 Update - Friday, October 12, 2007 7:21 PM
Journal
October 13, 2007
Last time I updated was around July 4th, a lot has happened since then! We had a wonderful summer. Complete with a trip to St. Louis, the beach and lots of fun with friends and family! Summer never seems to be quite long enough.
Madison started back to school August 27th to begin her second grade year. This year her teacher is Mrs. Allison Godwin. She is a wonderful teacher and has in fact had teacher of the year a couple of times. We were happy that she yet again got a great teacher. We’ve been pretty lucky in that department.
We had a slumber party for Madison’s 7th birthday around mid-September. A great time was had by all 15 girls in attendance. Yeah, you read it right, 15 girls! They were all really good, no-one fought, no-one cried, and no-one went home. By my account, I’d call that a success! Also in September, the 24th to be exact marked the four year anniversary of Madison’s diagnosis of Leukemia.
Madison has been doing her regular follow ups at Duke which are currently bi-monthly now. She went in August and again the first week in October. All her blood-work has been looking great.
When Madison finished two and half years of Chemotherapy in January 2006 Duke told us that she should be back to a normal kid her age within a year or so. Well this coming January will mark two years off treatment and she definitely has very decreased energy levels compared to other children her age. They also said that they thought that her balance and other equilibrium issues that we have seen would go back to a normal range. The balance issues have been related to a drug named Vincristine and many spinal taps throughout treatment, we’ve been told.
Anyway… in August I ask the Dr. that we saw that day when he thought we could expect her to get back to a more normal range. He responded by saying “well Madison did present with a mass and Madison was a high risk case”, he highlighted a few other facts that made her a higher risk and then finished by saying that because of all those factors that she received more of the “culprit” drug than what other traditional Leukemia kids get. Therefore, he said all that to say that she may never get back to normal. Although we hope that won’t be the case, it seems like a small price to pay! However, when he was highlighting all her risk factors made me feel scared suddenly again. It’s was weird how someone saying things that you are fully aware of make your mind go in bad places again.
Each year Madison has cognitive testing at Duke to measure if she is experiencing any cognitive late effects from chemotherapy. When she was diagnosed she tested in the high superior range for IQ. This was a great thing because it meant that if she did ever experience some of the late effects that she would likely be average as opposed to starting average and going to below average. Over the last two years she has gone from the high superior range to an average range. Duke thinks that this is where she will stay at this point. However, this summer when she tested she had a marked decline in the time that it takes her to process things. Duke has proposed that Madison should have an IEP at her school under the other health impairment category. We have been working with the school to get this done. Specifically, they want her to get physical therapy at school, & have shorter homework assignments that focus on the quality not the quantity. They want her to have at least 50% more time on tests and a hand full of other things. I’m really not sure that we feel real good about doing this. Specifically, I am beginning to wonder whether or not the school system as we know it will be able to give Madison what she needs to thrive and do well with out major frustrations. We’re only in second grade, we have a long way to go. I’ll keep you posted on how this works out for us.
Madison has been falling quite a bit. We’ve really been contributing her falls to “Vincristine” and her balance issues. However, since school has started she has fallen twice in her class, once hitting her head on her teacher’s desk and she’s fallen twice in gym hitting her face one time and her head once on the gym floor. Last week, she fell five times that we were aware of. Although I still can’t help but think that it is related to “late effects” from chemotherapy I talked to Duke about it. Duke feels that given Madison’s history that a cranial MRI is necessary. They have scheduled this for October 19th. I don’t think they are going to see anything and obviously hope that is the case. Say a little prayer about that for us.
I’ve recently heard about therapeutic riding lessons for people with disabilities. I understand that they have been extremely helpful in kids with balance/equilibrium issues and children that have mild cerebral palsy. We are going to give it a try and see if this helps. It’s said to be an activity that really helps build their confidence too. When her MRI comes back good I imagine the next step will possibly be taking her to a Podiatrist and have some inserts made for her shoes. I guess time will tell.
Please continue to pray for Sherilyn Adams. She has incurable Leukemia and is at home taking one day at a time. Some days are good and some not so much. Please pray for her and her whole family.
You can follow her at her caringbridge site www.caringbridge.org/nc/sherilyn
Also please add a boy by the name of Michael Butler to your prayer list. He was diagnosed with Ewing Sarcoma back in 2003 or 2004 and about a month ago they found out that his cancer is back only this time it is Osteo Sarcoma. He is from the Midway community which is close to us. I don’t have a website for him yet.
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