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Hi ladies! I wanted to share this update with everyone, because to me its very exciting. We saw his oncologist yesterday. While not yet officially in "remission" she feels so completely confident that we are in remission that we are already scheduling day hospital for maintenance next week!!!
We have waited 11 months to reach this point, it looks like we have 1 more week of waiting to hear those precious words "no active disease". Scans are Monday at 8 AM, results are Wednesday at 2:45 PM, and we start maintenance Friday with a 3-4 hour visit to day hospital for chemo. As long as Wednesday we hear those precious words, we will have 24 weeks left of IV chemo, 1 day a week.
On odd weeks (1,3,5,7,9, etc...) he will get 2 hours of Ara-C (which is the "salvage" chemo) and 5 minutes of vincristine (which is what we started this journey with) and for 4 days at home he will get prednisone. On even weeks he will get 15-30 minutes of IV methotrexate (we've never done IV but we have done oral) and at home 3 days of prednisone.
After 24 weeks he will then likely do 1 year of oral chemo at home with 2 chemo drugs he's been on before. Hoping I can teach him to swallow pills by then!
If all goes as planned, he will now have CT scans every 3 months until 1 year after all chemo ends, then every 6 months for 1 year, then 1 time a year forever. But considering he's had a CT scan every 6 weeks for 11 months, this is a huge improvement.
And if all goes as planned, when he has 8 years off therapy, his LCH will be considered "burned out" meaning less likely to recur. We still have 1-1/2 yrs before that clock starts, but it is something to look forward to!
I still remember new Years Eve being told not to leave the waiting room for anything while Joey was in the OR, that if he showed signs of problems breathing by himself, they would come get us to say our goodbyes. They did the biopsy with him awake.
Thank GOD he never stopped breathing that day! There was NO WAY to intubate him at all...