“no change”
If you follow us on social media, you saw that the Jack’s September scan results were “no change.”
Jack’s tumor is stable, has not grown, but has not shrunk since September of 2023.
Devastating news would have been growth or “enhancement”.
So we are happy with stability - but were very disappointed with no change.
It leaves us to wonder if the medications are working or if his tumor would be stable on it’s own.
At this point though, the risk of going off the meds is not worth losing any shrinkage we’ve achieved.
The original treatment plan was for two years - therefore, we will likely have 1 or 2 more scans between now and May 2025 - the 2 year mark - and make a decision then. We have heard of other families who have been on these medications for many years. The problem is that those children do not have the side effects that Jack has. Jack’s weight is not controlled - we started him on a stimulant in the summer, and have see no results from that. We worry that it will continue to increase - and if the medications are causing that, and not helping the tumor, what are we doing?
We just don’t know.
What we do know though - is until then, we continue living the most normal life we can.
And to be honest, more recently I’ve felt like we are doing a much better job of that.
We’ve been less crazy about checking Jack’s oxygen. This has allowed him and us to feel more normal & have more freedom. We don’t immediately freak out the moment he is low - and his oncologist said that is okay. He is clinically looking better and more healthy. His breath holding episodes are less of a worry.
If you’ve seen us around, you’ve probably noticed a new Jack. Maybe even a new Taylor family.
We appreciate the calls, texts, and all the support you’ve given us.
Please keep praying for Jack - his complex case & his doctors to help us figure out what is best for him now and for the future.
Thank you!
<3 - The Taylor Fam