stable & steady
Happy New Year Everyone (I started writing this update in January…!)
I am sorry that our updates have been few and far between - but we have finally established a more stable & steady routine. As some of you might remember, 2024 began with a very scary, sedated scan.
To be honest it feels like just yesterday I was writing that update - but it was over a year ago!
To recap on 2024, we fought upper respiratory issues the entire year - and focused on mitigating breath holding episodes while trying to maintain normal life & pushing Jack through lung therapies. The days were long & the fights were constant - but in the end, August 2024, we had our last pneumonia episode.
We do believe we are in a healthier lung place - and can manage most of what needs to be done at home.
Jack had another quick scan Thursday, January 9th - he did so well, sat still for 9 minutes and had a fun play list that child life put together.
Results were stable.
Again, no shrinkage.
His oncologist would like to do a full sedated scan using contrast to allow us to see the density and margins of the tumor. This will be likely late spring/early summer.
Our biggest hurdle now is Jack’s weight.
Growth chart for Jack’s weight - since being treated at Hopkins…and starting chemo meds. Shocking, right?
We’ve tried a few meds to stimulate metabolism or curb appetite but nothing has worked thus far.
Since he has been in sports and at school everyday, we expected a few pounds to come off, but instead he just keeps gaining. Jason and I truly believe this is due to his chemo medications & the location of his tumor; the theory is that he has hungry brain due to hypothalamic obesity.
We continue to work with his endocrinologist who is a pediatric obesity specialist…
she thinks maybe the GLP-1 agonist (ozempic, wegovy, etc) drugs can help folks like Jack.
They are not approved for patients under the age of 12.
However, at the rate Jack has gained weight - we might have to seek approvals to give them a try.
His weight, coupled with the chemo drugs, makes him very lethargic, he suffers from joint and muscle pain.
This weight does not help his apnea or his oxygen levels…
When he is older, he likely will have more control & make better/healthier decisions on his own.
He should start to understand the results of diet and exercise.
Until then, we are just the bad guys telling him no all the time & pushing him when he is tired.
I am not sure if all of you have had the flu this season - but it wrecked us.
I personally was sick for 12 days - and quarantined from Jack.
Somehow he got it though - and has been home from school for four days now.
The same he always deals with, low-low energy, fevers, and needs oxygen full-time.
Hoping he can make a recovery soon.
But we know now that we have no control over it -
and we just have to stay home & do therapies as much as possible until he’s on “room air” again.
All that said, Jack had an amazing fall & holiday season, he is loving kindergarten and is extremely intelligent. Missing school hasn’t affected him learning wise.
We got a new puppy that has an adorable connection with all of us - but especially Jack.
He’s been playing lacrosse, soccer, and some basketball!
Instead of finding him a sitter when the girls have something, he’s been tagging along to all their activities - and has been on the sidelines cheering them on.
We are doing okay. Keep praying, thank you…
<3 The Taylor Family
