Holy Relief Bat Man
We got started on delayed intensification (the last hard part of the hard part)cold and all.
Eliot had his spinal tap first. He did great during the spinal tap and came out of the anesthesia just fine. He got a little nervous going to sleep and Aron was right there singing to him. It was really quite touching in a beautiful way.
They checked his testicles today because that can be an area where a re-lapse shows itself. All looked well today.
They also brought him some Thomas the train trains that he loved so much that he cried and said he didn't want to leave the sedation center when it was time to go to the clinic.
We were blessed by a surprise visit from our friend Howard at the clinic. He got to be there when we heard the wonderful news that the horrible drug with the heart side effects has more side effects the more you take of it.
They try to keep kids Eliot's age under 450 mL of doxorubicin. Eliot will receive in all total 75 mL of that drug.
Wow. Wow. I feel so relieved. So crazy ass relieved.
There are of course still risks. And its great news.
We also learned that another drug I was worried about (because we have to give it to him 6 times at home - s c a r y) can be given through a port access which they'll just leave in.
Whew.
I thought we'd have to access his port or some crazy thing.
Eliot is upstairs in his bed. I'm a little nervous that I'll go up there in a while to get him from his nap and he will have grown an arm out of his forehead.
He still has 3 more weeks of steroids. They said he probably won't sleep well tonight because we had to double the dosage up since he wasn't able to take any this morning.
Still. He is alive. His heart will most likely be absolutely fine. Someday if he wants he can probably be on the soccer team.
I've always said with his two athletic parents and one of them being a bit hmmm.... how should I say it.... pathological in his love for sports Eliot will probably be interested in things like playing the violin or the piccolo or being on the chess team.
Either way. He'll have a nice healthy heart for those gruelling chess tournaments.
Eliot had his spinal tap first. He did great during the spinal tap and came out of the anesthesia just fine. He got a little nervous going to sleep and Aron was right there singing to him. It was really quite touching in a beautiful way.
They checked his testicles today because that can be an area where a re-lapse shows itself. All looked well today.
They also brought him some Thomas the train trains that he loved so much that he cried and said he didn't want to leave the sedation center when it was time to go to the clinic.
We were blessed by a surprise visit from our friend Howard at the clinic. He got to be there when we heard the wonderful news that the horrible drug with the heart side effects has more side effects the more you take of it.
They try to keep kids Eliot's age under 450 mL of doxorubicin. Eliot will receive in all total 75 mL of that drug.
Wow. Wow. I feel so relieved. So crazy ass relieved.
There are of course still risks. And its great news.
We also learned that another drug I was worried about (because we have to give it to him 6 times at home - s c a r y) can be given through a port access which they'll just leave in.
Whew.
I thought we'd have to access his port or some crazy thing.
Eliot is upstairs in his bed. I'm a little nervous that I'll go up there in a while to get him from his nap and he will have grown an arm out of his forehead.
He still has 3 more weeks of steroids. They said he probably won't sleep well tonight because we had to double the dosage up since he wasn't able to take any this morning.
Still. He is alive. His heart will most likely be absolutely fine. Someday if he wants he can probably be on the soccer team.
I've always said with his two athletic parents and one of them being a bit hmmm.... how should I say it.... pathological in his love for sports Eliot will probably be interested in things like playing the violin or the piccolo or being on the chess team.
Either way. He'll have a nice healthy heart for those gruelling chess tournaments.
posted by Sara at 2:42 PM
5 Comments:
So, so glad to hear that Eliot's heart will be strong for all the piccolo playing and chess matches and soccer games too in his future. Your heart is so strong too, Sara, in all the ways needed to be Eliot's mom through this. I have this great vision of you sitting in a school auditorium listening to Eliot the piccolo player! And cursing the traffic as you drive him across town in rush hour to soccer practice.
How is little crabapple Naomi holding up with her cold this week?
Lots of prayers for all of you in these weeks--
That is great news Sara! Eliot is a brave little guy, I'm sure whatever he decides to do he will do it with a big heart.
glad to hear things are going so well... we should meet up for dinner some time... aron's promised us some good pointers on where to go out in san francisco...
So relieved and happy to hear that the news from today was good for you all. We're thinking of you all the time. Amanda and Zach
Remember as bad as this is and it's bad don't let any one kid you..It sucks...those nasty meds with long crazy names make little people well. what a brave little boy...puts whiny old gramma to shame...
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