Grayson’s roller coaster of a journey fighting metastasized neuroblastoma
17/08/2025
Super eventful summer turning into another school year soon!
Emotionally- he is perfect! Running around. Playing. Ect.
Medically- Grayson has been diagnosed with Horner’s syndrome. (There’s nothing we can do about it and as of right now the only symptoms are pupil dilation and only sweating on one side of the face) He has scans coming up the August 28th following protocol so as always we are hoping for the best! Still has the thyroid issue going on and we are trying to get that to stabilize with medication. Hearing aids are a work in progress he loves them some days and others he doesn’t even want to see the bag.
02/06/2024
January-June. We have just been trying to settle into our new home. Grayson is now doing monthly doctor check ups for labs and every 3 months we check for signs of cancer! He has been doing amazing! I’m so proud of him! I had to take some time to get everything together due to the fire and the appointments and just my mental health. So I had to put his page on the back burner! Hoping to start posting again more frequently!
15/01/2024
Round 5 immunotherapy starts today! Almost there! We started this one off a little rocky with a fever last Friday and some cold like symptoms. Grayson hasn’t been eating since he has been off the loralatnib ( the clinical trial drug which was not what we wanted at all ) so we decided it would be best to place another ng tube today. He was down 9lbs in a month. Energy isn’t there and just overall meh! Still happy! Still loved.
03/01/2024
28/12/2023
Grayson has been doing good! all scans came back as no evidence of disease! Without his loralatnib he hasn’t been eating as much and has lost a little Weight but we are working on it. immunotherapy #4 went well with a little bit of pain but that’s what the pain pump is for. Just over all a happy crazy little 3 year old boy who says hi to ever person he sees!
I just want to say thank you for continuing to follow along with his story and say happy holidays! This year has been rough… hopefully this next one will be full of fun surprises.
20/11/2023
First I want to start this post by apologizing! I need to update more but we have had a not so pleasant experience with a stalker….
Grayson has been doing amazing! We have been spending our time outside and living life! Today is day 1 of round 3 of immunotherapy. We got checked in to hotel pediatric around 9. We’ve decorated our room windows for thanksgiving! While trying to get settled in for the rest of our week.
Today we have received some pretty scary news! There has been some pretty bad side effects associated with Grayson’s clinical trial drug (loralatnib) while on the immunotherapy drug (Dinutaxmab) he is on. Luckily we have not run into any problems but we have to stop his clinical trial drug immediately and we will resume it once he is done with immunotherapy in march. This has been really hard for me….I did not take the news very well.
We also have Grayson’s disease evaluation coming up the first week of December! I know it’s Christmas but I’m still hoping for no lights!!!
As always we are super busy but he is doing great!

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