 Update - Wednesday, December 5, 2007 10:21 AM
Journal
December 5, 2007
First I would like to say thank you to all of you that prayed for the Adams family, specifically Sherilyn. Sherilyn got her wings and her wish to go to heaven on November 14, 2007. Sherilyn suffered through a four year battle with Leukemia. During that time she was diagnosed and subsequently relapsed twice. Sherilyn was a brave and beautiful girl whose smile will remain in my heart forever. Please continue to lift this precious family up. Sherilyn’s sister Veronica is currently in remission from Leukemia that was diagnosed September 2006. This family has been through it! Their website is www.caringbridge.org/nc/sherilyn.
The Christmas season is upon us once again! It always amazes me how quickly it seems to sneak up on us. We had a wonderful Thanksgiving full of lots of great food and a fun trip to the beach for a few days.
Madison had the MRI of her head and for those of you that didn’t see the previous journal it was normal. We’ve been trying to get down to the bottom of why she seems to be falling so much. Since the beginning of September until her Neurology appointment November 19th she has fallen approximately 24 times. These falls have been being recorded by both the school and us. Unfortunately, for whatever reason she doesn’t seem to be catching herself or bracing the fall and has hit her head and face several times.
She has been taken out of gym until we can find more answers and gym has been replaced with physical therapy. She is also taking therapeutic riding lessons. She really seems to love this. Horseback riding has been proven to be effective in children that have mild cerebral palsy & specifically has helped with balance issues that they sometimes have. Since Madison seems to have balance issues we though it may also help her.
We went to her neurology appointment on the 19th and left not really knowing much more than what we did before. Their findings were that Madison doesn’t appear to have any reflexes in her arms or legs. They think that this could possibly from the “Vincristine” that she received as a form of Chemo while on treatment. While this theory makes sense for not having reflexes it doesn’t necessarily provide a reason for her increased number of falls. Falling and losing your reflexes is not really a listed side effect of the drug and is definitely not a listed side effect for a child that is two years post treatment. This week I sent an extensive e-mail back to the neurologist asking many questions that weren’t answered at our appointment. Specifically, what our next steps are and how do her headaches and falls tie together. Really, I am full of many, many, questions that would be far too long to list. The neurologist is supposed to be back in on Wednesday December 5th and I am hoping to get a response from him soon.
Madison continues to have headaches that seem to be daily and they are bothersome but definitely not debilitating. She has continued to fall but it doesn’t seem to be any better or any worse than it was a month ago. We started logging the falls September 1st after realizing that over the recent proceeding weeks it seemed that she had fallen a lot.
Madison was seen by Hem/Onc yesterday for which her blood counts looked beautiful. She also had a echocardiogram which is routine every couple of years for people who have had the drugs that she has had and radiation. Her echo seemed to be fine as well. It was suggested that she have a follow up with a cardiologist sometime….but it isn’t scheduled and it really isn’t of paramount importance at this time.
Madi’s oncologist assured us that she would be getting with the neurologist in an effort to direct us where we go from here. In the meantime until they have more collaborative answers she said that if Madi continues to fall,if the falls increase, if her headaches become more frequent or severe, if she has a fever or begins vomiting, or begins having night sweats that they will want to do a Spinal tap and possibly a bone marrow test. This test would be done to rule out sneaky leukemic cells hanging out in one of those two areas. Ideally a child’s lab work would be off to show that there was a problem somewhere. However, many times a child’s lab work is great but their bone marrow or spinal fluid reveals otherwise. That is why they call it sneaky. I don’t know what to think, we just want to know why she’s falling so much and we want to fix it so it happens less.
Please pray for Madi, for her headaches to lessen in frequency and for her strength and balance to get better. Pray that God will give the doctors the wisdom necessary to figure out what’s going on with Madi and point us in the right direction on helping her through it. Madison underwent a very intense regimen of chemotherapy for two and half years. Realistically, those very same drugs that have allowed her to be alive and with us today could also very well be the reason for some of the problems that she is experiencing right now.
Thank you for continuing to follow Madi through her journey. Our appointment on Monday marked two years of being off treatment. This means that we have two years down into our five for her to be considered “cured”. We have come a very long way and we are very grateful for this. Each passing year that goes by without re-occurrence improves her chances of long term survival. The further out from treatment a person gets the less likely they are to relapse. This is a beautiful thing!
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