A day of transfusions.

We went up to LPCH yesterday for Ashtons second dose of Vincristine. He wasn't scheduled to have his blood drawn until today-Thursday-but he had been really sleepy and pale. Tuesday, on his birthday, he was in such a deep sleep I couldn't wake him up. Needless to say that was really scary and caused flashbacks to the day we found out about his tumor and he was in a coma. He did wake up when Carter came in and tickled him, I didn't see it, I was in a panic in the other room calling his dr. But everything was ok, only the dr. thought he should have his blood checked the next day instead of waiting. Good thing because his white count is zero, and he needed a red blood transfusion AND a platelet transfusion. We were up there all day. It does seem to have done the trick, Ashton is happy and playing right now. I am so worried he will get a fever though....I don't want to have to be in the hospital again, although, if that happens, I will just go with the flow--of course!

So, before his appointment, his dr. met us to talk about the hearing test results from the day before. She was concerned, more then I thought she would be. She said we had three choices, 1. go ahead with the normal dose of chemo next time, which his protocol says is ok to do only she and the team of dr.s are more conservative about this. Her suggestion was 2. lower the dose of Cisplatin because it will definitely cause him more loss next time... a lower dose would not be as harmful. Or 3. Stop the Cisplatin all together. I really don't want to do that. I want him to have as much chemo as he can tolerate...I wouldn't be able to live with myself if I stopped him and the cancer came back. So, we decided then and there to go with number 2, and just cut the dose back. It was really surprising to me that this hearing loss happened so fast and she was concerned, but she did say it was expected and this was normal. They want to make sure he doesn't loose the hearing he needs for his word development. This is just all so scary, but necessary. He is feeling good today and doesn't seem to be nauseated, which is such a relief!

We have four days off from the hospital, yeah! That is unless he gets a fever. I feel like we are on vacation! :)

Yesterday, I asked the dr. about the chances of this tumor recurring. She said it was the same as the chances of long term sucess, which is 40-60% I was shocked! I thought they said 65-75% cure rate and I had been thinking that all along!! My spirits were down immediately after that, but she told me once again that there was no reason to think he wasn't going to be fine and those are just numbers. Still, I dwell on stuff like that...I want answers and I know there is really no way to know what the future holds. It sort of brought me back down to reality...in the back of my mind I am always thinking that we are at this place in life just temporarily and that things are going to be just fine in a few months. I guess its some sort of denial. Funny how I can start to take things for granted again. I really thought that could never happen. Its healthy for me to think positive though, I just can't imagine anything else. But I do need to remember that each day is precious that he is here, that all the kids are here.

I should mention that those percentages above are not children who are in the study that Ashton is in. He is the first at Stanford. They don't know the numbers for kids on his protocol. Lets all hope and pray that they are better!