So many things I want to write about. SO many. Its been a hard couple of days. I know it has been for you too.
But quickly an update on Jacob as many have asked what next steps are.
First thing, Jacob is doing GREAT. Loads of energy and happy. Here he is in our word study time during school where he learned the three ways to make the “er” sound. He had fun finding the words and sorting them in our PJs with Panda.
So we continue our hunkered existence…
I was hoping to write that Jacob is off to school…but he is not 100% NED so his treatment schedule is up in the air. And WHAT SCHOOL?! It will be closed by the time we find out Jacob’s treatment.
I started writing the below and never finished. This sums up how I feel about this virus.
You’re kidding right?!
You’ve got to be kidding.
Okay, Ashton show your freaking face!! I want to see it and PUNCH it. This is the opposite of funny. We have waited 8 months for this day and now THIS?!!! I’ve got to be being punked right?! What are the ODDS?!!! Finally, we would see the light of day, and now THIS!!!!
And guess what we have tomorrow…more scans AHHHHH! They are trying to decide if he needs more chemo or if radiation and immunotherapy alone are enough. Through a PET scan we can see how active Jacob’s cancer is that is left. How metabolic it is. I REALLY REALLY hope we are done with chemo.
On Thursday Jacob goes to get “fitted” for radiation. He will go twice a week for 7 days. They will need to radiate the small mass leftover from surgery and also the entire tumor bed as there is no way to get zero margins with neuroblastoma as it wraps around major arteries. This is serious stuff, but we are feeling SO SO blessed for the innovation in treatment with proton therapy. Of course, radiation can cause cancer itself so I’m spinning, but proton is way safer. The only other “side” due to his original tumor size is not growing as tall as he normally would have as they will need to radiate down the spine. BUT we will take it. Just make him cancer-free.
Actually, a fellow Nightwing was instrumental in getting this proton center to open. THANK YOU JON! Jacob and all the patients at Sloan are so lucky this exists. You are saving lives.
And speaking of fittings. Look at Jacob getting his ear mold for his hearing aids today.
He was super excited about this. His choice in color? Metallic red with fire stickers. Nothing subtle about this. You will see those hearing aids miles away. He is owning his flair. Of course, with the issues in China, the hearing aids will be delayed. So I have another month of level 11.
So basically please pass the Tylenol and a shot of the strongest thing you got! But (more importantly) Jacob is doing great. The adults? Not so much.
When are we seeing you
Sent from my iPhone
Still waiting for treatment schedule. Should know by end of day tomorrow🙌
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