I have alot to discuss, but I'm not sure how much I'll get out tonight as I am so exhausted. We had to leave by 6 am and just got home at 6 pm. Donavynn had to get chemotherapy and hydration from 8 this morning until 2 and then we had to head over to Overland Park to meet w/ his radiation team. They were great and he was so brave as usual. I was a little concerned because a couple months ago when we showed him the video of another child getting radiation he kind of freaked out. But today while they were fitting his mask I had to remind him repeatedly to keep his mouth closed because he kept laughing. He was just incredible as always. He's super excited that he gets to keep his mask when he finishes radiation lol. I spoke with the doctor and she took the time to answer all of our questions. He can be in the sun, which at first we didn't know about, but because his dose is so low it should be just fine. The success rate of this protocol is very promising - so here's hoping. And secondary cancers are very rare and if they occur it is usually 20+ years down the road so lets hope he stays healthy after this as it is such a low dose. They also don't believe it will affect his counts, though it can and that he shouldn't have any skin burns though that is possible as well, especially with as fair as his skin is but with the dose as low as it is hopefully he'll be just fine. His schedule for the next month is as follows
10/23 - Bone marrow biopsy - if he makes counts he'll start week 51 which means Vincristine, starting Dex and Erwinia shot number 1
10/26 - Erwinia 2 10/28 - Erwinia 3
10/30 - Erwinia 4 (wk 52 Vincristine)
11/2 - Erwinia 5 11/4 - Erwinia 6 and if he makes counts will start radiation
11/5 - Radiation
11/6 - Radiation and Erwinia 1 (wk 53) (start 2nd round of Dexamethasone)
11/9 - Radiation and Erwinia 2
11/10 - Radiation
11/11 - Radiation and Erwinia 3
11/12 - Radiation
11/13 - Final Radiation and Erwinia 4
11/16 - Erwinia 5
11/18 - Erwinia 6
Then we see how his counts are and they determine if GCSF is needed to boost counts to at least 500. The next round after this craziness is long term maintenance. I'll try to update again when I have time and am not quite so tired. Please continue to pray for my little boy!
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