Well we will call this past two weeks and the many weeks to follow Phase III. It seems more difficult that Phase I and II – because the doctors don’t know what is wrong. At first they were sure it was the broken hormone chains they have been waiting for to show up problems, which can all be fixed with life time medications and that time will come. But for now her blood work is normal, yah, but it does not explain why her symptoms are worsening. She has no appetite, drags herself through each day and wakes up many times all night long. They now think it could be Somnolence Syndrome which occurs 3 to 12 weeks after the end of cranial radiation treatments (it has been 8 for Andrea). Or it could be unresolved emotions she needs to work through about all she has been through in the past 6 months – so we are arranging a session with a professional at U of M that talks with children that have had medical traumas. Or it could be school work stress, because she was not experiencing sleepless nights or fatigue until school started and we all know how much she loves and puts into her school work to maintain A’s and she is trying to keep up with a full load. Which by the way she will be inducted into the NHS on the 26th and is very excited. The doctors say her body has been through alot and it will take alot for it to heal properly. They want her stress reduced/eliminated, worried that she could bring on seizures. So that is where we are at, she has missed 3 days of school this week – and now has more school work and stress to worry about. I have pulled her from her CMACB practices and weekend horse shows – with out a complaint from her, so I know she is tired. Next Ann Arbor appt will still be 10-26-09, unless they have us come down again for another unplanned appt. She will have a 6:10 am MRI, 9:10 Neuro Radiation Oncologist and 10:15 Neuro appt. Will post again then.
Archive for October, 2009
October 1st
Categories: Andrea | October 2nd, 2009 | by diane | no comments
Well, its been a month already – time sure does go faster when at home with more to do than we have hours. Andrea has been doing ok, her energy level and appetite have decreased even more sense school has started. She is doing real well with school work, just keeping up with it has been hard to do. She misses most Mondays and Wednesdays because she has to catch up on sleep, so that doesn’t help either. Called endocrinologist Tuesday to tell them about her worsened symptoms and they saw her Wednesday. As we had been told prior to radiation beginning – her putotary gland took 54 grey of radiation and to avoid damage you cannot go over 18 grey. Therefore she has some hormone chains that are showing up broken and they will run tests this Wednesday 7:00 am to find out which ones are broken and will give her meds for it. Then maybe she can sleep alittle less and enjoy Marching Band, school, community band and her horse and dog alittle more. She is currently taking a nap between school getting out and homecoming football game beginning tonite – so she can make it past 8:00pm. Then Saturday she will be at the school by 6:00am to compete in a marching band comp in cedar springs, come home take a nap and then attend the homecoming dance. Sunday she was going to do a horse show, but has decided she will most likely be too tired, has alot of homework and would really like to cheer her 4 H club friends in midland for e team regional comp. That is about all for now – will keep you posted on how the tests turn out next week. Thanks for checking in.