06/09/2026
BIG LONG READ!
Big brother was there today, to help Ollie feel big and strong while getting accessed. He also got to understand that this is not fun time for Ollie this is exhausting just waiting in a room getting pumped full of 3-4 medications. Entered clinic today at 9:51, didnt leave until 2:46.
Good News, still in remission, however we have some things that we discussed with his oncology team, due to him getting fevers, and having two pet scans now in remission what is the benefits od continuing chemo, long term effects of it, etc.
Long term effects:
- unfortunately there is not enough data to give true information, however what they do have data on, is there currently is no concrete evidence of long term chemo affecting other vital organs, however there has been some studies that show neuro pathways being effected, forgetfulness, struggles in school, etc
Continuing chemo while being in remission
- with 6 months of chemo under his belt (actually 7 but data is only 6 mos and 12 months currently) 5 out of 10 children it doesnt return. With 12 months of treatment 7 out of 10 children it doesnt return.
-with limited data it is hard to say what the roght. Choice wouls be
If we stopped chemo what would the next steps be?
- 2 weeks after stopping Port removal
- 6 week 2 day appointments foe ultrasound and blood work to check to see if LCH has returned for a minimum of 18 months then moved to every 3 months for an additional 3 - 4 years
- no more petscans as thats a lot of radiation, and it wont pick up LCH spots unless it is larger then 3cm which could be found on ultrasound. However if something is found on U.S then a petscan will be ordered
If we stopped would the same chemo be utilized?
- short answer no - unless it came back after 2-3 years after completed with chemo (late recurrence)
As a parent you want to make the right choice for your kiddo, keep him on a drug that is quite literally poisoning him For a 20% greater chance ia one hell of a decision. It is not a fun one at all.
For now we have decided to continue chemo, but that can change at any moment. I thank god for continued grace through these trying times, and so thankful for this group of all you amazing supporters.
The letters, the gifts, the cards the kindness is overwhelmingly amazing.
