Clear Scan and Clear Skies

 

That's right peeps, last month gave us another clear scan for Sebastian! Hell yeah! Let's just take a moment to say thank you to the universe, fate, chance, goddess, god, flying spaghetti monster, or whatever you may believe in. "Relieved" doesn't quite cover the emotion for us. Each of these check-ups is filled with pain and tears for Brian and myself, even when we're confident it will all come back clear. It's scary to have to give your kid radioactive iodine, even though they say it's "safe". It's scary to put him in a machine that emits "low-dose" radiation, but takes over 200 images, so how low-dose is that really??? It sucks big, hairy balls to have to relive the fears and doubts of last year all over again. Yeah it all sucks. So "relieved" is just too mild of a word to express how we feel each time this comes back clear. Maybe SO FUCKING ECSTATIC is better.

 

This mibg scan took another 3 freaking hours just like last time. Only this time, it wasn't because he wiggled too much, it just took that long to get everything just right. What a badass kid we have on our hands that can sit through that nonsense without any sedation or too much complaint. They give him breaks and such but still. Most adults I know don't even go through an hour long scan without some sort of drugs to take the edge off. They offer sedation but since he's done so many scans in his life without any, we never say yes to that. Seems best to reserve the hard drugs for surgeries and procedures where it's really necessary, especially for a child.

 

But still this scan makes us nervous with the radioactivity mentioned above. People with NF are advised to keep their exposure to radiation to a minimum as it appears NF may make them more susceptible to the ill effects. Whether it does or doesn't, most people with NF end up getting WAY more imaging in their lives than the average person does, so it makes sense to limit it wherever possible. We bring it up every time they want to do any type of scan that involves radiation (mibg, CT, X-ray, etc.), but are usually met with the "this is necessary" answer. I get it, I do, they don't have a better way to check his body for neuroblastoma cells. There's blood work and urine tests of course, which they also do every time. But the mibg scan is the best way to be sure.

 

Now, however, we're at a year out from surgery. So we were hoping and thinking he wouldn't have to do these every 3 months at least. But his oncologist said she would like to keep doing check-ups every 3 months, because if this had been a regular neuroblastoma tumor (as opposed to the very rare, composite pheochromocytoma with patches of neuroblastoma that it was), she says they would still be doing check-ups and imaging every 3 months. She is, thankfully, good with switching these to ultrasounds. Yay for ultrasounds! No radiation, much faster test, and way, way, WAY cheaper (as if I'm allowed to worry about money during this shit). At a year out she said she'd want another mibg, but when I brought up the radiation concern again, she listened, thankfully, like the good doctor and human that she is. She'll discuss it with the tumor board I'm sure, but said she'd be okay with just doing an MRI at a year out as long as all all his lab work and ultrasounds stay clear. Can I get another hell yeah???

 

So while we're on the topic of NF, we have registered Team Sebastian for this year's NF walk in Seattle, WA, as sadly, Portland no longer has one. Their plan is to have an in-person walk and a virtual option, so for those of you who are too far away to make it to Seattle in August, you can still join virtually. If you'd like to join our team or donate, you can do that at the link below. I'd also ask any of you who are in the sharing mood and are on social media to please share this link for us. The Children's Tumor Foundation (CTF) is an amazing organization and perfect for anyone looking for a worthy non-profit to donate to, even if they don't know us or anyone with NF.

https://join.ctf.org/TeamSebastian2021

 

Life is a bit chaotic right now as we are in between houses, so that's all I have for you today. Next post will bring you some more interesting stories from our family adventures, as well as pictures of our new house! I am seriously looking forward to the move being over and life to calm back down, and it does look like lots of clear skies ahead of us. So until next time, stay safe and healthy and enjoy this beautiful spring!

 

 

Hugs and Love,