Ashton is doing so good right now. He is really coming out of the radiation fog he had been in. The doctors say that it should be completely worn off by July and you can really tell he is changing. He is back to his old cheerful and happy self. No more yelling and acting out. He has also been wanting to walk lately. He took about 7 steps on his own the other night. He was walking at the end of radiation, but he got knocked down from the sleeping syndrome the radiation caused and then he started chemo which kept him in bed alot. Now that he is feeling better he wants to do so much more.
He had a hearing test done yesterday which shows a teeny bit more hearing loss. Nothing major but the doctors want to take his Cisplatin down to a 50% dose. It is great that he is getting the 4th dose of that, which is what they were hoping to get in to him without a great amount of hearing loss. I'm not sure if he will be doing a 5th course of that one. He still will have two others to do regardless...thats why each time he has chemo we are in the hospital for 3 nights.
He was set to start chemo today, but after his blood draw yesterday, they decided to wait. His patelet counts aren't what they want them to be and they hope for them to rise by Monday. This way they won't have to lessen the dose of Cyclophosphomide.
So thats where we are at right now. We have scheduled a trip to Disneyland in October. We really need something to look forward to. I had a really hard day last week when I saw a story in our local paper about a boy who passed away from Medulloblastoma. Its amazing how my day can change in an instant. The day got better when Ashton's dr. called with the good news about his lumbar puncture being clear. I told her I was glad for good news and she asked what was wrong. I began to cry and told her about this boy, who she ended up knowing. She told me to remember that each case is different and that there are more good outcomes then bad. She reminded me that we only hear about the bad outcomes. I try to remind myself that each day.
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So glad to hear that Ashton is doing so well. Hope round 4 goes well for him. Keeping you all in my prayers. My nephew is starting round 3 next week. He has just started intensive rehab in a very well respected facility and his parents are really happy with the results already. Sending positive thoughts your way.
Best regards
Karen
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