007
Mom's entry 4/4/07Everyone is doing fine. Brynn's steroid week and week coming off has been great for her. NO major episodes at all. I'm so proud of her. We all went to Dianne's last night, my "worry doctor". The whole family. It started out Brynn wanting to go with me, then if Brynn went, she needed Paige to go with her and Paige wanted to go with Brynn, then we thought Dad should be there too. It was really great. Brynn responded really well to her and actually kept saying how much she liked Dianne and had a few hugs for her during the hour we were there. She answered Dianne's questions and Paige was chatty as can be. It felt great for all of us to be there. I actually think all families going through this should have to see someone to see how the dynamic of the family is and the affect of this very long term situation. We stopped for ice cream on the way home, so it was a good night out for the girls and for Matt and I. All is well. We're praying for Pop Pop as he starts his treatment this week. Stacey, I would LOVE to see you. Hopefully you'll move to the East Coast, preferably in the Lancaster/King of Prussia area. :) 4/5/2007
Mom's entry 4/1/07Brynn did so great this weekend. One major crying episode each night before bed, but nothing major during the day all weekend. We'll see how the week or so coming off goes. We're supposed to see Dr. Danielle this week, but Dr. Julie thinks we should wait to see her until the week before next treatment at the end of the month so she gets a true look at the eczema. If we see her this week, there won't be anything to see because the steroids make it go away. I think it's a great idea. I'll reschedule. We colored easter eggs today and had so much fun. Paige and I did decoupage eggs and she did such a great job. She was so careful painting and putting the little strips of paper on. Brynn was on the couch alot today covered up in our red blanket. I don't think I'll ever forget her doing that or how she looks. My heart cries for her. The easter eggs perked her up. New pictures soon! Thanks Uncle Doug. Happy Birthday this week Olivia!4/1/2007
Mom's entry 3/29/07The lumbar puncture is over and we're home. Everything is clear, went perfect Dr. Leahy said. Brynn did great, woke up in good spirits and didn't have any trouble with any of it. She was only a little teary before we went in the procedure room and she said she was frightened. I told her it was OK to feel frightened, but that she was safe. We're all exhausted, at least Matt and I are. We were stuck in traffic the whole way down this morning and also stuck in traffic the whole way home, at least two hours. And just the stress and emotion of the whole day, we're spent. It was great to see Dr. Leahy and she said the same of us. They're all so wonderful to us down there. Only two more to go, hard to believe. There was a girl there getting her very last lumbar puncture today. Her family was with her. I kept wondering what it was like to be them. And probably some family two lumbar punctures from now will wonder what it feels like to be us. I look forward to that day and feel like I want our whole extended family there to cheer Brynn on. :) 3/29/2007
Mom's entry 3/28/07Clinic went well today. Brynn's counts are great. ANC 2190, Hgb 11.8, Hct 300,000. Even with a cold, her ANC held in there. She grew a good bit this month too, so her mercaptopurine and methotrexate and bactrim were all increased. Brynn did great as usual. She left her port accessed today so it won't have to be accessed again tomorrow at CHOP for the LP. While we were there, I met Aunt Melanie's friend, Diane. Her son, Ethan, has a form of sarcoma. It was really good to talk to her and share things that no one but us who is living this life of cancer knows. She seemed so happy to have someone that feels so much of what she feels and likewise for me. I pray for Ethan and their family. Last night before bed, we were talking about what happens when we go to CHOP. Brynn asked if they put her on a stretcher. I told her that they do. Paige, Daddy and I wait right outside the procedure room and we wait. As soon as Dr. Leahy walks out, we know that Brynn is not far behind. A few minutes later, they wheel her out with the OR nurse and usually 2 anesthesiologists. All we see is Brynn on her side, covered with Baba, and this nest of hair. Brynn laughed at this because she didn't know they cover her up with her Baba. It might the whole thing seem a little lighter for her, I think. Today, I feel a little bit like we're actually going to make it through this. I think I usually don't allow myself to feel that because you're always so much in the moment of it. Plus, the more I think about the end of treatment I feel like I'll somehow jinx myself or everything we've been through the last year and a half. Saying only 2 more lumbar punctures sounds wonderful, but the many many months of steroids yet seems endless. Brynn was outside last night after dinner running around, playing on the swingset, riding her scooter. I kept thinking that the energy will be way down in a few days. It's such a tease to see her the week before treatment because I feel like I see my true Brynn full of energy, happy, and carefree. Then, the weight of steroids is here AGAIN. AGAIN and AGAIN. I hate this roller coaster. I wonder if everyone says, we know, give it a rest. Diane told me today that it's so hard for her because no one else really knows how this feels and it's pointless to try to explain it. I told her we feel the same isolation, but that's just the way this cancer club is I guess. We both agreed that we would like our memberships revoked immediately. Our sweet girl continues to be a driving force in our lives and is doing so great. She's amazing, as is our sweet Paige. Paige, thank you for your sweet spirit and kind gentle way. You exude happiness that our whole family feels from you. God put you here to make all of us smile through this. Thank you all for your continued prayers. 3/28/2007
Mom's entry 3/21/07It was a rough night here. Paige was up first coughing and crying, but she eventually went back to sleep. Minutes later, Brynn was restless and felt warm. She had a temp of 99.9. We went downstairs to watch TV and to get some water. The temp never went any higher, thank goodness. I thought for sure it was a potential trip to the ER. She ended up vomiting, probably from all the mucous. She and I maybe got about an hour of sleep after we came downstairs. They both seem really good this morning. Colds are just miserable. I seem to be the only one escaping it. Matt's feeling a bit of a sore throat and congestion. I think I'm the biggest advertisement for airborne. It works. I'm even the one closest to them and I still haven't gotten sick. Today's plan is lots of fluid and maybe some fresh air if we can get out. 3/21/2007
Mom's entry 3/20/07Matt and I had a great time at the Christopher Bradley Foundation St. Patrick's Day event Saturday night. The turnout was a little low due to the weather, but there were still alot of people. It was so good to see everyone. We feel like we're part of this big extended family of theirs. The girls stayed with Mom Mom and had a great time. My heart just aches for our friend Chris Hartz who lost her daughter it will be 2 years ago in April to Leukemia. I hugged her for a long time while she cried. And as sad as she was talking about her daughter, she was equally happy that Brynn is doing so well. I am continually amazed at this group of people that have become imbedded in our lives by this connection we all share. I think of you all and pull from your strength. Paige ended up being up most of that night then when we got home with cold symptoms. She was miserable. And Brynn started with it yesterday. They're both fine, just the typical runny noses and coughs. When Paige got her cold, I actually found myself thinking it was good. I never thought I would say that. But, it's been so long since they both had a cold that it's good to have them for their immune systems. I'm glad actually Brynn has it now and can get over it before clinic and lumbar puncture next week. We pray for Matt's Dad as he battles the next hurdle he faces of chemo and radiation. Uncle Doug, we're sorry we missed your surprise 40th birthday party. We were there in spirit. Have a good week everyone. We're looking forward to the nice weather this week. Happy first day of Spring! Yeah!3/20/2007
Mom's entry 3/16/07Happy 40th today Uncle Doug!! We're thinking of you and sending you lots of hugs on your birthday. Happy Anniversary Nannie and Pappie. Brynn vomited this morning. She's so good. She just waits until it comes, doesn't complain at all. Once she vomits she's fine. After she threw up, she said, "actually, I feel just like myself now." This past week has been so nice outside and Brynn and Paige have walked the whole way around our development four days in a row. The exercise has been great and Brynn's belly is down considerably. She's been really happy and proud of all of her new big girl accomplishments. Hi Frannie and Sue! We miss you guys and think of all of our special friends and angels from CHOP. What an amazing group of people you all are with strength and spirit and life for our kids. We're staying in today while this storm comes through. Matt and I are excited for the Christopher Bradley event tomorrow night. The girls will spend a fun night with Mom Mom. Have a good weekend everyone.3/16/2007
Mom's entry 3/12/07Brynn has been running around like crazy! The sluggishness of steroids is gone. She has such a competitive edge to her, she's so funny. She wants to win at everything - how cliche for what she has going on in her life. Even when we play Dora Candyland, she arranges the cards so that the noncolor cards like the ice cream cone, gum drop, etc. are at the very bottom of the pile. Or she plants the ice cream cone card at the very top so she gets it first and ends up winning. I'm on to her now and know that Mom shuffles the cards. :) I had a really really tired day yesterday. Usually I'm tired all the time and can function, but yesterday I couldn't function. Matt was great and picked up the pieces of my half all day. I so appreciated having him see that I was out of commission. Brynn was nauseous this morning. I think those steroids take a real toll on her belly and then coming off is just as hard. She took Zofran, had some breakfast, 2 big glasses of milk and was up and bouncing around before I left for work. They were excited to see Tami. No appointments this week for Brynn. The eczema is raging again. Paige is sleeping through the night after a few nights of rough crying! Worth it in the long run. Why didn't I do this long ago? 3/12/2007
Mom's entry 3/6/07The girls and I camped out in the family room last night. I figured anything to get a good night's sleep and for the most part, we did. Whew, I feel better today. I joked with Matt yesterday that when we get through all of this, the medicine and steroid part of it, could he send me to canyon ranch resort & spa for a few days. He said yes. First me, then him, then us together. :) Brynn's dermatitis has disappeared for awhile now that steroids are on board. In the next few days, it will be raging. Paige has actually started with it. We think it is possibly our water - chlorine. The rash is only where their bodies are submerged in the water. We bought a filter for the tub. We'll see. The Christopher Bradley Foundation's St. Patrick's Day event is this month if there is anyone out there who wants to attend. Matt and I will be there for sure. We're in a much different place than we were last year. What a good thing!3/6/2007
Mom's entry 3/5/07Another month down of steroids. What is wrong with me that I feel drained so much every month during them and then for the next week or so following. It's just pathetic for Brynn and this weekend had so many moments of difficulty for me and for her. NOt so much the anger and yelling that we've seen, but just I think that as she's getting older, she understands that she's the one going through this and she's the one taking the medicine that makes her feel like crap. We were coming inside from taking a walk on Saturday and she just had such a difficult time and it wasn't for a lack of trying. I got her out, we walked up to the playground, we came back and she just wanted to go in. I went in with her while Matt and Paige stayed outside. Brynn was taking her shoes off on the steps when she looked at me and said, "Mommy, it's just not fair. It's not fair that I take medicine everyday and Paige doesn't." I felt so angry and of course validated what she was feeling. I told her it's so not fair, but it's not Paige's fault that she doesn't take medicine and it's not Brynn's fault that she is taking medicine. She seemed to be good with that. Then, last night as we finished dinner and I was cleaning up the kitchen, we put some music on as we often do and usually both girls are dancing around the kitchen giggling, etc. Last night, sweet Brynn was just parked on the couch wrapped in a blanket which is her usual place while she's taking the steroids. The only missing piece was that I wasn't sitting with her cuddling her. I absolutely feel like I am her safety net through those rough days. But, it takes it's toll on me. I'm so sleep deprived and tired today. Caffeine is my best friend. Brynn was up a couple times last night to go to the bathroom, Paige was up like usual, and this is after nights of this in a row. Matt and I were a little irritable with each other yesterday and that is totally from the situation and lack of sleep because that rarely happens. I guess what is so hard is that when Brynn takes the steroids, I actually see her suffering. She looks at me and I know I've written about this before, but the look she has in her eyes screams to me as her Mom to help her. And to know that I can't stop the medicine and I can't stop the way she feels, kills me. I can hold her and talk to her and try to meet all of her needs, but so much of this is out of our control. I'm tired. I'm so so tired. Not just physically, from every aspect. I know we're all tired as Moms, so I'm not crying myself a river, but the weight I feel is overwhelming me. I'm still doing the doggy paddle to stay above water for my family. I worry all the time about this being the proper venue for venting and for expressing myself. Dianne encourages me to write and I just don't have time to keep a separate journal. So, I'm really laying it out there and hope it's not too much for those of you checking on Brynn. This is all about Brynn and it always will be. I would go through this 1000 times for her and it would all be worth it to reach my goal - a happy and healthy life for my girl. :) 3/5/2007
Mom's entry 3/2/07Day 3 of steroids. So far so good. Everybody slept pretty well last night. Monday I was so very sad. I felt better after I talked to Dianne. I can't even say how much she has been helping me. I hope there is something I can do to have psychosocial support for the families going through cancer treatment at CHOP's king of prussia satellite office. There is this huge middle period between the time of diagnosis until the end of treatment that is filled with the ups and downs of steroids, the worries of what the future holds, the medication regimen everyday, the changes in the dynamic of the family during this entire treatment that, I feel, goes unaddressed. There is no way to go through this without feeling alone, sad, angry, and sometimes even crazy. I've heard from other Moms and I know I'm not alone. Yesterday, I was completely shocked and surprised when my boss pulled my team together at work for a meeting where our director was coming to speak. I thought that something major was happening with a reorganization with my team when it turned out that our German subsidiary had read my article in the Merck Daily and was touched by Brynn's story so much that they sent a beautiful card and stuffed animals for both Brynn and Paige. Linda presented this to me at this meeting. I was so surprised and touched by this very kind gesture. We continue to plug along here and I'm continually amazed at Brynn's drive and strength. She knows so much more everyday and continues to take care of me as well. I love you Brynn. I love your life.3/2/2007
Mom's entry 2/28/07Back from the clinic. Numbers are good, ANC 1595, Hgb 11.7, Hct 355,000. We were in and out. Brynn did great with her port as usual and vincristine was given. We came home, did the first dose of steroid and went back outside to enjoy this milder weather. Brynn rode her new Dora scooter up to the playground and Paige pushed her trike. It was good to see them running off some energy. Brynn's weight is up a bit due to the winter and being inside. It's hard to get them moving inside, but that won't be an issue as it gets warmer. I hope it's an easy steroid month. Easier I should say. I have an appointment with the "worry doctor" tonight. It helps.2/28/2007
Mom's entry 2/28/07Off to the clinic this morning. One month closer. 2/28/2007
Dad's entryAlthough only a few days, at times it feels like I've been gone much longer. Thankfully, all seems to be headed in the right direction with my Dad, which makes leaving him a little easier. And as important as it was for me to be with my Dad, I cannot wait to get back to see my girls. Halley, and my two little angels....I am so proud of all of you!! I will see you tomorrow!!!2/23/2007
Mom's entry 2/22/07The Henry girls are all hanging in there with Matt gone. We had fun yesterday, went outside and played in the snow since it was a mild day. We did some yoga close to dinner and the two options on my CD are either flexibility or stress relief. Brynn said we needed stress relief. :) Cracked me up. Mom Mom slept over last night so I could get up early and get out to work. I think it was a rough wake up from what it sounded on the phone. Lots of crying and saying I didn't say goodbye. My kids are so extremely routine that anything that's different than what we usually do throws them off. I wonder who they take after more? They get the best of it from both Matt and I, I think. Pop Pop is doing really well and reports that he may come home from the hospital this weekend. Amazing. Hello to the Wilkinsons, thank you for your note and prayers. I hope you can meet Brynn and Paige sometime. Although, the last I saw you, Brynn was just starting to walk and I was pregnant with Paige. The years go by so quickly. 2/22/2007
Mom's entry 2/19/07Everyone is doing well here. Brynn has been great. The dermatitis is still there, but we're managing and it doesn't bother her much, other than some slight itching. Dr. Danielle said it will probably be an issue until she finishes treatment. Her monthly steroids will allow the rash to be subdued, but then when they wear off, it will come back with a vengeance. And it did. It's almost like how can we add one more thing to the daily regimen of medicine, but we have and it's fine. The girls and I are on our own this week. Matt's in Wisconsin with his Dad. We pray that everything goes well on Tuesday. I'm glad they have this time together. We miss him terribly, but five days will fly by. Brynn said just like her 5 steroid days and then it's done. Same thing with Daddy coming home. :) We have a giant share bear sitting in Dad's dinner chair so it's not so empty. We're back to the clinic on 2/28. Have a good week everyone!2/19/2007
Mom's entry 2/12/2007We had a really nice weekend celebrating Brynn's birthday. My parents came to visit and Julie and Ric spent the entire day with us and it was just alot of fun. The girls really had a fun time and Brynn was thrilled with her Dora scooter. Brynn had a few rough spots where she was resisting the whole birthday thing, but in the end, she had a good time I think. She must be feeling like so much of her life is out of control and these kids are searching for any ounce of control they can find. But, they're also looking for boundaries and that's not always easy as a parent to give a child who's taking chemo everyday. I struggle with this alot, but in the end it will help her deal with situations that are difficult or unpleasant for her. Frannie, thank you for your kind birthday wishes to Brynn. I'll never forget your sweet smiling face when Brynn was first diagnosed. You always found a way to make me smile in the midst of my fear. I think about you so much and your sweet angel Anthony. God Bless you all. 2/12/2007
Mom's entry 2/8/07Everything went well with the dermatologist. Brynn and Paige actually have fun going because Dr. Danielle is sooo nice to them and there's lollipops. :) Brynn definitely has eczema. The fact that the rash went away during her steroids is a telltale sign. It will probably continue until she's done with her leukemia treatment because of the on and off abruptness of the steroids every month. And will probably actually flare up worse each time after she comes off the steroids. So, it's a matter of managing it with the right lotions and washes, etc. It's completely OK and she's fine. She's not bothered by it in the least. We had a fun day yesterday and Brynn seems back to herself playing with Paige and happy. There was lots of giggling and playing in the afternoon leaving the house a mess, but I didn't care in the least. Can't wait for Brynn's birthday on Saturday! The Make-A-Wish Foundation is coming to talk to Brynn on 2/18. The volunteer that called our house was so nice. I look forward to their visit. A continued thank you goes out to all of our friends and family praying for Brynn. Hi Stacey! So good to hear from you. Call me anytime. I hope your family is well. 2/8/2007
Mom's entry 2/5/07A Really rough steroid month. Yesterday almost as tough. It just breaks my heart the look she gets in her eyes. Almost just screaming out that she has no control and she hates it as much as we do, if not more. I think her age now is part of it too because she's understanding more and more. She asked me yesterday why she cried so much the night before. It must just feel like an out of body experience kind of. I left for the food store yesterday and she just lost it. I haven't seen her do that in awhile. She was crying and screaming to not go. She was fine then moments after I left. I'm glad they're done, another month down. Brynn's birthday is Saturday! We're excited for having a party and celebrating her 5th! I can't believe it. Every year is a wonderful thing to celebrate! Dermatology appointment on Wednesday.2/5/2007
Mom's entry 2/4/07It's a really bad steroid month for Brynn. She had a terrible time last night saying she wanted carried and her legs were too tired to walk. But yet she wouldn't let Matt carry her. I physically can hardly carry her anymore at 52 pounds. I felt so bad and she said when will the tears stop coming? And she was screaming mad at all of us. Of course Paige was quiet as anything because I know it scares her when Brynn gets like that. I HATE THIS FOR HER!!!!!!!!!!!!!!!!! Matt and I were so emotionally spent after yesterday. We tried to go out sledding yesterday. I thought it would be a good distraction for Brynn. She cried and yelled and her snow pants didn't feel right. Getting out the door was a major challenge for her. She says how she feels sick on the steroid. Only 1 more dose, thank God. It's endless and feels awful for her.2/4/2007
Mom's entry 2/2/07It's February! Counting down in my head towards October. The lumbar puncture went great yesterday. Brynn did so well. It's amazing to me. She was really scared to go in the anesthesia room. As I was holding her, she was gripping with both hands the doorway on the opposite side not letting go. I had to pull her away with everything to carry her in. She was crying and it was the hardest thing. This part will never get easy for me knowing what they do, but it's helping her and that's what gets me through. She kept saying she didn't like that the room spins. And I explained that the room doesn't really spin, it's just the medicine that makes her feel like that. As they were giving her the propofol, she started laughing and that was it, she was asleep. I lay her on the table and out I go. Dr. Leahy was out in less than 10 minutes with a big smile saying everything went fine. Her CSF was clear, colorless and free of leukemia!!!!!!!!!!!!!!!! Only 3 more LP's to go, I think. One in the Spring, one in summer, and one right at the end, most likely. Brynn woke up well, had some snacks, and we were on the road by 11:30. I think that was the quickest we were in and out ever. I met a Mom from NC who brought her daughter to CHOP for treatment. She has neuroblastoma and at this point was not a bone marrow transplant candidate. I'm praying for them that she will eventually be able to have the transplant. Her name is Kathy and she's 5. She played with Brynn in the waiting area before they both had their procedures and woke up together in the day hospital. I'm going to make her a hat and mail to them. My own way of doing something, I guess. Brynn was so tired last night and had the chemotherapy look with dark rings under her eyes. I hate seeing it, but I know she's OK. Her little body is so strong. Her back was also hurting her, so she took a warm bath and layed in my bed watching a movie before she fell asleep. She's good this morning, just the steroid stuff starting. No snow this morning, I guess the forecast changed. I remember a year ago or so getting so upset seeing Brynn coming out of the procedure room after her lumbar puncture. Last night, I got upset thinking that it's become so common place that I don't get upset anymore. It's so unfair that a LP has become like I don't know what. Some simple, when it's so not simple. I don't know if that makes sense. What will our lives be like when there are no more LP's, no more chemo, no more steroids? I can't even imagine right now. 2/2/2007
Mom's entry 1/31/07Home from the clinic. Counts are great! ANC 1300, Hct 33,000 and Hgb 11.7. Brynn doesn't even flinch much anymore when they access her port, she does so good. They gave her Vincristine and she left her port accessed for tomorrow for down at CHOP - lumbar puncture. Anything to get us in and out faster. We also saw Dr. Gazdick this morning prior to Dr. Julie for her 5 year well check. It's funny to see a doctor at least every month if not more and still go and have a well check. It was more for insurance purposes than anything so they can continue to put our referrals through and she has a current well check on her chart. But, it was great to see Dr. Gazdick. The last time she saw Brynn was when she ordered the CBC for her prior to being diagnosed. She said how great she looks and complimented our family for how well we're all doing. She had such a look of understanding on her face for what the past year and a half has been like. She also didn't seem very surprised when I told her we moved. I wondered about that. Anyway, we're home, steroids are on board and we'll gear up for our trip to CHOP in the morning. The girls have put fancy dresses on and are having a pretend tea party while I take a quick breather. I'll make an entry tomorrow after the LP.1/31/2007
Mom's entry 1/29/07 - Part III also forgot to add something. Last Wednesday, all day, the girls and I talked about making an Angel Food cake. Finally, at the end of the day, I realized that we never made it. As we were cleaning up after dinner, I said to Brynn,"Oh, we forgot to make the angel food cake!" Brynn just looked at me with the sweetest expression and said, "Mommy, tomorrow is a new day." That statement hit me like a ton of bricks. I guess it would be easy to just let it go in one ear and out the other, but I took it as great insight that she knows that there will always be a new day ahead. I smiled in my heart and gave her a big hug. I wrote down what she said with the date and it's hanging on my refrigerator. 1/29/2007
Mom's entry 1/29/07Brynn's rash is getting better, slowly by surely. I've totally let go of the stress I was feeling from it now that I know it's definitely dermatitis and nothing else - nothing that will harm her in any way. We're being diligent, following all the guidelines given to us by the dermatologist with applying creams, short baths, moisturizing, and All Free & Clear detergent. I really think it's making a difference. We had a good weekend. I was proud to tell Brynn's story and our family's experience with her leukemia at the Main Line Relay for Life kick-off on Saturday. I was so proud to say that she is a cancer survivor and the strongest kid I have ever met. I, of course, was teary through most of what I said. But, the most important thing that I tried to convey was the positives to come out of our experience and there are many. I met Kay, another Mom who's daughter had cancer and she gave me the biggest hug and said that no one will ever know what this journey is like other than another Mom. She said, "No one has as much on them as you." And it felt so good to hear her say that. I felt an immediate connection with her and she offered he support and friendship. The girls had a blast. They were so cute, packed suitcases to go and ran around all through the church. My talk was geared towards Brynn hearing it, but she never did. But, in my heart, I was talking to her. So, last week, I learned that it is time to let go of my fear. The fear of what's around the next corner, the fear of what to look out for. It's time to convey to my kids that the future is not scary, the future is positive and bright. I do not have to wait until we cross that finish line in October to live. I've started the healing process and the moving on process now. Little things were huge messages to me that I've been sending messages that I'm scared. How can I not be scared after this trauma, this ongoing trauma? But, the unspoken words we send to our kids are heard loud and clear. Now I know what I need to do to heal myself and my family. It's a work in process. I am also doing some things to channel my anxiety differently. Brynn has chemo on Wed and lumbar puncture on Thursday. I'll be glad to get this week over. Love to you all.1/29/2007
Mom's entry 1/23/07Back from the Dermatologist. Still a diagnosis of dermatitis and no biopsy! Dr. Danielle feels it's getting a little better and was encouraged that the spot went away under arm with the Locoid cream (came back after I stopped using it). So, we have a new cream regimen and a plan for bath time, washing clothes, etc. So many reasons this could have happened, but it clearly looks like Brynn is allergic to something from the outside, not the inside. The areas that she has the rash are clearly where her clothes rub her the most or fit the tightest. We stopped and got some new underwear and the recommended All Free & Clear. I'm in the process of washing everything again. I'm exhausted. It is so much work packing up 2 in the morning, rushing out the door, not forgetting anything, getting there, in and out of the car, askin the right questions in the office, stopping a few places on the way home. :) But, I am so reassured that it's nothing putting Brynn in danger or nothing serious. We're back in 2 weeks. I'm speaking at the Main Line's Relay for Life kick off this Saturday. I think my focus is going to be enjoy your family for everyday that you have, let go of issues in the past, and live life to the fullest! Just look at my sweet brave girl what she goes through every day. She's absolutely AMAZING to me along with every other kid going through their own battle. My heart goes out to you all. 1/23/2007
Mom's entry 1/21/07We had a good weekend. Brynn woke up yesterday and scared Matt and I a little bit. She said she was hungry and wanted to go downstairs. When we got downstairs, she just laid on the floor and looked really pale. She ate maybe half of a granola bar and her milk, then she said she was really cold. We piled blankets on top and she kept saying she was cold. By that point, I called the clinic. They told me if I needed to, take her to a local ER to have her hgb checked and to call them back. No sooner did I get off the phone, she said her belly felt sick. Then, it hit Matt and I what was going on. She didn't have much for dinner and had her bigger dose of 6MP last night, which must have been too much for her belly. She vomited and within minutes was feeling better and up and playing. She took a Zofran and was fine the rest of the day. A CHOP oncology nurse called us back a few hours later to check on Brynn, which was nice. I wonder how many nervous parents call the oncology fellow during the weekend. That's what I felt like. The nurse told me not to apologize that any call warranted by a parent is important. It helped to hear that. Despite that, we all had a nice weekend. Matt and I went out to dinner and Andrea came and played with the girls and got them ready for bed. We came home and when we walked in the house, all we heard was giggling. Andrea was pretending that Paige was a cheese burrito while she was getting her dressed. And Brynn was playing in the bathtub. It was a nice break for all of us I think. Sunday was nice too. I sat down and did some knitting, I cleaned the girls rooms - they were disasters, and did the usual laundry and food shopping. whew, it goes so fast. I think the rash might be getting a little better. Gale, thanks for the tip on the vinegar. I never heard that, but will try. Do you use the vinegar and a free & clear detergent. I stopped using that Tide weeks ago. Since all of this, I've heard so many people say they've had rashes as a result of using Tide. I still like the smell of it. :) We're back at the dermatologist on Tuesday. I hope to get a good night sleep. The girls and I had a camp out in the family room last night. My back didn't fare so well. Off to work tomorrow. 1/21/2007
Mom's entry 1/18/07I don't think the rash is looking any better. She's not itching and it certainly doesn't look any worse. But, WHEN WILL IT GET BETTER AND GO AWAY????? The dermatology office called this morning to see how she's doing. We're to continue the Locoid cream for another few days. Back to see them on Tuesday. I feel like we've been in doctor's office at least once or twice a week for the past 2 months. I guess we're probably heading towards a biopsy on Tuesday. I hope not for Brynn's sake. I was honored last week to have my Touched by an Agency story published in Merck's Daily. It's difficult looking back at the picture from a year ago, but good too to see how far she's come. Brynn saw it yesterday and said, "why do I have that silly cap on?" And Paige said, "because you didn't have your hair, B-dah" (what she calls Brynn). I don't know if she was saying this because she really doesn't remember or because she was uncomfortable seeing it. Because I really do think she remembers not having her hair. It's just something she never talks about. Other than to say vehemently that she will not wear a barette no matter how long her hair gets or when it gets in her eyes. I say whatever she wants to do is great. Anyway, since the article, I have to say thank you to all of the wonderful Merck people who have reached out to me and our family. It means so much.1/18/2007
Mom's entry 1/16/07We saw the dermatologist at 10:30 today. Brynn's been diagnosed with dermatitis, irritant unknown. It could have been Tide laundry detergent. Apparently well known as an irritant. If I had known that when I saw the sale of it. Anyway, we have some lotion to treat the belly and under her arm area only. We're back in a week for follow-up. I'm somewhat relieved that we have a plan and that a specialist saw it. And that it's not yeast. I just want it to go away. Brynn had alot of itching last night that we treated with Benadryl, which the dermatologist (Dr. Danielle) recommended. I wasn't to put any of the lotrimin or hydrocortisone cream on last night in case it was further irritating it. UGH. If I could only express my frustrations as a Mom. I guess this website isn't the place to do that. Please pray that this new lotion works and we can move on in the next chapter of this journey. I can't say how many of these days that I've felt absolutely crazy. I often wonder what will be left when reach October? I'm sure a person that will look back and be proud of what we've all accomplished and joy and elation that my sweet daughter is well and cancer free. 1/16/2007
Mom's entry 1/15/07We're stil dealing with the rash and I CAN'T TAKE IT ANYMORE. It's been over 3 weeks now. We have an appointment with a dermatologist tomorrow. I can't even talk about it with anyone I'm so frustrated. So, please forgive me for those of you who feel I'm being distant. I just completely shut down when I'm worried and stressed. Our new babysitter, Tami, started today. I was supposed to have lunch with a friend, but cancelled because I've been so worried today. I thought maybe we could get in to the dermatologist today, but didn't happen. I guess we're lucky to be seen in one day. So, I ended up running some errands and then came home and did some cleaning upstairs while the girls played with Tami downstairs. Cleaning always takes my mind off of things. I can't wait until tomorrow at 10:30. 1/15/2007
Mom's entry 1/11/07The rash is back. I guess it's been long enough off the steroids that it's back on her belly, buttocks, and legs. She's not bothered by it at all, so I'm not worried. I'll call and talk to the oncologist tomorrow. It really must be some kind of dermatitis or reaction to one of the drugs. It's just strange that it's not all over if it's a drug reaction, just isolated to certain areas. I'm in the process of washing everything with free & clear. It's hard to remember the timing of things, but I may have used a laundry detergent that was different around when it started. Otherwise, she's been great. We had the sweetest conversation in the car yesterday. We were taking about her Make a Wish through the Make a Wish foundation and Brynn asked why she gets one. I told her it's because of how brave she's been through her leukemia treatment. She said she did not want a wish unless Paige gets a wish. She said it with such conviction and shows how much they depend on each other. Anyway, her current wish at the moment is going to Australia to meet the Wiggles in person. She, of course, doesn't know what this involves. The wish used to be Walt Disney World. She asked yesterday if she could meet the backyardigans at Disney World. I said I didn't think so. :)1/11/2007
Mom's entry 1/8/07We had a good weekend. Brynn did great on this round of steroids. Not to many mood swings, yelling, or crying. She is so affectionate and lovey with me while she's on them. I'm trying to take it in as much as possible. Soon, I won't be able to hold her anymore. She just puts up her arms and looks at me and says, "hold your winnie girl." The rash still looks good, going away. We'll see what happens this week. The colds are over! Paige still isn't sleeping, but there's nothing new with that. We were outside all afternoon on SAturday and it felt so good. Brynn and I took a walk yesterday and talked. She pushed her little baby stroller and I carried her other baby. She actually got me up to go for a walk instead of the other way around. 1/8/2007
Mom's entry 1/4/07Well, my anxieties are starting to ease a little bit. Brynn is fighting the cold and the clinic visit went well yesterday. Her counts were great. ANC 2080, Hgb 11, Hct 32,000. After everything that has happened over the past 2 or 3 weeks, they're not thinking that Brynn never had chicken pox. She still has a rash on her belly and the course has been completely atypical of chicken pox. But, of course, better to treat her for it in case it was. So, now they're calling it the mysterious rash and it could be viral because a portion of her CBC definitely indicated something viral going on (the cold too) or it could be related to the methotrexate and sweating or it could be some kind of dermatitis. Because her counts were good, we started steroids yesterday. So, the dexamethasone could help clear up the rash if it is some kind of dermatitis. We'll see. If it doesn't go away in a few weeks, we'll probably be on our way to a dermatologist. Brynn isn't bothered by it at all, which is great. The lumbar puncture was pushed back until next month because of the cold, not safe to go under general anesthesia with her symptoms. So, that's where we are. I think there's always reassurance after she's checked and we know her counts, so I am feeling better. It's hard to describe how one little worry starts and then it snow balls and the anxiety is just overwhelming. Karen, I'm so relieved that Abigaile is fine, thank you for sharing that you go to the same places that I do. I know we all do, but it feels like you're so alone in all of this. I miss you all. I got a little more sleep last night, so I'm not feeling like a zombie today. I'm sure the steroids will kick in today. 1/4/2007
Mom's entry 1/2/07My first entry for 2007. Brynn's still fighting her cold, although I don't think her breathing was as loud last night and she didn't seem quite as restless. She woke up yesterday morning at 4:30 and said she didn't feel well and asked for Zofran. She was a little warm, temp was 99.7. I didn't need to check it again though because she felt cool and was fine the rest of the day. I'm guessing all the mucus that drained all night upset her stomach. She drank and did great yesterday. It was hard to leave for work, but Brynn was telling me to go that she was OK. The worry just consumes me, even though I know she's doing fine. I can't wait to go to the clinic tomorrow to see what her ANC is and to have Dr. Julie look at the rash. Matt made me laugh over the weekend on his birthday. He said he feels like he's 50, so turning 40 wasn't so bad. :) We both feel like we're aging prematurely. I love hearing from our friends: Karen & Abbe, The Aledwans, Balinda and Jordyn - Love to you all 1/2/2007
Mom's entry 12/31/06Where to start. Brynn got Paige's cold I guess yesterday or the day before. I guess it started Friday night. She said her throat hurt when she swallowed. That was the night that Paige was up miserable with her stuffy nose. I'm guessing maybe 4 hours of sleep for me that night. Brynn seemed really good during the day yesterday, but her cheeks were really pink and her lips were chapped. That's always a sign that she's getting a cold. So, she went to sleep last night and Matt and I couldn't sleep at all because she sounded terrible. She was snoring and having noisy upper airway breathing and was very restles. She would sit up and cough, roll over, and kept doing that for a few hours. At around 2:00 (no sleep for me yet), she woke up and was coughing (croup sounding) and wheezy and said she couldn't breathe. Matt and I ran her downstairs and we took her outside. She calmed down a little bit, but said she was still having trouble breathing. We spent the next few hours in the emergency room at CHOP. It turns out that she does not have pneumonia as a result of the chicken pox, she has croup most likely, as does Paige. Her lungs were completely clear and she felt better. We were out of there in a couple hours. Mom Mom drove down with us because I didn't want to go myself not knowing what was going on with her breathing. I was so tired driving home, that I pulled over and let Julie take over. We got home and got maybe 2 hours of sleep. I'm praying for some sleep tonight because I'm not sure what I'm running on at this point. With everything going on, I think Matt had a nice 40th yesterday. The girls were so excited to give him his presents and we made cupcakes (more for them of course than for Matt). It's New Year's Eve, I couldn't be more excited for 2007, specifically October 2007. I will definitely not be awake (hopefully) to ring in the New Year. We wish everyone a healthy and happy 2007! 12/31/2006
Mom's entry 12/29/06Brynn and I spent over 3 hours at the clinic today. It was soooo busy in there and we were in to have her rash rechecked. She finished the 7 days of the acyclovir today and not knowing if the rash was getting any better, everyone thought it best that she was seen. Dr. Julie felt that it was actually drying up more and that was giving it the different appearance that I was seeing. I pray that that's right and it is getting better. I just don't know. I don't have any experience with chicken pox. I forget who said somewhere on this network that I read that when things are good, they're great, but when things are bad, the worries just consumes you and everything around you. I can't stand it. But, the good news is that Brynn was not admitted today. She's due back in on Wednesday for her normal treatment and Dr. Julie can get another look at it then. Why is there always that what if? What if we're missing something? Anyway, Paige has a cold and she's battling through that like a trooper. Matt turns 40 tomorrow and we're not doing anything other than celebrating the four of us. Not what I pictured for a #40 bash, but that's perfectly OK. We got to see Karen and Abigaile at the clinic today briefly. That felt good to see their smiles. I wish we could have hugged and talked longer. Abigaile looks great, I pray she is doing well. We're all keeping the faith. Happy New Year all!12/29/2006
Mom's entry 12/26/06I hope everyone had a nice Christmas. We did, despite worrying about Brynn. I spoke too soon about her belly. She woke up yesterday, with Paige, at 6:30 and seemed fine. They were so excited and ran down and had eyes so big at the presents under the tree. Much different than last year because it took Brynn 5 days to open gifts last year and I think it took her about 30 minutes this year. :) It was so cute. We had breakfast and about 30 minutes later she started to complain about her belly and we could tell it was coming. She vomited maybe another 30 minutes later. But, after that she seemed herself and was fine the rest of the day. But, it's amazing what those short 30 minutes can do to the rest of your day. Matt was really upset and I was comforting him for a change, that doesn't happen very often,. It's usually the other way around. But, she was fine and played all day with Paige and all their new toys. I left early this morning before everyone was awake. Of course, I took a quick look at the rash on her belly and I just don't think it looks any better yet. It doesn't look worse, but when will it start to look better? What if it isn't chicken pox? What could it be? It's been almost 2 weeks now. She's not scratching it or complaining about it at all. I wonder if we'll end up at the clinic again this week. I'm waiting for the call from Matt to see how she's doing. Is it OK to say that I hate this? 12/26/2006
Mom's entry 12/24/06Brynn was diagnosed with chicken pox on Friday. She has had a small rash for about a week and woke up Friday morning saying that the rash hurt at her belly area and she was nauseous. We ended up spending the whole day at the clinic on Friday. The rash was suspicious enough to be called chicken pox, but her counts were good enough to avoid a hospital admission. So, we're home in isolation on oral acyclovir for seven days. She's not happy about it at all. Immunosuppressed kids can get anything easier than others even though she was immunized and the chicken pox present differently than the normal chicken pox because of those two reasons. So, we're praying to get through this and she doesn't get any worse. We're watching for fever, cough, trouble breathing. There are lots of complications for ALL kids with chicken pox. Brynn is doing great, though. She really hasn't missed a beat and has been acting like her normal self for the most part. Of course, Matt and I worried alot and it's difficult to be excited for Christmas now with this. But, the girls are excited, so of course we're feeding off their excitment. Paige was up three times last night because she said she missed me. I'm tired and totally sleep deprived. My coffee didn't even help this morning and I usually start looking forward to it the night before in bed. :) I still have all of our wrapping to do tonight, so it will be a late one. Please say a prayer for Brynn to continue to get through this. I think the vesicular lesions are looking a little better today. We hope you all have a wonderful holiday and enjoy the time you have with your family. Christmas is a magical time. We look forward to all the happiness that 2007 is going to bring. 12/24/2006
Mom's entry 12/20/06New pictures everyone! It's been 2 years since we've had their pictures taken and our friend Daphne Longo came and did such a great job. We thank her so much. When I look at these pictures, I just think thank God we're where we are this year. Last Christmas we were in such a different place going through delayed intensification and Brynn's hair about to come out, and just everything trying to deal with jobs, money, etc. The girls look so happy and close, it just warms my heart. Enjoy!12/20/2006
Mom's entry 12/18/06Brynn hasn't had any trouble with her belly in over a week. I hate to even say anything, but could it be the fact that she's back on her old Bactrim (different manufacturer), different manufacturer of her 6MP, we haven't had pasta for dinner (the tomato sauce being too acidic), making sure she's drinking enough. All kinds of thoughts run through your head. I never imagined that different manufacturers drugs could differ so much, but it could have been the problem. She never had so much trouble with her belly until we moved and had to start a different Bactrim. The girls are soooooooooo excited for Christmas. The countdown definitely started in our house this weekend. I think Paige is having trouble sleeping because of how excited she is. Matt and I are incredibly excited too! We hope everyone has a wonderful holiday and a healthy and happy New Year in 2007. Love, The Henrys12/18/2006
Mom's entry 12/11/06So far it hasn't been a bad steroid month at all. There were a few screaming and crying episodes, but Brynn's doing so great this time. We'll see how the rest of the week goes. We went to the clinic's Christmas party last Thursday and it was really nice. The steroids had just kicked in later in the day, so it was a little much for Brynn. She kept saying how loud it was and that there were too many people. We met a really nice family who's son has ALL and he's in his last year of treatment. I felt an immediate connection with them and saw her tear up talking about the same things I get emotional about. She said that she thinks it takes her son 3 weeks for the steroids to clear his system. Right before he's ready for the next round of treatment, he seems back to himself. It felt so good to hear someone say that. I feel like that so much of the time. Anyway, it was a good weekend, quiet and relaxing for the most part. Next month is lumbar puncture month. After that, only 3 more to go!!!!!!!! Matt and I both can't wait for it to be 2007! We'll actually be in the year that Brynn finishes treatment. Do we dare start counting down yet? No. Continue to be thankful for how well Brynn is doing. Yes! 12/11/2006
Mom's entry 12/7/06We started our day yesterday around 5:00 a.m. Brynn woke up complaining that her belly hurt and then the vomiting started. I gave her Zofran and she stopped a couple of hours later. When I saw her start to vomit I started to feel sick in my stomach. Probably nerves, but I felt terrible. Fourth time this month she's had trouble with belly pain and vomiting. Matt stayed around to help until we were off to the clinic. By that time, Brynn felt better and was acting like herself. The clinic visit went well. Brynn did the best I've ever seen her do with accessing her port. Paige was sitting on the table with her and when they were done, Paige said, "Brynn did such a good job!" To hear her little voice say that and the fact that she was saying how well Brynn did with accessing her port, touched my heart. I see a bond forming between them that is so special and is forming a relationship for a lifetime to come as best friends, confidants, and support for each other. Brynn's counts were grount. Her ANC was actually a little too high at 6000. Hgb 10.9, Platelets 278,000. They sent a panel which will also check to see if her liver is OK. Her one medication, 6MP, can cause liver toxicity which could be an explanation for her vomiting or it could just be the 6MP itself. I should hear today if any of her LFT's are increased above where they should be. Yesterday, her 6MP was increased a bit to adjust for her growth and to get the ANC back down to around 1000-2000. I know it's only day 2 of the steroids, but so far so good. Everyone slept fairly well and we've got a Christmas party at the clinic tonight where we heard rumors that Santa maybe making a visit. :) Of course,the girls are thrilled about that and the combination that there's going to be CAKE! Have a good day everyone!12/7/2006
Mom's entry 11/29/06I hope everyone had a nice Thanksgiving! Brynn woke up at 3:00 am and complained her belly hurt. She eventually vomited, I gave her Zofran, and she said she felt better. She's been eating OK, it just seems to come out of nowhere. She did the same thing this past Saturday morning. It lasted longer though and she vomited probably 3 or 4 times. I'm worried about liver toxicity or I just read about some kind of resistant condition related to the Bactrim that she takes every week called some kind of pseudo something colitis. She's had 3 vomiting episodes this month. It's probably nothing. My internal struggle continues as I worry about something and then try to turn it around to convince myself that it's nothing and normal part of the treatment. But, how am I to know what's normal and what's not. And what's normal for Brynn is probably different for another child with ALL. I've seen that St. Jude commercial a few times with Robin Williams and the little girl in the ballet outfit with ALL. She has the same look as Brynn. It touches my heart everytime because she looks so sweet and happy. Brynn's next round of treatment is next Wednesday. Hello to Miss Jill - we miss you all too. Please tell everyone at the Malvern School we said hello. Hi Karen & Abigaile and Belinda & Jordyn. Are you all going to the Christmas party next week? Hope to see you there.11/29/2006
Mom's entry 11/20/06Wow, it was a really tough steroid month in the Henry household. I think we've all finally recovered. It is an emotional roller coaster EVERY month and it's really starting to take its toll on me. I saw on TV yesterday that Boscov's is selling a special Winnie the Pooh bear with two attached friendship bracelets to benefit the Make-A-Wish Foundation. Make-A-Wish grants wishes to children who's childhood has been "taken away" due to a chronic illness, cancer, etc. When I heard that, it really hit home because in so many ways part of Brynn's childhood has been taken away from her. But, in so many other ways I've seen her grow and mature and be so smart about what's going on with her life and her treatment. This holiday week and on Thursday, I am so thankful for life, for my children, my husband, and a loving and supportive family that have been there for us every step of the way. I wish you all a joyous and happy holiday with your loved ones. I am so blessed. ****There's absolutely no reason to be rushed along with the rush. Robert Frost*** 11/20/2006
Mom's entry 11/12/06New pictures! Thanks Doug. I'll try to do better about posting more recent pictures. How about the hair? It's getting so long. So, it's day 5 of steroids and there have been some real up and downs this weekend. I kid and say that I should have a radar tracking device attached to me because if I'm out of site for more than a minute, Brynn calls out Mommy. I'm glad that I'm that reassurance for her and help her get through whatever she's feeling. When we were at the clinic last week, they had a board for the kids to write what they were thankful for during Thanksgiving. Brynn wrote "CAKE", which is such a great answer. And Paige said she was thankful for cupcakes. Brynn even drew a picture of a cake. It was so cute. Have a good week everyone!11/12/2006
Mom's entry 11/9/06Good clinic day yesterday. Brynn's counts are good. ANC 1900, Hgb 11.8, Platelets 280,000. She did great with accessing her port like she ususally does. She had a new nurse yesterday and Brynn cried when she deaccessed her port with the bandage coming off. Honestly, the tape coming off is almost the worst part for her. I know she's tired of all of this because the night before the clinic she cried and cried when it was time to take her medicine. What a long journey this is for her, every day taking medicine. Even Paige is right there in it with Brynn because Brynn wants Paige right with her everytime she takes her medicine. Anyway, the steroids started for 5 days. She did so well last month, so maybe it's getting easier for her in some respects. She knows now that she feels funny on them. It's going to be a gorgeous day today, so it's probably Kerr park day for us for sure! Who cares about doing the dishes and housework! :) Have a good day everyone!11/9/2006
Mom's entry 10/31The girls are so excited about trick or treating tonight. As of now, they're both going to be backyardigans. Brynn is Tyrone and Paige is Uniqua. Brynn was up early with me this morning and wanted to get dressed right away because it was Halloween. She just warms my heart constantly with her sweet little comments and just her way. She's so ahead beyond her years. She draws such happy pictures of our family which is a testament that despite what she's going through, she's a happy normal little kid. She got a bruise last week on her arm and I've never seen a bruise so dark on her arm. The worrying started to consume me that something was wrong. It was horrible looking and she couldn't remember bumping it. It seems to be getting better and when I checked in with the clinic yesterday, they repeated that her counts were good last month and as long as she's playing and has no other indication that something is bothering her, to just watch her. Am I the only parent that feels like this? That becomes consumed with thoughts that I don't want to be having. Brynn's next appointment is November 8. She's doing so well. Hope everyone has fun tonight!10/31/2006
Mom's entry 10/16/06I didn't get a chance to update the site after Brynn's lumbar puncture last week. Everything went well as it usually does. Matt said as I was holding her and they were injecting the propofol, she smiled as she was going to sleep. She comes out of the procedure room and looks like a little angel sleeping. They always have her covered up and snug in her baba. I love watching her sleep afterwards. She looks so peaceful. Her CSF was clear! Another month down. Since today is Monday, she's already through the 5 days of steroids. They went so well this month that I often wondered if it was a bad batch. She only had one really major crying episode. The hunger was an issue a little bit, but she didn't seem as sluggish this time. She took a nap on Friday, which she never does. Matt and I talked about how she looked on Thursday night after the Vincristine on Wednesday and intrathecal methotrexate on Thursday. Her face looked so pale and she had red rings under her eyes. She truly had that cancer/chemotherapy look. It broke my heart. But, she woke up after a good night sleep on Friday and was our Brynn. She's always our Brynn, but she didn't have the look the night before. We all do a little steroid is over dance on Sunday night. Even Paige gets excited and says something to the effect of "3 weeks off". The girls spent a really fun day on Saturday with Mom Mom and Daddy while I was away. They planted winter pansies and did some painting and enjoyed the pretty fall day outside. Thank you all for your continued prayers and thoughts. The Henrys10/16/2006
Mom's entry 10/11/06Back from the clinic. Brynn did great. ANC is 1769, Hgb 11.3, Platelets 281,000. Everything looks great. While we were there, Brynn colored a picture of our family and gave it to PattiAnn, the nurse practitioner. It was such a nice picture and PattiAnn commented on how happy everyone looked. On the way home, we stopped at Starbuck's and had a treat. The steroids started moments ago. Up early tomorrow for the trip down to CHOP. Brynn said she missed Dr. Leahy and that she's her favorite doctor. 10/11/2006
Mom's entry 10/9/06Brynn woke up yesterday vomiting. She didn't have a good night sleep, woke up once crying. I thought she had a bad dream or something, so I brought her over to our bed and she fell back to sleep. She woke up around 6:30 and looked pale and asked for something to eat and drink. I should have known because that has been a precursor to vomiting before. She must think her belly feels hungry instead of feeling sick. Within minutes after a full glass of milk and a tart, she started vomiting. I felt so bad for her. She didn't even flinch about it. That happened a few times and I decided I needed to stay home from work. The rest of day improved greatly from the morning. The vomiting stopped and her energy level increased throughout the day. I spoke with the oncologist and it was decided to watch her since she's due for her regular visit tomorrow. And she did not have a fever or any other symptoms. I guess it's that time of year for all of the viruses, etc. It seems to have been a fast moving one. Paige has been fine. 10/10/2006
Mom's entry 10/2/06It's lumbar puncture month. I was lying with Paige this weekend while she fell asleep and counted only 4 more lumbar punctures after this one for Brynn. That's hard to believe when at the beginning of treatment they throw around numbers in the 30's. Brynn still wants to go to CHOP for them. The last clinic visit Dr. Julie asked us if we wanted to try conscious sedation again in King of Prussia. Brynn immediately said no. I don't think it's because she remembers the traumatic LP's in K of P, but just that she really likes to go to CHOP to see all of her nurse friends and Dr. Leahy. But, who knows, I could be wrong for how smart she is and how she remembers things. It makes me sad that she sees the trips to CHOP as a big adventure, but better for her that she does. And good for all of us. 10/2/2006
Mom's entry 9/26/06I saw this on our friend Jordyn's website and had to pass along. I believe Jordyn's Mom, Balinda, got from Michael's website: I watch you playing without a care. It's hard to believe the Cancer was there. You look so bright, so happy and well. If someone new met you they couldn't tell. Your strength is amazing. Your courage so strong. You've fought this disease so well for so long. It's from your strength that I draw mine. I know you'll come through this, it'll just take time. Carry on smiling, I will too. Through the hard times, I'll carry you. You are my world, the air I breathe. I know in my heart you'll never leave. Keep strong my love.The battle has begun, but with your strength it will be WON. This is so true and how Matt and I feel all the time. I do pull from Brynn and her strength and innocence for the world around her. What a special girl she is. I have visions all the time of Brynn as an adult and she and I having coffee and I'm telling her details about what life was like and what a brave girl she was through all of it. The girls and I met a Mom and her daughters at the park last week and we immediately started talking and felt a connection. She came out and asked if Brynn was taking medication. I asked her why and she said that friends of theirs from NC (where they relocated from) had a son who had leukemia and Brynn had a similar look. It astounded me because as much as I know that Brynn has a steroid look I never thought anyone that didn't know her would pick up on that. Funny enough, it was a week off steroids for Brynn and she still had the puffed cheeks and big belly that she gets every single month. Right before the next round of treatment, it all goes away to some extent and then starts all over again. The Mom was very supportive and sympathetic. So, we've made new friends and look forward to meeting up again. -------------------------------------------------------------------------------- 9/26/2006
Mom's entry 9/25/06Not much new to report, which is a good thing. Brynn is doing very well. No complaints, other than a twisted arm from a moon bounce this weekend. We went to an end of summer party and the girls were thrilled to see the moon bounce. Things got a little crazy and Brynn somehow fell on her left arm. The arm seems to be doing fine and we all had a nice time. I signed the girls up for soccer class that starts October 6. I guess the week after that will be Brynn's next round of treatment. Thank you to the Absher family for sending Brynn the sweet card from the kids. It really touched our hearts. 9/25/2006
Mom's entry 9/18Another month of steroids done! Another week for Brynn to settle out from them. Everything went well at the clinic on Wednesday. Brynn's ANC is right where it should be at 1700. Hgb was 12 and Hct 300,000. Vincristine given and we were on our way. I think she does better every month on the steroids as she's getting older. It seems she recognizes the changes she feels. It doesn't mean we don't have some rough times with crying and wanting held which is getting really difficult for me at 47 pounds. Dr. Julie explained to me that the steroids can affect their growth height wise and that the kids can tend to put on weight the two years of treatment, which I am seeing. But, in the first 6 months off treatment, Dr. Julie said that the kids usually sprout up a couple inches and even out. Pop Pop visited last weekend and the girls enjoyed their time with him, as did we. We wish he could visit more and spend more quality time with us. My birthday was yesterday and Brynn told me that I had the best birthday because I'm the best Mommy in the world. I melted of course. :) That's the latest with the Henrys. Everyone is well. Thank you for your continued prayers.9/18/2006
Mom's entry 9/5/06I've been out of touch for awhile. Brynn's ANC on the 30th was 1024 and the bee sting site is looking good. She's been full of energy and happy. She says once in awhile that she misses our old house, but I think she and Paige really love the new house. We're at the development playground almost everyday. We hope all of our friends and family are well. 9/5/2006
Dad's EntryIn some respects it is amazing to think that a year has passed, but certainly this has been the longest year imaginable. To have come this far, and be where we are, is truly a blessing. And as deeply as Halley and I love and care for our sweet little girl, it has been Brynn's immeasurable strength and will that has carried us. How can you not be inspired by such determination. We often refer to Brynn as a "force", and she is, her will is so strong...even in the worst of times you cannot help but be moved to carry on, to do more, when you see what she has been able to do, to overcome. As Halley has said, we are all very happy in our new home, thankful for this fresh start. The girls seem to love it. We do have so much to be thankful for, I am never blind to that. Brynn has done so well. Please continue to keep her in your thoughts and prayers. 8/28/2006
Mom's entry 8/26/06Today is the one year anniversary of Brynn's diagnosis of ALL. I cried this morning while Matt held me. I cried out of happiness that we've come so far in a year. I cried because I didn't lose my sweet daughter. I cried because I'm still angry and wonder why this is happening. I cried because I wish I was a parent that worried about normal things with their kids. I cried because I long for normalcy. I cried because of the fear I feel in the pit of my stomach everyday. I've gotten good this past year at pushing it deeper and deeper. I cried for the things I can't change in all of this. I cried for how alone Matt and I feel going through this. But, we wouldn't want it any other way - I never want anyone to experience this with their child. It was a long day of worrying for me. I just had this sense of dread all day. But, we got through it and the girls are in bed sleeping. The latest with Brynn is: she got stung by a bee on the 13th. Clinic visit on the 16th for counts and vincristine. ANC down at 800. Other counts stable. Counts showed that she was possibly fighting a virus. We moved on the 17th and 18th. On the 24t, the bee sting site started to look infected. We were at CHOP on Thursday having it looked at and counts checked. Potential for starting an antibiotic if ANC was still down. The good news was that ANC up at 2800, so no antibiotic. The steroids were difficult this month with the move and everything else going on. The bee sting site is starting to look better with warm compresses alone three times a day. We're back at the clinic this Wed, the 30th for a recheck of counts. We're supposed to leave for Camp Sunshine that night. Matt and I are still deciding if it will be too much right now with everything. The house is great. We're in with lots of boxes, but slowly getting settled. It's a great neighborhood. So, I guess the crying could also have been an aftereffect of everything that's been going on the past 2 weeks. I celebrate Brynn's life today and we'll keep plugging along for another year and 2 months of treatment. It was so nice to meet Jordyn at the clinic, what a cutie she is. I enjoyed talking very much. Maybe we'll see you guys on Wed. 8/27/2006
Mom's entry 8/15/06We move in 2 days! We're excited and tired and nervous all at the same time. We got in to Camp Sunshine and will be there Sept 1-5. The website is www.campsunshine.org if anyone wants to check it out. I think it will be a wonderful experience for our family and there is going to be another family there who's little boy has ALL and is in maintenance. I know the girls will love the adventure. We're thinking about our Aunt Menie who is going to have baby Mia any day. Our thoughts and prayers are with her constantly. In to the clinic tomorrow. Brynn's doing great and is having fun with her Nannie yesterday and today since Andrea is on vacation. 8/15/2006
Mom's entry 8/8/06Everyone is doing well. Nothing to report with Brynn, which is great. She's doing so well with her treatment and her hair is getting longer and longer with these sweet little curls in the back. It reminds me so much of when she was a baby. We're almost coming up on the 1 year mark since her diagnosis. The girls and I were looking at pictures this morning when she was in CHOP for three weeks. It seems so long ago, but at the same time like yesterday. She looked thinner, her hair was long, but she looked great. Not like she has cancer and I still now find it so hard to believe that this mysterious thing is going on in her body and we're fighting to keep it away everyday. We're nine days away from moving. So, it's crazy busy with packing and trying to get things done. Brynn has expressed that she's angry we're moving, but it has to be difficult for her to be leaving the only home she's ever known. Matt and I are so excited to be leaving for so many reasons that our close friends and family know. Thank you all for your kind words of support and the continued prayers going out there for Brynn. She's got another year and 2 months to go. It's like this imaginary finish line that I know is out there and the day we cross it will be one of the happiest days of my life. Brynn goes through it first and then the rest of us Henry's next. Sometimes at dinner, hope this isn't too corny, but we all put our hands together like in a football huddle and say, "1,2,3, go Henry's"! Usually Paige initiates it, which is no big surprise. She's so good for all of us with her kind heart and free spirit and a keen keen sense of what is going on in our house. Brynn is back in the clinic next week, I think 8/16. Doesn't it figure she'll be on steroids the weekend we're moving. We'll get through it and it will all be OK. 8/8/2006
Mom's entry 7/31It's midnight and I'm still up. We have so much going on right now - all good. But, there's just not enough time in the day to do it all. The girls and I traveled to my parents on Wednesday and we got back on Saturday. We had such a nice visit and we also got to see Doug, Deanna, and the kids on Friday night/Sat morning. It was so nice to see the girls having fun with their cousins, which we don't see any of them enough. Brynn is doing great. A little up and down coming off the steroids last week, but overall she handled them really well. Back to work tomorrow. The girls will have fun with Andrea. 7/31/2006
Mom's entry 7/20/06We're home from CHOP. Brynn's having a steroid cry as I write this. She doesn't want anyone at the moment and is just crying in her room. The bandaid from the LP is bothering her and she wants it off. Unfortunately, it's supposed to stay on for 24 hours. Everything went well yesterday and today. Counts in the clinic yesterday were good. ANC 2030, Hgb and Hct stable. They increased her 6MP a little bit due to growth and I'm assuming to get her ANC down a little bit. She got Vincristine and we started the steroids yesterday. Again and again I tell myself we'll get through it. Last month wasn't so bad and this month already appears to be a rough one. The lumbar puncture with GA went well. CSF is clear, no leukemia. Thank you God. Matt and I counted on the way down and we think we're down to maybe 5 lumbar punctures to go. They told me yesterday in the clinic that Brynn will be finished with her treatment on approximately 10/26/07. Almost one more year. It appears as though Brynn will get her wish to go camping. We're trying to get in to a camp for kids diagnosed with life-threatening illnesses called Camp Sunshine. We're in the process of filling out the application. It's supposed to be an amazing experience for the kids and for the families. It's in Maine and it sounds incredible. The crying has stopped momentarily, so I'll try to go back in and see if she's OK. Thank everyone for your prayers this week. Brynn needed them. She's doing great.7/20/2006
Mom's entry 7/13/06Still fighting the colds here, but everyone is fine. Brynn has some small congestion and coughs every once in awhile. But, I would say she is almost over it. Paige's nose is still like a faucet, but she's not coughing at much. They're wrestling around on the floor behind me while I type. They're definitely going to hit the tired wall around 4:00. Paige is belly laughing. I have no idea what they're doing. They are such buddies. When Brynn and I were at the clinic last week without Paige, the homecoming was like they'd been apart for days. It was pretty cute. Scheduled for Vincristine in King of Prussia next Wednesday and lumbar puncture at CHOP on Thursday. We're still doing general anesthesia for her LP's because it goes so well and they get a better specimen of her spinal fluid and that's what's key - to make sure there's no leukemia. Now Paige is crying. Gotta go7/13/2006
Mom's entry 7/8/06To See A World In A Grain of Sand & Heaven In A Wildflower Hold Infinity in the Palm Of Your Hand & Eternity In An Hour William Blake Paige has the cold now and was up all night last night. :) It was inevitable. Brynn is doing fine, seems better each day. I still don't know how I'm avoiding it. I've gotten very good at positive thinking. It will almost be a year that Brynn was diagnosed with leukemia. Hard to believe. When we were down at CHOP on Thursday, we saw both oncologists that treated Brynn in the hospital. It was so good to see them and they were genuinely touched to see Brynn and hear how she was doing. Amazingly, even though we live with this "heaviness" on our shoulders everyday, so many burdens feel lifted. 7/8/2006
Mom's entry 7/7/06We spent most of the day at the oncology clinic in Philadelphia yesterday. Brynn started a low grade fever around 1:00. I called and they wanted her checked. They did a CBC and a chest X-ray and after everything, determined she has a bad cold. The fever subsided without any Tylenol and her chest X-ray was clear. ANC is 2400 and Hgb and Hct stable. So, we fought our way home in nightmare traffic, took about 2 hours. Brynn slept well last night, only heard her up once coughing. Today, she says she feels better, seems less congested and is coughing once in awhile. I'm relieved, but also know that a fever is still possible. But, at least she's got a great ANC to fight the virus she has. I hope everyone has a good weekend.7/7/2006
Mom's entry 7/6/06Brynn was up vomiting last night. Lots of mucous and head congestion. Still no fever. I still haven't called the clinic. I don't think they would tell me to do anything different than what I'm doing. Her cough actually sounds a little better. I'm really hoping on a quick moving virus. Praying for no fever.7/6/2006
Mom's entry 7/5/06I think Brynn might have whooping cough. She started to sound hoarse before bed last night and then woke up with that barking cough a couple times. But, she went back to sleep. She was restless, I heard her in her room alot as I wasn't sleeping much. She seems fine this morning. Only coughing once in awhile. I'll watch for a fever, of course. Matt has had a cold, so I've been waiting for one of them to come down with something. Amazingly enough, I'm hanging in there healthy, Paige too. We were supposed to visit my parents this weekend. That won't happen as long as Brynn is coughing. Too far from CHOP at my parents. Brynn also complained of belly pain yesterday, almost an hour after her Bactrim. So, I think that's what was going on last month too when she complained of belly pain - also the same time she was on Bactrim. I'm going to make sure she drinks alot of water when she takes it. Keep your fingers crossed for no fevers!7/5/2006
Mom's second entry 7/5/06I meant croup. Don't know why I said whooping cough. Hope everyone had a nice 4th of July. We had a nice day packing and playing, went for ice cream after dinner.7/5/2006
Mom's entry 6/25/06Brynn's doing so great with the steroids this month. Usually a good cry every day, but other than that, not the usual taking it out on Paige so much. They've been very affectionate and playing great. We had a nice weekend. Lots of visitors today it seemed. Brynn watched Extreme Home Makeover with us tonight and the Mom of the family had stage 4 cancer. Brynn kept asking all these questions about why she was wearing a wig and why they were crying, etc. Matt and I kept looking at each other because we could totally relate to everything the Dad in the family was saying about living life to the fullest every day and being so appreciate for every moment you have with that person who has cancer. Cancer is not easy to beat and as they were saying that I was making Brynn's medicine. It's sometimes incredible to me to think that I've been making medicine for Brynn every day for almost a year now and we still have over a year to go. I said to Matt that no one will ever know what any of this feels like, what it really feels like until you go through it and I hope no one has to go through it and live it like we are. But, because we are, we have a new lease on life and what everyday brings to our family. Hope6/25/2006
Mom's entry 6/22/06Brynn had her appointment at the clinic yesterday. Everything looks good. ANC is 1980 - right where it should be. Hgb is down a little bit from last week at 11.7, still OK. Everything else stable. Brynn did great like she usually does. She really likes PattiAnne who did her exam yesterday. We started the 5 days of steroids yesterday. She has the steroid look in her eyes. No major mood swings yet. I wonder as she gets older if she'll be able to handle it a little better. She seems to understand the changes she feels in her body a little bit. She was trying to go to sleep last night and was a little bit cranky and said it was because of the steroids. I think it was normal 4 year old tiredness and crankiness at the end of the day. Who knows. They sent more LFT's and electrolytes yesterday to make sure of the belly stuff from last week. I didn't hear anything, so I'm assuming everything is OK. It's so hot out today, we may just stay inside. We missed seeing you yesterday, Abigaile. Hope all is well. 6/22/2006
Mom's entry 6/19/06Brynn's belly is much better. No complaints all weekend. her energy was so much better. She and Paige were running last night like crazy. We couldn't get them to calm down. I love hearing their giggles. Sue, you are so right. It's so easy to let your imagination run wild with the slightest little thing. Brynn complained of belly pain for about a month before we was diagnosed with ALL last summer. It just brought back all of those memories. For her too, I think. Brynn's due to go to the clinic on Wednesday for Vincristine and counts. 5 days of steroids start on Wednesday. 6/19/2006
Mom's entry 6/15/06PattiAnne called last evening at 5:00. The rest of Brynn's labwork looked fine. Her AST or ALT was mildly elevated, but I don't think unusual for receiving daily chemo. Electrolytes were fine. It was so nice that she called and wanted to know how Brynn was doing. The rest of the day was fine. I'm up at 6:00 for some reason while Brynn and Paige are still sleeping. I hope Brynn wakes up much differently than she did yesterday. It's amazing through this process you learn to block out negative thoughts and fears. It's a conscious effort, but I'm getting better at it.6/15/2006
Mom's entry 6/14/06We were at the clinic this morning, unexpected visit. Brynn has been having trouble with her belly. Intermittent pain, vomiting, and loose stools. She woke up this morning and didn't look well or feel well. She complained of nausea and her color was pale. So, we were on our way shortly after waking up. In the clinic, she continued to be sick. PattiAnne examined her and Brynn had some rebound tenderness on the left and right sides of her abdomen. They accessed her port, took blood work and we waited. While waiting, Brynn said she started to feel better, even before Zofran. Her counts came back great. ANC is 2300, Hgb 12.3, Hct 23. So, we're home after some IV fluid and Zofran. They'll call me this afternoon if there's anything unusual with her electrolytes or LFT's. They're thinking she has maybe some gastritis. Otherwise, everything else looks good. She just ate a good lunch and has been playing with Paige. She says her pain is a zero. :) We're working on the pain scale. It was a 3 in the clinic she said. Anyway, I'm amazingly calm while I think Matt is nervous (usually the other way around). Even if something turns up, we'll head to the hospital and they'll help her. I know it. 6/14/2006
Mom's entry 6/12/06This morning I took Paige to see Dr. Gazdick for her 3 year well check. It brought back so many memories from a year ago when Dr. Gazdick saw Brynn right before she was diagnosed with ALL. It's hard to believe that it's been 10 months or a year that Paige has been there. We used to be there every week, it seemed. It was so good to see her and talk to her. She was anxious to hear all about Brynn and how she's doing, Paige too of course. She said it breaks her heart that Brynn is going through what she is. She said she has a doll for Brynn in the upstairs of her house that she could never bring herself to bring to the hospital. She had tears in her eyes when she told me that. Paige is doing great and right where she needs to be. The worst part was the finger stick for cholesterol. Brynn was so cute before we left. She told Paige that she gets them all the time and it would be OK. On the way home, Paige kept asking why Jackie hurt her like that. All in all, it was a good morning and I look forward to the day that Brynn will be back seeing Dr. Gazdick for her well checks. Dr. Gazdick said her husband does the endocrinology follow-up checks for leukemia kids. I'm sure the girls are having fun with Andrea. I'm really worn out this week. Everyone always says to take care of yourself, but sometimes that's the last thing on the list. Just a little bit of rest will do the trick. 6/12/2006
Mom's entry 6/606Today is Paige's birthday. I can't believe she's 3. She was really upset when I left for work this morning - crying at the window. Talk about guilt. She's in great hands with Andrea and hopefully Brynn was helping her too. Brynn is so funny. Paige was crying for me to not leave, meanwhile, Brynn was sitting down putting her shoes on ready to go outside to play with Andrea. Anyway, my first week doing normal hours at work is going well, aside from Paige's separation anxiety. Hopefully, the girls are at home making cupcakes with Andrea and we'll have a birthday celebration this evening. Brynn is doing great. I have pictures of the Relay for Life to post. 6/6/2006
Mom's entry 6/1/06Another month of steroids are done. The five days on went really well. Not alot of mood swings. I was actually questioning the lot thinking they weren't working. But, there was alot of crying before bed and the hunger increased towards the end. Otherwise, Brynn did so great. She continues to amaze me. Paige did well too. It's so amazing that she can pick up on when Brynn is "different". It affects her as much as it does Brynn in many ways. She's up through the night, a little more sensitive, and keeps to herself much more. This weather has been wonderful for them to be in our little pool. They're having a blast. Brynn loves it. We've been given the OK for any kind of vacation for the summer. The beach is OK, swimming is OK, so we're excited. Hard to believe that this all started for Brynn when we were at the beach last summer. Well, it started long before that unknown to all of us. Hope everyone is having a good week. 6/1/2006
Mom's Entry 5/25/06Brynn has a virus. She woke up yesterday morning and started vomiting around 6:30. Funny enough, after Brynn vomited, I vomited. She vomited a couple times, we gave her Zofran and she stopped. She slept about an hour and when I woke her up to go to the clinic, she said she felt better. Her exam was totally benign, everything looks good. Her counts, though, were completely reflective of a virus. WBC count was 10, ANC 9,000+. It's a good sign that her bone marrow is working correctly to fight off a virus. Hgb and Hct are stable. She got her Vincristine and we started the steroid roller coaster and 6MP, Methotrexate last evening before bed. Glad that she didn't have to come off her meds. That's the main thing with Leukemia, keep them on their meds. Brynn was fine the rest of the day, ate and drank and played all day. She was up a few times last night, continuing my sleep deprivation, but that's fine. I probably would have been restless anyway listening for vomiting. She's completely fine today. I would be curious to see what her ANC is today. But, we're not due back to the clinic in a month. It was so great to see Karen and Abigaile yesterday. I wish we would have more quality time to talk. Abigaile looks great! And Gina is about ready to start maintenance!! Yeah Gina! You look great too. And we saw Emily. Her hair looks so beautiful and she looks wonderful. Everyone at the clinic that cares for Brynn, we thank you over and over. You're all so great with her. Nannie left yesterday, sad to say. We all loved having her here. She helped us tremendously as usual. We're always sorry to see you go, but know that our visit to your house isn't far away. I'm going to try to get some pictures on the website of Brynn's sweet hair. Everyone that sees it has to touch it. I love you Brynn and Paige. You both are amazing kids. 5/25/2006
Mom's entry 5/22/06My heart is saddened today as our friend Bradley Caraker is laid to rest. What a brave boy you were for your fight against T-cell leukemia. We will always remember listening to music with you in your room at CHOP. God bless you and your family. 5/22/2006
Mom's entry 5/20/06I can't begin to describe how inspirational and moving the Relay for Life was yesterday. To see so many people and caregivers fighting and winning the battle against cancer was amazing. The girls were so excited as soon as they woke up because they knew Nannie and Pappy were coming and Mom Mom and Daddy were all going to meet us at "the party". It was a breezy and chilly day, so we bundled up and headed out to the Valley Forge Military Academy. Brynn was so cute, Paige too. We took their bikes and Brynn was doing laps around the track. It took a little while to get things started, but once it did, Matt and I were moved beyond belief. Each team took a lap to start things off. Andrea Barnes, the chairperson for the Main Line Relay for Life and also our new babysitter/Nanny, called out Brynn's name on the loud speaker. She said, "and give a big cheer for that little girl on the bike, go Brynn!" Brynn had this huge smile on her face the whole way around the track. The most amazing part was the survivor ceremony. They had some people talk about their cancer story and how they are now survivors. All of the survivors had purple t-shirts on. Brynn didn't want to wear hers, but she held it while she rode on Matt's shoulders and all of the survivors took a lap around the track. The track was surrounded the whole way around by people cheering, clapping, yelling, crying with support of all of these amazing people beating the odds. I'm sure Brynn didn't realize really what was going on, but I know she felt special in many ways - I could see it on her face. Then, there was a caregivers lap and we all went, Nannie and Mom Mom too. Again met by cheers and smiles. You could just feel the love and support from all of these people that don't even know you, but they feel the courage emanating from this group of survivors. After the laps, there was a survivor reception with cake and ice cream. Brynn got to put her hand print on a survivor banner and she wrote her own name under it and Andrea wrote, "9 months". Brynn is a survivor of ALL for 9 months. Thank God. We are going to do this amazing event every year to honor Brynn and everyone who is affected by cancer. It was so great. There were tents everywhere and barbeques going. It was the most I think I have felt a bond or a part of something (in a positive way) since all of this started 9 months ago. I am going to carry this with me everyday and when I'm feeling low, I'll think of those laps that we did and how I felt my heart bursting with pride as I looked at Brynn riding on Matt's shoulders smiling. We held hands some of the time and I kept squeezing that little hand that I will hold forever. Paige was so good. She had her monkey and rode in the stroller and loved eating her cheese puffs. Mom Mom brought us wonderful food and Chamois couldn't go in, unfortunately, so Pappy stayed in the car with her most of the time. Thank you Andrea and all of the members of the American Cancer Society that put together such an amazing event. You have helped us more than you can ever know. Helped our healing and motivated us even more to get through this everyday. Thank you Janene for listening to me on Thursday. I hold so many of my feelings at bay most of the time that I never know when it's going to come out. This journey is such an emotional roller coaster. And one that we will be on the rest of our lives. Brynn has a clinic appointment this Wednesday. Scheduled for Vincristine and starting steroids for the month. My Mom is staying with us until Wednesday. Thank you for helping us and loving the girls like you do.5/20/2006
Mom's entry 5/15/06My thoughts and prayers have been with Bradley Caraker and his family constantly. I hope all of the Mom's had a nice day yesterday. Being a Mom is the greatest thing in the world. 5/15/2006
Mom's entry 5/11/06Brynn's ANC was 1606 yesterday!!!!!!!! Above 1000 and right where it should be, so she stays on her current full strenth of medications. Brynn was actually disappointed that we were not going to CHOP today for a lumbar puncture. I guess it's a good thing she likes to go there and likes her doctor so much. Andrea came to visit today and the girls really had fun. It will be nice to have her helping us and I can work some more normal hours. Everybody is good. Brynn is now pulling up on the little hairs on top of her head now and she kind of talks to them. It's so cute. Pagie seems to have made it through the developmental stage/growth spurt she was going through because she has settled out and is her usual happy self. NO more screaming, thank goodness. :) We're excited for the Relay for Life next Friday and Saturday. Brynn wearing a little survivor t-shirt will bring such a smile to my face and my heart. She certainly is a little fighter and a survivor, if she only knew the half of it. I'll be so proud to walk around the track and hold her hand and let her be an example to everyone of what an amazing thing fighting cancer is and winning the battle feels so good! 5/11/2006
Mom's entry 5/4/06Brynn said the sweetest thing before I left for work. She told me how pretty I looked and then that she wanted to get me something for Mother's Day. She said, "I don't know what it will be, but it will be something special." It touched my heart. We had a nice day, well needed after the past few days. I wish I could say coming off the steroids this month was easier, but it was again kind of tough. I think she did great. But, there's always ALOT of yelling, crying, and screaming and a lack of sleep for me. I crashed last night and must have been comatose because I didn't hear Matt leave or getting ready. The girls both slept until 8:00 - thank goodness and I got some well needed sleep. We're back to the clinic on 5/10 for a count check since Brynn's counts were quite 1000 at the last visit. Brynn's doing absolutely great and Paige is the sweetest sister to Brynn there ever could be. We made water balloons this afternoon. :)5/4/2006
Mom's entry 4/29/06Brynn's doing really well with the steroids. Today is Day 4. I think being outside helps to distract her. She said yesterday they make her feel funny. Mom Mom came to spend the night last night which was fun. The girls were thrilled and Matt and I too. Anytime family wants to stay with us for a little while to give us support and help, we take it. Brynn is not going to relapse. The more people telling me that, the better. We're all doing the Relay for Life on May 19 foar the American Cancer Society. Our church is walking for Brynn and she'll participate in the Survivor's Ceremony that evening. Have a good weekend everyone. 4/29/2006
Mom's entry 4/27/06BRYNN OFFICIALLY STARTED MAINTENANCE THERAPY YESTERDAY!!!!!!!!!!! Wow, it feels so good to say that. Even though, nothing really changes in the course of her treatment, it feels great to say it. Actually, her lumbar punctures go to every three months and clinic visits should be once a month unless she's back to have counts checked. Which is where we're falling right now. Brynn's ANC was 960 yesterday. Still under 1000, but close enough to get her chemo. Dr. Julie said yesterday if there would have been one more neutrophil, she would have been at 1000. I was surprised that it was still under 1000, but apparently there is an adjustment time in maintenance and going into maintenance that the counts can go up and down a little bit. Dr. Leahy explained it really well today. It's like driving a stick shift. You have to get from one place to another, but have to shift back and forth between gears alot. The goal is to keep the ANC around 1000-2000, but not to let it dip too low that the kids are off chemo or "taking breaks" too often. Dr. Leahy is so great with Brynn. Everyone treating Brynn at King of Prussia and at CHOP is awesome. Amazing, kind, and wonderful people. We were up at the crack of dawn and driving into CHOP this morning. Brynn did great with the lumbar puncture. She got IT methotrexate and Vincristine, along with dexamethasone and Zofran. I think back to those earlier LP's and we've come along way. Funny to think that an LP can become somewhat routine. Continues to put things in perspective for me every day. The CSF continues to be clear, no leukemia, thank God. I had to leave for work shortly after we got home. I felt a little bad leaving. Brynn had circles under her eyes. She definitely had the chemo look. But, she did great, as did Paige and Matt. Everyone waving at me through the window as I drove off. I just have to say how pretty Brynn looked yesterday and so healthy. Her hair looks so adorable, I can't wait for everyone to see her. Her cheeks were nice and pink and she's losing the steroid look to her face. Of course, she always looks pretty, but yesterday I was just struck by what a little beauty she is. Yesterday we were outside playing after we got home from the clinic and Brynn said, "Mommy, you know what I wish for?" She said, "I wish I could play with my little sister forever." I, of course, told her she would. There's not a doubt in my mind about that. 4/27/2006
Mom's entry 4/20/06Brynn's ANC was 779 yesterday, so we're on hold another week before starting maintenance. I thought for sure it was going to be over 1000, so I was surprised when Dr. Julie gave me Brynn's counts. She reassured me that it's nothing other than she needs another week for her counts to recover and some kids go up and down a little while going into maintenance. She talked a while with me and answered alot of my questions about relapse. I'm not worried that Brynn is going to relapse, it's a thought that will always be there, so I had to ask some questions that I've had for awhile. We had fun yesterday after getting home from the clinic. It was a beautiful day and we were outside most of the time. Paige is definitely going through a growth spurt, developmental stage, independence at it's best. She's been a little grouchy and sensitive about everything. She has her Daddy's temper and her Mom's sensitive side. And they both have wills of steel. So, Brynn's off meds for another week until next wed. No lumbar puncture today. I'm off to work this evening and then in the office all day on Saturday. 4/20/2006
Mom's entry 4/18/06I went back to work yesterday and it felt really good. The girls did great with Mom Mom Beverly and we thank her so much for helping us. I left the house around three and the girls were both waving and blowing kisses. Totally the opposite of what I expected. So, it was a nice send off for me. Matt said dinner and baths went really well and when I pulled in around 9:00, everyone was ready for bed. I couldn't get to sleep and Paige was up a few times, so I'm dragging a little bit today, but feel great that this is going to work. We're off to the clinic tomorrow for Vincristine and counts and lumbar puncture down at CHOP on Thursday. Then, the lumbar punctures go to every three months. Hard to believe. Thanks everyone in WPS for your support and well wishes as I return to work. And to my family and friends as well. Also, a big thank you to everyone in Merck's product labeling department. I only had a short stay there, but feel like I made many friends and everyone was so supportive. 4/18/2006
Mom's entryI find myself missing writing entries in the journal, but the good thing is that I'm not writing entries everyday because Brynn is doing so well and we're just living life and she's just being a normal 4 year old playing with her sister. Her hair is really coming in now. She doesn't talk about it much, but it's getting longer everyday. She told me yesterday that she didn't like seeing Paige's cute hair swinging from side to side as she ran in front of us. So, I know it still bothers her that her hair came out in many ways, but the fact that it's coming back is so reassuring to her. I actually love to fuzz those little hairs on her head. She let me hold her for a long time this morning and I never want to forget how it feels to rub those sweet little hairs on her head - a huge reminder to me that she recovers little by little everyday. I gave her the last dose of 6MP and methotrexate last night before we go to the clinic next week. She needs to be off everything for a week to check counts prior to starting maintenance. ANC needs to be over 1000 as usual. I'm starting back to work on Monday, part-time, back in my old department in safety. Merck has been so wonderful with me and has worked with me over the past 8 months and I can't thank everyone enough. I'll be working in the evenings, at home, and every Saturday. My search now is for someone to come in to stay with the girls until Matt gets home and then eventually all day, as the expectation is for me to do all my hours in the office. I'm working on it. Brynn's not too happy about me leaving the house, ever, but this is going to be good for all of us. It's nice to feel like life is getting more normal. I still worry about relapse and I know that will always be there, but I know that Brynn is stronger than the leukemia will ever be and she'll beat it. I know it in my heart. Have a very happy Easter to you all. Thank you for your continued support and prayers.4/13/2006
Mom's entry 4/5/06Brynn's doing great everyone. The week of steroids and coming off was the same, lots of ups and downs. Things have stabilized out and the girls are friends again and everyone is sleeping well. We're not due back to the clinic until 4/19 for chemo and a lumbar puncture on 4/20. If her ANC count is above 1000, we start MAINTENANCE!!!! I can hardly believe it. I never thought that day would come and now it's right around the corner. Brynn's hair is really coming in and she looks so pretty. She seems to be thinning out a little bit too from all the steroids with being out and running around. It's still crazy busy, but you can almost feel the sense of normalcy returning a little bit. Our lives aren't so much defined by leukemia. It's there alot, but not like it was the past 8 months. I'm trying to return to work on a part-time basis. I have months and months of benefits to pay back and I can't lose the benefits, so hopefully we'll all adjust to the new schedule. Brynn isn't happy already and is giving me grief, but it will be OK. I know it will. One day at a time, just like we've been doing. I want to say Happy Birthday to Olivia yesterday. Thanks Doug for the aqua background - it looks great. Not much else new. I'll take it!4/5/2006
Mom's entry 3/24/06I'm glad it's Friday and the past two days are behind us. Brynn did great as usual. We were at the clinic on Wednesday for counts and Vincristine. Brynn's Hgb is 10.5, platelets 200 or 300,000, WBC 3, ANC 3400. The ANC is actually a little higher than what they would like. It should try to be maintained between 1500 and 2000 with her oral chemotherapy. Dr. Julie said we'll give it a couple months and if it continues to stay high, she'll up her 6MP and methotrexate. But, otherwise, everything looks fine. We all packed up in the morning yesterday and headed to CHOP for her lumbar puncture. Everything went well. No leukemia in her CSF. And we did Zofran before we left, so no vomiting the whole way there. What a difference that made. We got to see Dr. Leahy which was great because Brynn really loves her. I can't say enough about the people at CHOP. They're so great and Brynn is so comfortable now that she just walked in to the procedure room yesterday and what chatting away with the anesthesiologist. The steroids started again on Wednesday. We're on day 3 now and 2 more to go. I think I'll just try to keep Brynn as busy as I can with art projects and Paige seems to sense what's going on because she stays in a different room alot of the time.3/24/2006
Mom's entry 3/20/06I'll write more later because I only have a minute, but just wanted to say thank you, thank you, thank you to EVERYONE that came out Saturday night in honor of Christopher Bradley to help our family and Brynn. Words cannot express what it means to us to have such an extensive network of people through CBF, family, friends, work, and our church to say they love us and are behind us to get through what we face everyday. Thank you to Delia and Peg and the committee that put together such a wonderful party. I can't tell you how nice it was to get out and feel festive after the months and months of heartbreak watching Brynn go through what she has. But, as I told many of you, I've honestly never seen Brynn or Paige happier. And there are good things that have come out of Brynn's Leukemia. Having each other and being together the past few months has created a bond so strong between us that will never be broken no matter what. Thank you to our family. Mom Mom that did so much work behind the scenes collecting items for the raffle, running everywhere for whatever was needed and being there for Matt and I. Thank you to Aunt Menie who stayed with the girls and made their night fun as well. Thank you to my parents and my brothers for making the trip. Mom, your cupcakes were delicious as I knew they would be. Dad, people are still telling me how funny you were giving people a hard time about stuff. :) And I will wear my aqua scarf in honor of Brynn and always think of you when I wear it, Mom. Thank you to Pastor Kane who came to speak and bless the party before it started. All of our friends from work - so good to see you there and feel a touch of normalcy and reconnect about your families. Kristi, I love you and you will always be an important part of my life even if we go months without talking. My sweet Brynn, your life is the most important thing and I honor you everyday and your strength. I love your heart, your spirit, your smile, your stubborness and strong will. Your are a sweet girl full of life and smarter beyond your years. I will do no matter what I have to in order to win this battle! Matt, I love you and couldn't ask for a better husband or father for our girls. And to all of those people that I didn't get to meet or talk to, thank you as well for touching our lives to help our girl. Chrissy, I can't wait until you can come watch our girls. I felt an immediate connection with you and I know Brynn and Paige did too. I hope I get to see all of you soon - Trish, Dorothy, Sue, Peg, Delia, Kathy - who else am I forgetting? I think you're all great and amazing people. 3/20/2006
Mom's Entry again 3/20/06I forgot to say our schedule this week. Back to the clinic on Wednesday for counts and chemo. And then down to CHOP early Thursday morning for lumbar puncture with intrathecal methotrexate. Then, hopefully, we're off again for another month. Another round of steroids starts on Wednesday - five days. I hope for the best but am prepared for the behavioral stuff. Brynn's counts should be great - she's full of energy. Paige slept until 8:30 this morning which was great for her. We were all so tired yesterday. Matt and I were asleep by 9:30. Brynn slept until 7:00 which was good for her. I still can't get over the feeling of Saturday night - it was so wonderful for all of us and I hope continues to be healing for Christopher Bradley's family as they honor him with the help they're doing and giving.3/20/2006
Mom's entry 3/14/06Hi Everyone. No new news to report, which is good right? Brynn's doing great. She's been running around like crazy. I see her belly go down it seems almost everyday. What a difference not being on steroids for all of us. She's happier than I've seen her in a long time. We're really looking forward to seeing everyone on Saturday. 3/14/2006
Mom's entry 3/9/06We're having a good week. It's amazing what it's like when the steroids are out of Brynn's system. No fighting and yelling this week. What a difference. We went to the clinic on Monday to check Brynn's counts. We noticed some bruising and petechiae over the weekend. When I called to ask on Monday, they said to come in for counts. Brynn's ANC is 1400, Hgb. 8.8 and platelets 120,000. She's fine. Both girls napped yesterday at the same time. I don't think that has happened for years it seems. It was nice to have some quiet time for the first time in I can't remember. I can't wait to see everyone on the 18th!! Jen, it was so nice to have coffee on Saturday. 3/9/2006
Mom's entry 3/3/06It was funny - I had to take Paige to the ENT physician today for her ears. It felt so strange because it wasn't a doctor's appointment for Brynn. We had a nice day. Mom Mom went with us and stayed in the car with Brynn while I took Paige in for her appt. Ears and tubes are fine. What a difference a winter makes for her and not being in a daycare setting. Then, we all went into starbuck's and Mom Mom's pharmacy. You can tell we've been inside all winter because you would have thought we were in Disney World looking at all the things at Lionville Natural Pharmacy where Mom Mom works. We had fun and then stayed outside for awhile in the freezing cold when we got home. Brynn continues to do well and seems a little bit happier today. Thank you Doug for entering the new pictures and song on the website. Brynn LOVES the green background since that's her new favorite color. Mom Mom says it's a healing color. How appropriate. :)3/3/2006
Mom's entry 2/28/06Last day of February! I keep forgetting to enter something very important - Brynn has tiny little hairs starting to come in. They're very light and fuzzy. It reminds me of when she was a baby. She's so excited as you can imagine. Yesterday was a rough day coming off the steroids. Sometimes that seems to be the worst day. Today seems a little bit better so far and she slept a little better last night. She was excited to wake up and see the snow. She ran into our bedroom yelling, "wake up everyone, it snowed!" I think we need to get out of the house soon. Maybe we'll go for a drive today.2/28/2006
Mom's entry 2/27We finished a course of steroids on Sunday. I feel like I can already see a difference in Brynn's mood and energy level this morning. Nothing planned for this week, which is good to have a break after last week. Pastor Kane visited yesterday and it was so good to see him. He lifts our spirits and says such beautiful prayers for our family. Mom Mom spent the night on Saturday and had fun with the girls. So nice to have her here, so it was a very nice weekend for us despite the mood swings of steroids. We're getting so excited to see everyone on the 18th. So happy to see on Bradley's website that the cells are growing! Keep up the great work, Bradley! Brynn's yelling at me to get off the computer so she can type an email to Brad (Daddy's friend). :)2/27/2006
Mom's entry 2/24/06Brynn's ANC count on Wednesday was 1148! She's officially done with delayed intensification and started a 2 month interim maintenance. Platelet count is great at 400,000, but her Hgb is still low at 8.8. They're hearing a little bit of a murmur from the low volume, but don't want to transfuse if possible. Her reticulocyte count is 3.5 which shows her body is making alot of red blood cells, so that number should go up. Brynn was reallly happy at the clinic on Wednesday, Paige too - playing alot. She got Vincristine and we were on her way. Started a 5 day course of steroids and I gave her methotrexate and 6MP Wednesday evening. We all got up around 5:00 Thursday morning to be down at CHOP by 9:00. It was a really tough drive in. We didn't even make it down Swamp Pike before Brynn was saying her belly hurt and the vomiting started and continued into the waiting room at the CHOP clinic. They gave her a 24 hour dose of Zofran before her lumbar puncture and some IV dexamethasone which is helpful to calm her stomach. I'm sure it was nerves or a combination of all the meds I gave her the night before. Those drives really wear me out. It was a long day at CHOP. We ended up waiting over 2 hours for anesthesia to arrive, so she didn't even go in until around 11:30 or 12:00. The procedure went fine and her spinal fluid is still clear of leukemia, thank God. She received fluid and we were on her way. Brynn was so happy to see Dr. Leahy - she ran into her arms and gave her a big hug, having just vomited like 2 minutes before. She's really starting to trust all the people treating her and forming relationships that we'll never forget. She was really tired last night and continues to be tired today. She's also saying her back is sore where she got her medicine - which I'm thinking is expected, but she's never really verbalized that before. She seems fine otherwise. Happy Anniversary Matt - I love you.2/24/2006
Mom's entry 2/21/06We're off to the clinic in about 15 minutes. Hoping for an ANC count over 1000. Brynn was really good yesterday and her energy level was better. Paige was up twice last night, but seems fine this morning. Just a restless night I guess. 2/22/2006
Mom's entry 2/20/06It's President's Day and Matt is home today which is nice. Brynn's energy level is down, but she's not really complaining of anything. She said she just feels tired. No fever. Maybe her ANC count continues to be low or her Hgb continues to be low? Just a guessing game for me all the time. When Brynn finished the first half of delayed intensification, she went through a period where she seemed very tired. Matt also had a cold last week, so maybe she's fighting something off. I felt a little bit run down yesterday and thought I might be getting his cold, but nothing. Oh boy, I hear screaming downstairs - something's going on with the girls. Better go.2/20/2006
Mom's entry 2/17/06Brynn's doing really well. Having a good week and it's been so nice not having to go to the clinic, except for Mondoay. She woke up last night around midnight and asked for milk. She's never done that, but I guess she was just thirsty. She went back to sleep right away holding her milk. Brynn keeps talking about how she has little hairs that are hiding underneath her head ready to come out at anytime. I told her she's right. She even said when her hair comes back in and grows long enough that she would let me put a braid in it - which she never let me do before. It bothers me sometimes that I now feel almost used to her with her little hats on and no hair. I shouldn't have to ever feel "used" to this, but that's the reality of the situation and Brynn having no hair is a huge reminder that her body is healing and getting rid of the leukemia. I should have pictures soon to have posted to the website of Brynn in her little hats. We're scheduled to go to the clinic next Wednesday. If Brynn's ANC count is above 1000, she'll start interim maintenance. Lumbar puncture scheduled on Thursday down at CHOP under general anesthesia. Yesterday, Brynn looked at me and said, "Mommy, I am a beautiful girl." It made me so happy that she could say that because she is my little beauty. Paige is so sensitive to Brynn's moods and needs. They've been such buddies this week, playing really well together. We've had a blast out in the snow and they're now sledding down our back hill by themselves. Brynn said only 4 year olds can do that. Apparently 2 year olds can too. :)2/17/2006
Mom's entry 2/14Happy Valentine's Day. We're about to go downstairs and make Valentine's Day cards for everyone. It's funny because Brynn actually was the first one to say this morning that it was Valentine's Day. I lost track of the days. Brynn had a good visit to the clinic yesterday. Her Hgb is holding its own at 9.1, so no blood yesterday. Her platelets are already up to 286, 000 and ANC is 128. Dr. Julie said that she's most likely recovering from delayed intensification already. I was so happy to hear that. It's been a long two months and Brynn has done so well. We're that much closer to maintenance. Two months of interim maintenance before we get there this summer. Brynn looks so good. Her cheeks look pinker to me everyday and she's having a blast out in the snow. Our continued thanks to all of our friends and family helping us and everyone networked with the Christopher Bradley Foundation for putting together the event in March for Brynn. Someday, as a result of this, I'm going to do something so amazing to give back to families in need. It's in my heart and Brynn, my sweet amazing girl will never know what she has inspired in all of us, until I tell her when she's big enough to understand. 2/14/2006
Mom's entry 2/10Happy Birthday sweet Brynn. I can't believe you're four and this birthday holds a very special place in my heart. We all spent the morning at the clinic. Brynn did not get blood today. Her hgb is 9.0, platelets 100,000 and ANC down to 28. They don't like to give blood unless her hgb would drop below 8.0. So, we're back to the clinic Monday. I'll have both of the girls with me. We all had a good day, except Brynn was a little on edge and grouchy all day. I can't imagine she feels that great with such a low ANC count and low Hgb. She has such strength and intelligence, it's just unbelievable. Brynn's favorite present was a Max and Ruby stuffed animals. Happy Birthday Nannie (Mom). I'll never forget being in labor so long waiting for Brynn and then she ends up being born on your birthday. I hope you had a nice day too. Thank you all for your love and support. Bradley, I hope your bone marrow transplant went well on Tuesday. I said a special prayer for you last night. 2/10/2006
Mom's entry 1/9/06Nannie left this morning. We were all sad to see her go. But, we had so much fun and thank her for all her help. Brynn did not get a transfusion yesterday. Her Hgb was 9.9, platelets 133,000 and ANC in the 300's. So, we're back tomorrow on her birthday to check counts again and probably get blood. Matt took the day off, so after we're done, we'll celebrate and have a nice day. 2/9/2006
Mom's entry 1/6/06I haven't written in a little while. Last week was busy with clinic visits mon, wed, and fri. Brynn's doing really well, right on course for her treatment. She received one unit of PRBC's on Wednesday and back in on Friday to check her counts. Her platelets were 65,000 and expected to drop over the weekend. It was a weekend of worrying for Matt and I, but we all made it through OK. Brynn's ANC count is running 400-500. We had an appointment first thing this morning at the clinic and Brynn's platelets were 32,000, but she had more petechiae than she did on Friday, so they gave her a unit of platelets. We're back in on Wed for counts and maybe another unit of PRBC's. Brynn's HGB was 10.2 today. Matt's Mom was here over the weekend to help and my Mom met us at the clinic this morning and will be here for a few days which is so nice. I hear Brynn downstairs giggling with her and Paige is here with me busying herself. Brynn's birthday is Friday and I really hope we don't have to go to the clinic, but if we do, no big deal. Thank you everyone for your kind words in the guestbook. I'm so happy to hear from you Eileen. I'm sorry that Bradley relapsed, but he's going to do great after his bone marrow transplant. I want to check on everyone, but I'm having trouble navigating the caring bridge website and don't have much time. For the brief time we were all together in the hospital, I feel a connection with the families that we met there and wonder all the time how you all are doing. Noah, did you start delayed intensification? Abigaile, how are you doing after your transplant? Bradley, thank God you have a perfect match from your sister. Evan and Olivia, we can't wait to get together and play dress up. Matt and I can't wait to see all of our friends and families on March 18 and meet new people and just have a good time! I'll check in later this week. 2/6/2006
Mom's Entry 1/31/06Brynn had a good visit to the clinic yesterday. Her ANC is 150 and Hgb is down to 9.1. Dr. Julie anticipates that she'll need blood Wednesday or Friday. Her platelets are down to 200,000. Brynn's doing great. She's sleeping well and in pretty good spirits. Her appetite is definitely down just as they said it would be. We were outside for a couple of hours yesterday and had a great time. More people to thank on the website. Pam's family at Christmas time for all the giftcards. I have every intention of getting thank you cards out to people, but just haven't found a way yet. The flyer has been written for the fundraiser in March which I'll forward out to everyone. I hope Brynn will be able to make it so she can see all the people that love her and want to help. She truly is an amazing child, just as all parents feel about their kids. But, there is definitely something inside of her that is intuitively pushing her forward and allowing her to rise above all that is surrounding her life and our lives everyday. I love you, Brynn. Last night when she was falling asleep she reached out to grab my hand and held it tight until she fell off to sleep. She looked like an angel. I took her hat off for her like I always do and asked God to watch over her. 1/31/2006
Mom's entry 1/26/06We're home from CHOP. Brynn's ANC count was 1328 yesterday! She was able to start the second half of delayed intensification. She did so great. She and I had a long day at the clinic 10-5. She received Zofran and then Cytoxin and ARA-C injection. The Cytoxin is very toxic on the bladder so her urine specific gravity had to be less than 1.0 before she received the medication. The med runs over one hour and then they follow-up with 3 hours of fluid. Then, she received the ARA-C shot on the way out the door. Paige stayed at home with Mom Mom and sounds like she had a really good time playing. Mom Mom came and stayed Tuesday night and stayed with us Wednesday night until Aunt Melanie could get here to stay with Paige today. I gave Brynn a dose of Zofran before she went to bed and she slept straight through - no vomiting. We left for CHOP at 7:00 this morning to be there at 9:00. It was a nightmare drive, total stop and go traffic. Brynn was crying halfway in to the trip that her belly hurt, she threw up once and sat on the travel potty alot of the way. We didn't know what else to do because we couldn't stop. The good news is the lumbar puncture under general anesthesia went soooooooooo well!!!!!!! They left her port accessed from yesterday, so when we got there they only had to flush it and then give her propofol through the IV and she was out - no "scary mask" as Brynn refers to the last experiences she had with general anesthesia. She woke up happy and didn't know everything was over. She also received a 24 hour dose of Zofran and they give her the 2nd ARA-C injection. I have to give the injections here tomorrow and Saturday. The biggest concern right now is watching for her Hgb and platelets to drop - which the ARA-C will cause quickly. We're back at the KOP clinic next Mon, Wed, and Friday to check counts and for chemo. The nurse practitioner yesterday told me that if we're going to have a hospital admission, it will be over the next few weeks because ARA-C can also cause fevers. She said to have bags packed and ready in case. Brynn seems great right now. She's down playing with Paige and Aunt Melanie. I have to apologize because I know there are people I have not acknowledged on this website for helping us. Matt and I cannot express enough our thanks and gratitude to the members of our church - St. Luke Lutheran Church in Devon. The prayers, the meals, visits from Pastor Kane, support of Elizabeth Muir and Christine McClay, and the financial assistance has been overwhelming. We also want to thank and acknowledge our nephew's karate school in New Hope who helped us over Christmas and sent giftcards and money. So many people that we don't know, but have felt the impact of Brynn's leukemia. To Melanie and Enrique - thank you and we love you. Melanie, your phone constant phone calls and words of support are never to be forgotten in my heart. To Matt's entire family and my entire family - thank you from the bottom of our hearts. To Matt, our girls couldn't have a better and more loving father and I couldn't have a more supportive and constant husband who grounds me and keeps me sane and loves me day in and day out. To my sweet girls - I will always cherish this time with you, as difficult as it is. We really are best friends and closer than close can be. I love you with everything I am. God, continue to guide our way and give us strength and fill us with your spirit. Brynn and I got home yesterday and Paige was smiling ear to ear and said, "B-tah (she calls Brynn), I missed you." 1/26/2006
Dad's entry 1/24/06As you get older, time seems to slide on by, they say. This isn’t always true. It wasn’t so long ago, really. It was our first family vacation. We were headed to the beach; the girls had never been to a beach, had never seen an ocean. We packed the bikes, the beach chairs, toys…. we were all very excited, but it began almost as soon as we got there. Brynn started running a fever. We gave her Tylenol for two days, and planned to come home if the fevers didn’t stop. But on the third day they were gone, and we decided that we would stay. It was soon after that she started limping. We figured she had just twisted her ankle in the sand, so we went on with things. We spent the days at the beach, or at the park…the girls had a wonderful time. They sat in their beach chairs and ate lollipops and potato chips. They dug in the sand, they laughed and smiled, and ran from the waves. They rode their bikes and played on the slides and swings. We ate pizza, and went out to dinner. It was a wonderful time, and we took pictures of all of it. The day after we got home Halley noticed there were tiny bumps on the back of Brynn’s head. It was a Thursday. We went to the Doctors. They took some blood samples, and said we’d have some results the following day and some again early the next week. It was Friday, August 26th, early afternoon, when the phone rang. It was one of those moments that become a part of you forever. A moment that stops things, and sends them in a different direction. I knew immediately it was the Doctors office, we had been waiting all day. I was in the family room, sitting on the floor. Halley was on the phone in the kitchen. The girls were playing. I heard Halley use the word “hospital”, and I remember that I started shaking my head in disbelief. She got off the phone, she said the tests showed Brynn’s platelets were low, and that we had to go. We gathered the girls, packed some things, and got in the car. We talked a lot about what may be happening, or what may lie ahead, but looking back, I could never have imagined thinking about all of the things we had just left behind. We arrived at the Emergency Room at CHOP. We went over everything that had been happening, with the nurse, and then a Doctor, and then another Doctor. And we waited. And when the Doctors finally came into our room, they brought a social worker with them. I will never forget that. There was no more speculation. The fact was that our lives had been silently changing for weeks. That silence was over now, and the first day of Brynn’s recovery had arrived. That was almost five months ago. I have learned a great deal in that time. I have learned about myself, about my beliefs, and about my faith in others. I have learned from Brynn, been amazed by her. Her strength and determination are as great as I believed them to be all along. I will never be able to tell her how proud I am; there really are no words. I have learned from Paige how fragile and delicate the balance can be, in the eyes of a child. That a simple smile can be so calming and reassuring. Paige’s presence in our lives cannot be understated. Her spirit drives us, and lightens our hearts. And my dear Halley, your love, and commitment, to me and to Brynn and Paige, is surely the reason we have come so far. There has been no greater comfort, than knowing that Brynn and Paige have you as their mother. You are doing a phenomenal job, and so much of our success on this journey will be due to your limitless love, and unending care. I see how dearly the girls love you, and though that type of love can never be easily defined, it is, in my heart, a reminder of why I will always be in love with you. I want to thank all of you that have helped us. To our families and our friends, to all of the Doctors and Nurses that have cared for Brynn, and loved her, we are forever thankful. To those of you I have never met, from my heart I thank you. To those of you that pray for Brynn, and our family, those prayers are heard. Please continue to keep Brynn in your hearts. She is a beautiful little girl. 1/24/2006
Mom's entry 1/21/06Brynn had a good weekend - we all did. She's still very angry about her hair. We talked about it for awhile on Saturday and she told me she's afraid her leukemia is back because she was on steroids again like she was in the beginning. I reassured her that the doctors are doing everything they can do for her leukemia not to come back. I found a special little bag and put a lock of her hair in it that she's carrying around as a reminder that her hair will come back. She also carries around a picture of she and Paige when she had her hair. It seems to be helping. Brynn sometimes understands too much. Dr. Leahy said she's a 16 year old trapped in a 4 year old's body. We pray that her ANC count is 1000 this week to start the second half of DI. I wonder what they will do if it's not? I'll update later in the week. Appt. at 10:00 on Wed and lumbar puncture scheduled on Thurs. We'll be getting a contact list together for the fund raising event in March for Brynn sponsored by the Christopher Bradley Foundation. We're excited to see all of our friends and meet new friends all for our sweet Brynn. I'm continually so proud of her and find her so beautiful with her little hats on and without her hats on. I just hope the anger goes away a little bit soon. Thank you again to all of our family and friends and CBF for helping us and for your prayers and for those of you that we don't even know that are touched by Brynn. 1/23/2006
Mom's entry 1/19/06Brynn did not receive chemotherapy yesterday. Her ANC was 328 and it needs to be above 1000 before she starts the second half of DI. The good news is that her monocyte count was 30, which is a good indication that the ANC is on the way up. Some kids, they told me yesterday, need that extra week off to let the counts recover from the doxorubicin and vincristine three weeks in a row. I'm not worried, just going to enjoy the week off of no medication. Brynn had a complete break down at the clinic yesterday. I've never ever seen her like that. When Dr. Leahy wanted to go back to the exam room to check her and talk to me, just started screaming no and was hitting me the whole way to the exam room. I've never seen Brynn like that ever. She was so mad and later told me that she's tired of doing this. How can you blame her? So, I think a week off will be good for all of us. She's also still really adjusting to losing her hair. If she wakes up in the middle of the night and her hat is off, she finds it and puts it back on. Thank you everyone for the adorable hats - Nannie is a hat factory and Mom Mom found some really cute ones. Paige is also enjoying them. So, we'll be back at the clinic next Wed. hoping for a good ANC count and then lumbar puncture at CHOP on Thurs. 1/19/2006
Mom's entry 1/16Brynn's hair is all out now. She looks so sweet. She had a tough time Friday night crying and saying she looked silly. We continually tell her how beautiful she looks. She won't go without a hat even when she sleeps. She's doing great. Energy is back, sleeping well, and not eating so much. We all had a good weekend. Mom Mom came to visit on Sunday and brought lots of pretty hats - for Paige too. And she brought me a vanilla latte and Matt a mocha! A long day of chemo on Wed and lumbar puncture scheduled at CHOP on Thursday. That's if Brynn's ANC is above 1000 on Wed. which it should be. We'll soon have picture of Brynn and her song to post on the website. We think about all of our friends and our thoughts are prayers are with you all - Abigaile, Noah, Emily, Gina, Alexandria, Charlie. Noah - we know you'll do great with DI. Please call me anytime! 610-970-5114. 1/16/2006
Mom's entry 1/12Brynn had a good visit on Wednesday to the clinic. Her ANC is up to 728. A good indicator that she should be ready to start the second half of DI next week. She has a long day of chemo on Wed and then down to CHOP on Thursday for a lumbar puncture with general anesthesia and intrathecal methotrexate. She's doing so much better off the steroids. Happier and playing with Paige. Last night was the first night of nonstop sleep I've had in weeks. Brynn's hair is almost all out now. The whole process of it coming out has been heart breaking. I had to cut it the other night because it had huge tangles of hair that had come out already stuck in with her other hair. The more I tried to comb it, the more it pulled out. After I cut it, Brynn was so angry about the way she looked. She's doing better about it. She told me yesterday never to come near her with scissors when her hair comes back in. She's keeping a sense of humor about it which is great. I apologize if reading these entries is a big downer. I just don't know how to be up beat when I feel so down. I'm holding it together for the girls during the day keeping a good front of "normalcy", but most of the time worried and nervous. But, yet thankful for how well Brynn is doing. I know that Brynn is doing well, is going to be fine, all of those things that people tell me, but no one can imagine what the day to day process of getting your child through leukemia treatment is like. Two years, two months of treatment and then no guarantee for the rest of her life. I love her with all my heart and will keep doing what I'm doing. I thank you all for everything!1/13/2006
Mom's entry 1/10This is the last day of steroids!!!!!! Brynn is so happy too. She was up in the middle of the night reading books and just talking away like it was the middle of the day. She was so sweet - I was half asleep trying to keep up my end of the conversation. She finally fell back to sleep after asking over and over if she could have something to eat. Another sleepless night for me between Brynn and Paige waking up and wanting me. Brynn's hair is coming out in clumps. When I talk to her about it and show it to her, she tells me to stop talking about it because it makes her angry. I told her it makes me angry too, but it's only temporary. She said yesterday, "Well, I'll just look like a boy." I assured her she wouldn't that she'll be a beautiful girl no matter what. Her doctors actually can't believe she held on to it this long. Dr. Hogarty said last week that she has very strong hair. :) I just want to say how amazing Matt is being for all of us. He's so supportive and always knows the right thing to say. I miss all of my friends and I'm dying for a vanilla latte from Starbuck's. :) How simple, but would be so wonderful. One month until Brynn's 4th birthday. 1/10/2006
Mom's entry 1/9We took Brynn to the Emergency Room at CHOP on Saturday. I started worrying about her on Friday. She seemed very listless and pale. She took a nap in the afternoon, which she never does and then didn't really want to get off the couch the rest of the day. She was up alot then that night going to the bathroom. On Saturday morning, she tried to eat a little bit (spaghettios this time on steroids) and then really didn't want to get off the couch again. She looked bad - very pale with red rings under her eyes. I spoke with the oncologist at CHOP. He said it was unlikely her Hgb had dropped since Wed, but was possible. He recommended coming in for a CBC. So, we spent the whole day essentially in the E.R. It turned out she was fine, just reacting to three weeks in a row of chemo and the results of feeling like crap during delayed intensification. We felt reassured that she was OK. It's just so hard seeing her like this. She's not doing much at all. Paige keeps asking her what's wrong. She's really not even talking much. I just keep reassuring her that this feeling is only temporary and the doctors are making sure the leukemia doesn't come back with stronger medicines right now. Only 3 more doses of steroids. Her Hgb in the E.R. was 12.7 and her ANC was 350 - all up from Wed. My anxiety level is so high right now. I'm short of breath most of the day. I had terrible dreams Friday night of relapse, so that didn't help how I felt when we all woke up Saturday morning. Thank you God for continuing to heal Brynn and give her strength. In to the clinic on Wed to check counts. No chemo this week! A week off to let her body recover. I hope she'll be up dancing with Paige by the weekend. 1/9/2006
Mom's entry 1/5/06Hard to believe it's 2006. This year will hold better things for all of us, I'm sure. Brynn had her day 14 visit of delayed intensification yesterday. Nannie got to go with us which was so nice and helped Brynn alot. Her ANC is down to 260 - quite a shock from 4,000 last week. Dr. Hogarty said that number was misleading since she was on steroids. She also might be fighting a little bit of a viral infection since Paige has had a cold. No fevers though. Her Hgb and Platelets are remaining stable. She received doxorubicin and vincristine with Zofran yesterday. They also gave her extra fluids again in case she got sick. She did really well again. She looks really wiped out today. Very pale with dark circles under her eyes. We also started another 7 day course of steroids and she is sooo grouchy. She is yelling at Paige constantly and Paige is crying because she doesn't understand what happened to her best friend. I keep telling her Brynn doesn't mean it and it's her medicine making her grouchy. Paige seems to understand. So, this is the kind of day I'm having - no shower, finally got dressed at 1:30. It's OK - doesn't matter. Somehow, this is all teaching me so many life lessons. If we could all just keep in mind what's so important and freeze frame these moments in our mind instead of worrying about the things we do. I hope I can pass this on to everyone not even affected by cancer. Thank you Doug and Deanna for the Giant gift cards you sent us. Thank you Mom for the wonderful visit and little bit of break in the routine as we know it. Back to the clinic next Wednesday only to check counts since her ANC was so low this week. God Bless the little girl who died Christmas morning and who's family sent all of her Christmas gifts into the clinic for the kids to play with. May you all find peace again. 1/5/2006
Mom's entry 12/30Brynn did so much better after chemotherapy this week - no vomiting. She received a 24 hour dose of Zofran in the clinic prior to her Vincristine and Doxorubicin. Came home and she was up playing and eating. I gave her a dose of Zofran and Benadryl before she went to bed and no vomiting! Halleluia! She was up a few times to go to the bathroom and was up at 5:00 (steroid related), but she feels fine today. We (her oncologist and Matt and I) think the sickness is related to the lumbar puncture with conscious sedation and how traumatic the punctures have been. So, we've decided to go back downtown to CHOP for general anesthesia for all her lumbar punctures. We have to do what's best and less traumatic for Brynn. Her ANC count was over 4,000 yesterday! Also steroid related. It will definitely drop this week not being on the steroids. Mom Mom slept here last night in case Brynn got sick. We love having people here with us to help and give extra hugs. It helps so much. We love you all and continue to thank you for your prayers and support. 12/29/2005
Mom's entry 12/27We hope everyone had a wonderful holiday. I've wanted to put an entry in, but haven't had a chance and it's taken me this long to recover from last week. Brynn started delayed intensification on Wednesday. We got to the clinic and after accessing her port, she received IV Morphine and Zofran prior to the lumbar puncture. The lumbar puncture was awful like the last time. They had to stick her three times and by the third time, they had her in the tightest lumbar hold I've ever seen. She was crying so hard and sounded like she was suffocating because her face was pressed so hard against the nurses chest. Matt and I broke down out of desperation and helplessness hearing her and just wanting them to get the stick so she could get her intrathecal methotrexate. Such mixed feelings knowing that it's going to make her sick, but that she needed it. After it was over, her eyes were all swollen, she had petechia under her left eye and petechiae all over her arms where they held her. After that was over, they gave her Vincristine and Doxyrubicin. We were at the clinic for over 5 hours and came home. Brynn was really nauseous and started vomiting around 7:00 which continued through the entire night. I spoke with the oncologist twice through the night and I ended up giving her 2 more doses of Zofran. Right around the 24 hour mark after receiving her meds, the nausea stopped and she was up and about. We went back to the clinic on Friday and Brynn received two injections of aspariginase. This is a really nasty drug that can cause pancreatitis, blood clots in the brain and elsewhere. So, we're keeping a close eye on her. The hardest part right now is Brynn is on a 7 day course of steroids - so her energy level is way down. She had a quiet Christmas, only opened a few gifts. The Christopher Bradley Foundation and my friend Kristi and her family made it possible for my girls to have more than enough gifts. We thank you all and again express our thanks and gratitude over and over. We look forward to giving back someday to a family in need. We also thank all of our friends and family that sent gifts and giftcards - they will help us so much. We go to the clinic again tomorrow for Vincristine and Doxyrubicin, but no lumbar puncture. Brynn's counts were good this week. ANC was almost 2000. Hopefully her count didn't drop too much this week. Her hair hasn't come out yet. We're anticipating that in the next week or so. Dr. Leahy said sometimes it happens almost over night when they're sleeping. Brynn will cope and we will always reassure her what a beautiful brave girl she is. She's making lots of friends at the clinic and seems to be attaching herself to the older kids. We love her so much and continue to be amazed at her strenght. Even when she was so sick this week, she didn't complain one time. I'll post another entry this week as soon as I can.12/27/2005
Mom's entry 12/15Thank you to my friends in WPS at Merck - Teams 1, 4 & 6 for the wonderful gift you sent us. Again, you amaze us and everyone's generosity is so much appreciated. I look forward to the day that I can give back to another family in need. And we also thank the Christopher Bradley Foundation again and again for their continued support of our family. Brynn continues to do well. Less than a week until delayed intensification. On 12/21, Brynn will have another lumbar puncture with methothrexate, she'll receive Vincristine and Doxorubicin. Another round of steroids. We will not forget the Zofran next week. Please let them get the lumbar puncture on the first stick. We continue to pray and thank about our friends - Alexandria, Noah, Anthony, Abigaile, Charlie, and all children fighting and beating cancer. 12/15/2005
Mom's entry 12/12Brynn had an EKG and Echo this morning preparing for delayed intensification. She did great. Next appointment is 12/21 - a long day ahead of us that day. 12/12/2005
Mom's entry 12/5I'm sending a very special to the Christopher Bradley Foundation that is helping us. You are all very special people. God bless you. We had a good weekend. My parents came to visit on Sunday and the girls were thrilled to see Nannie and Pappy. And they also had fun in the snow. Brynn's doing great. Two 1/2 weeks until delayed intensification. It will be OK. Brynn will do great. That is my mantra. And we'll get through it. No appointments this week. 12/5/2005
Mom's entry 11/30Brynn came off the steroids Monday morning and is acting more like herself. I don't remember her being so tired last month. I guess she could react differently everytime she takes them. We're having a good week so far. It will be nice to be home this month before Delayed Intensification starts on 12/21. People have suggested having Christmas earlier this year, but we'll have Christmas as normal and if Brynn doesn't feel good this year, then we'll remember it that way and there's always next year. I think about all our friends from the hospital constantly and hope their doing well - Abigaile, Charlie, Noah, Alexandria, and Frannie. We pray that you continue to heal and feel well. 11/30/2005
Mom's entry 11/29I haven't made an entry for awhile. We had a traumatic visit to the clinic last week, so that threw us all of for a few days. They had to stick Brynn 3 times for her lumbar puncture. She did fine and was still, crying alot, but I think she did really great. It was the Nurse Practitioner that finally got it on the third stick and she was able to get her methotrexate. Brynn's counts were fine. Hgb 11.3, WBC 2.5, Platelets 350,000, ANC 1024. She got Vincristine before we left and then we headed home. Within 5 minutes of getting home, Brynn started throwing up and continued to throw up the rest of the day, despite me trying to give her oral Zofran. I was on the phone with the clinic all day telling them that she wasn't going to stop throwing up. She never does when she gets in the cycle. She needed IV Zofran which she usually gets with her chemotherapy, but somehow an oversight was made and they never gave it to her. So, the evening before Thanksgiving, we had to go back to the clinic for rehydration because of her vomiting all day, IV Zofran and IV dexamethasone because she couldn't get her oral dose that evening. It was an awful day for all of us. Thank goodness Matt took the day off because I wouldn't have been able to do it by myself. Poor poor Brynn. My heart just went out to her. She had vomit coming out her nose. How are we ever going to do this? Why is this happening? These questions continue constantly in my mind and the worrying never never ends. I'm frightened all the time it seems. We had a very quiet Thanksgiving. We had a wonderful family from the CFB Foundation that brought us a Thanksgiving meal. It was delicious and helped to make our day so much nicer. Brynn's on a five day course of steroids right now and seems to be making her really tired. I don't remember that last month with the burst of steroids. Our next appointment is 12/21 to start Delayed Intensification. Somewhere in between now and then Brynn needs to have an EKG and an echocardiogram before she starts doxorubicin which can cause heart problems, so they want to know what her baseline is. Thank you again to all of you out there that are helping us. We hope you all had a nice Thanksgiving. 11/28/2005
Mom's entry 11/23Brynn has her first clinic visit tomorrow in a month. It's been so strange not going or knowing what her ANC count has been. She's scheduled for a lumbar puncture and chemotherapy. I pray it goes well. She hasn't had conscious sedation at the clinic yet - has always had general anesthesia down at CHOP. I'll talk to her today and explain what is going to happen. She knows she gets medicine in her back, so if I explain that that's what Dr. Leahy is going to do and if she holds still and doesn't cry then she won't get the "mask" down at the hospital. Hard to believe Thanksgiving is Thursday. We're staying home. I can't bring myself to making a big dinner. We'll skip it this year and just enjoy being home together. We have so many blessings this year and are thankful for all the positives with Brynn's Leukemia. I pray for a good visit tomorrow.11/22/2005
Mom's entry 11/15It's a rainy day outside and we're inside. Brynn is doing well. She recovered from her cold and no fever! It's been so strange to not go to the oncologist every week. This break has been nice. We go next wednesday right before Thanksgiving for a lumbar puncture and chemotherapy. I hope she'll do OK with the conscious sedation. We still haven't done that yet at King of Prussia clinic. Matt is taking the day off to go with us. I'm dealing with my own anxiety right now - seems to really have escalated into being almost uncontrollable. Just this fear of the unknown is getting the better of me, plus the daily stress of giving medication, financial concerns, and living with leukemia every day. But, the positives are there so much. Brynn is feeling well and strong. I'm out of work now - taking a long term leave of absence from Merck. They're being very understanding and it's a huge weight lifted from me that I don't have to go back for a long time and can take care of Brynn. Thank you to all of you again who are helping us and for your continued prayers.11/15/2005
Mom's entry 11/7Brynn has had a cold for about a week now. I'm so nervous - waiting for it to get worse or get better. She was checked at the clinic on Friday, ears and throat were fine, lungs sounded good. They didn't want to check her ANC unless she had a fever, which she hasn't. Paige is finally just about over her cold and that took about 10 days. Brynn was a couple days behind her in getting it. I'm sure everything will be fine, even if we have to go to the hospital. I went to work one day last week and it was too much. I don't think I'm going to be able to go back, at least not for a long time. Maybe in the Spring. I just need to be here for Brynn. We're facing a round time in a couple months and it should be me here taking care of her. Everyone seems very understanding. It will be very rough for us, but we'll do what we have to do. This is something we face every single day and it doesn't leave my thought process usually for more than a couple minutes. The girls are now pushing to type at the computer. Not much time for old Mom. :)11/7/2005
Mom's entry 11/1I started work today. It's been an emotionally draining day so far being back to a job that I had just started three weeks before Brynn's diagnosis and worrying about the girls. Brynn has a cold right now and Matt said she really cryed when he left. I checked in once and Lori said they were doing fine. I just have so many things I'm worried about and feel so drained. We went to the park yesterday. It was so beautiful outside and the girls had so much fun. I had talked to Dr. Leahy in the morning to tell them she had a cold. No reason to see her unless she gets a fever. When I got off the phone and asked Brynn if she wanted to go to the park, she said, "you mean Dr. Leahy said I could go to the park?" Why have we been depriving her and Paige of these simple pleasures that mean the world to them? Because I'm so scared of her picking something up somewhere and ending up back in the hospital. But, I obviously can't protect her from it since she ended up with a cold and we haven't been anywhere but the clinic. I pray for our strength to get through this next phase and adjustment with me going back to work. I miss them.11/1/2005
Mom's entry 10/26We had clinic visit at King of Prussia today. Everything went really well. Brynn's ANC count wa 1500, Hgb. 10, Platelets 350,000. So, she was able to move in to the next phase of her therapy (interim maintenance). They accessed her port for the first time today. It seemed sore for her and she was really nervous, but she did so great. She was really crying laying on the table and she kept saying, "only one pinch, only one pinch." She also kept saying she needed her Mama and I was there the whole time holding her while she was laying down. But, she did great and they gave her Vincristine and we were on our way after about 2 hours. Paige did great too. It was amazing, we saw 2 other girls that were in the hospital when we were. They seems to be doing well. I love going there compared to the clinic in the city. It's so much nicer and they seem to really love Brynn. They all seem to just love what they do so much. We started a five day stretch of steroids today. I'm so nervous we're going to see the side effects that we did that first month. But, Dr. Leahy said we really shouldn't. If we do, it's mostly behavioral. And another new medication starting today. It's so much to keep track of. Brynn did so well, everyone would be so proud of her. I picked up pictures today that we had taken at the beach. It was hard to look at them without thinking that she had leukemia there and we didn't even know it yet. It's hard to have such mixed emotions and memories of our first vacation together. 10/26/2005
Mom's entry 10/25Lori started yesterday. The girls had alot of fun. I didn't worry the whole time I was out. I definitely feel that Lori is a great fit for us and even though I feel nervous to start back to work and leave Brynn, I know she'll be OK and safe with Lori, Paige too. We go to the clinic tomorrow. I spoke with Dr. Leahy yesterday to clarify if Brynn needed a lumbar puncture for her visit this week and she said that we don't. I'm so happy. This is the first week without a lumbar puncture in probably 6 weeks. They'll acess her port for the first time, so I hope this won't be traumatic for Brynn. The sites both look good and Brynn doesn't seem bothered at all with it. So, I'm not really asking why anymore about leukemia and Brynn. I don't feel angry anymore. I'm sure these feelings will come back, but I'm at a point where it's moving forward and getting us through this. I've always felt that way, but I have a kind of peace with it now. Brynn's amazing and the bravest kid I've ever been around. She has faced every scary situation head on and continues to have a happy outlook on life. It's better that she doesn't understand the seriousness of what she has. Someday, when she's a grown woman, I'll tell her about all of this and how proud I am of her. I do that now, but someday when she's able to really understand all of this, I want her to know how brave she was. I love her so much.10/25/2005
Mom's entry 10/21Work is getting closer and I'm starting to panic a little bit about it. I wish I could take these six months off of her initial treatment phases to be here with her without worrying about losing my job. I just keep thinking that older kids in this phase are going back to school, so for Brynn to be here with our Nanny - she will be safe. I took Brynn's first dressing off of her neck this morning. The site looks good. The other dressing will stay on until we go to the clinic again on Wednesday. It's raining today and we feel stuck inside. The fresh air always does us good. Numbers this week: ANC 2264, Hgb 10.4, Platelets 577,000. Dr. Leahy said I need to stop living by the numbers so much, but I don't know how to do that right now when so much depends on what they are. I guess it will get easier? Thank you Beth, for your kind words. It was so good to talk to you today. You truly have a kind heart.10/21/2005
Mom's entry 10/20Brynn had her port yesterday. We had to be at CHOP at 7:00 a.m. There was some confusion with the radiology physician with general anesthesia vs. sedation. Brynn finally was taken around 10:30. They did the port first and then another lumbar puncture with methotrexate. She did fine, but woke up very unhappy. We made it home around 3:00. Her neck is sore, but she seems to be managing fine. This should make it so much better for her to receive all of her treatments without being stuck over and over to find an IV. Her poor little hands look so beat up. Brynn is talking about everything so much more. The other night, out of the blue, she said she thought she saw blood hanging from her IV. When I told our Oncologist that on Tuesday, she said she never heard in her 20 year career, a 3 year old say anything so intuitive about their treatment. We made so many mistakes not telling Brynn alot of what was going on. No wonder she acted so angry and confused. But, she now understands that something is really wrong with her blood, but that it's getting better. But, it will mean alot of medicine, alot of pinches, and alot of doctor visits for a long time. Matt and I are holding up pretty well. Just drained in all aspects. We're so thankful for all the support we're receiving. It's amazing. I'm supposed to start back to work on November 1. Our Nanny starts next week to get used to the girls and them her. I'm sure everything will work out fine. Brynn's entering a rest phase of her chemotherapy before she enters delayed intensification in mid December. This phase will most likely be very rough for all of us. Her bone marrow will be knocked out again and she'll have no immune system, essentially. Dr. Leahy said we should have a decent Christmas, but she most likely won't feel too well for her 4th birthday. Then, another rest phase after D.I. before we start maintenance in the spring. I know our family is going to be OK. I know it in my heart.10/20/2005
Mom's entry 10/14My home email is halleybakerhenry@hotmail.com I'm trying to check email every couple days. I pray that everything goes well for our friend Abigaile for her bone marrow transplant. It was good to see her too at the clinic. I think and pray for all this kids that were with us on the Oncology floor during our admission. We will definitely go up and visit next week. Brynn's doing well today. I was sad this morning, but hanging in there for the girls. 10/14/2005
Mom's entry 10/13It's been kind of a long week. Our clinic visit on Monday didn't go so well - couldn't get an IV access. So frustrated because we were going to try conscious sedation. So, we had to go to CHOP this morning for her weekly lumbar puncture under general anesthesia. Everything went fine with the procedure. I just have questions because her ANC count has dropped every week, down to 1200 this week. Her Hgb is 8.8. Why am I so scared of a relapse? The other issue today was the anesthesiologist had to stick her 4 times to get her IV in. So, she's getting a port next week. I was so hoping to avoid one, but it will be OK. It will help Brynn so she doesn't get so many sticks. Just a source for infection. I love her so much. She has such a way of making me smile whenever I'm worried.10/14/2005
Mom's entry 10/6I'm feeling overwhelmed today. Seems to be so many decisions to make and so much pressure to make the right onces. Brynn's not as moody today. She slept in her bed for the first time and did great. Sometimes, I wonder if God has given me this awful test to see what I will do with all of this. Please help me find my way, find our way. Paige is sleeping. Brynn is reading her princess books. 10/11/2005
Mom's entry 10/5Brynn's been off the steroids now for just over a week now. It's already such a difference. She's not up through the night eating, she's breathing better because her distended belly is down, her face doesn't have so much of the cushing appearance, and she's not limping anymore. She's still really moody and taking so much of it out on Paige. I feel so bad for both of them - such a huge adjustment and I understand how Brynn is angry. I've been talking to her about the anger and it seems to help. Brynn had lumbar puncture #2 for the month. I think she has 3 more to go in a row. Next week we're going to try conscious sedation,instead of general anesthesia. Brynn continues to amaze me, never complains about taking the medicine, never questions anything. I lover her sweet gentle heart. And I know as much as she says she wants Paige to go away - she really is the best medicine for her. And I can see Paige just light up with any hint of love she feels from Brynn - every smile, hug or kiss. 10/11/2005
Mom's entry 9/28It's been just over one month since we learned of Brynn's leukemia. Somedays it still doesn't even seem possible. We're living this now everyday, but yet it still seems like a dream at times. I find myself going through the motions, and giving my family whatever they need, but I still don't want this to be true. I'm still questioning and wondering why we've been dealt this, why my sweet girl is not herself and why our lives seem so crazy. But, through it all, I think we're doing great. So many people are helping and supporting us. We are going to do this and we will be alright. My Mom had to leave yesterday. We were all sad to see her go. We would have had a really tough time without her. I know it was hard for her to leave too. Brynn had her day 28 bone marrow biopsy and lumbar puncture. The oncologist gave us wonderful news that Brynn is in full remission. Thank you God. No more leukemia and she's making normal blood cells. We all felt this huge weight lifted from us. I even think Brynn sensed the magnitude of what we were feeling. Monday was a much lighter and happier day for all of us. I love you Brynn and I love my fmaily. I will do everything for them.10/5/2005
Mom's entry 9/23It's been a week now since we brought you home. It's been a really really rough week. The steroid's are so hard for you and I'm worrying all the time. Tuesday was our first clinic day. We got great news that your ANC count was 2,184. I was completely shocked. I am so completely sleep deprived at this point. Having a rough time seeing Brynn like this. I feel sad, angry, tired, scared, and bitter. Our Pastor is coming to visit on Sunday. Please God help us. More of Brynn's hair is coming out. I tried to talk to her about it today and she got upset. She'll understand, I know she will. We head to CHOP again on Monday for a bone marrow bipsy and lumbar puncture. Brynn is limping again on her right leg sometimes. There's always that thought of relapse, but I refuse to think that way. It's most likely from muscle weakness due to the steroids and the extra weight she's carring. I love you, my sweet girl.10/5/2005
Dad's_EntryBrynn is sleeping beside me, as peaceful as can be. It’s just over a week now since we arrived, easily the longest week of my life. I’m amazed at how well she is doing, at how well she does, hour by hour. My heart just cries for her to be free of all of this, to wake up from this nightmare. But as disbelief and shock have slowly turned into reality, I see the strength and courage I always knew Brynn had. All of the disbelief has turned into the true belief that she will win this battle, and cure herself of this disease. I know that there are many rough days ahead, but none of them bigger than the love that exists for this girl. We will all find our way through this, hour by hour and day by day. I thank God for so many of our blessings this week, from her diagnosis (ALL) to her tests results, to how well she is responding to her therapy. I thank God for our families and all of the support we have received from them and from our friends. I can not wait for the day that we get to take you home and see you play in the house with Paige and sleep in your own bed. I love you sweet little Brynn, with all of my heart.9/3/2005
Mom's_EntryToday we have been admitted to the hospitalwith Brynn and have been given the diagnosis of Leukemia! I can not even say the word right now – easier for me to write it. Brynn will have a bone marrow biopsy and lumbar puncture on Monday to see which type of Leukemia – ALL or AML. I’m so scared. Please God help us. Please don’t take my girl from me. I love her so much! Platelets dropping 70,000 – 59,000 – 46,000 White Blood Count dropping 39,000 – 30,000 Hemoglobin: 11 much dearest Brynn. We pray everyday for your speedy recovery!8/26/2005