Night of 12/22/22
I’m currently snuggled up on my couch with Ian, watching Moana for the hundredth time, as I type this out. But it’s a moment I wouldn’t trade for the world.
We are slowly getting back into our life and new routines. Ian is back in school 3 days a week for part of the day, outpatient therapy 2 days a week, and is moving and grooving around our house like a car with no breaks. It’s hard to imagine that a few weeks ago, he could barely move. Now, we can’t get him to sit still! We’ve refrained from using his wheelchair at home, giving him more opportunities to do the things he was doing before the hemorrhage.
I do feel really grateful that Ian is here with us after everything that happened. But I’m also stressed. And at times, a little frustrated with myself and how things are. It’s hard to admit, but I think it’s necessary. And it’s better to admit that than try to pretend like everything is fine. I’m just having trouble navigating our new normal. Remembering doctor appointments, working weird hours to accommodate those appointments, administering and getting medications, supporting Ian when needed physically, mentally, emotionally, and academically, navigating the life of a pre-teen whose involved in National Junior Honors Society and trying out for the girls’ basketball team, helping Ian to get around, cleaning the house (maybe), oh, and let’s not forget that the holidays have crept up on me faster than I anticipated. And somewhere in between all this I’m supposed to pee, drink water, shove a meal in my mouth, and make sure I give myself some self-love to refill my own cup to be able to provide all of the above? I’m not navigating things well right now, but one day I’ll get there. Hopefully.
But all in all, I would say we’re doing well here. Ian had his routine MRI yesterday, but unfortunately, because we got scheduled a little later than we normally do thanks to the hospital admission, we couldn’t talk to his doctor about the results until tomorrow. Part of me is very nervous for the results. The other part of me seems to be in denial. I keep telling myself “It can’t be worse than what it was last time,” but let’s face it, I never expected any of this to ever happen. Not my family. I was able to see the results through the online portal, but I’m obviously no doctor to be able to fully understand what it all meant. I will say, I didn’t see the word “progression” like with the MRI from September when the tumor doubled in size. So, I feel calmer in that regard. But there’s still a lot to discuss. Ian still had a major brain injury with the bleed, hydrocephalus, and mini stroke. While I’m worried about what the scan might show, I’m still feeling okay about tomorrow. Ian seems to be doing really well, and that in itself has given us so much hope.
12/23/22
Well, the results are in…. NO PROGRESSION! Ian’s oncologist actually told us that he was very pleased with the scan considering everything that Ian just went through. The thing with Ian’s tumors is that they go all the way from the front of his brain to the back all along the left side, but a lot of them are so small that we can’t even get an accurate count on how many there are. Our doctor told us that some of these smaller ones that appeared to have gotten bigger while we were inpatient seem to have now slightly decreased. And there was one spot on the cerebellum that we knew was there but would rarely show up. This scan showed it being more prominent, but again, it was teeny tiny and not of major concern.
Our big thing to talk about was next steps from a cancer and treatment perspective. We will be attempting to start a MEK inhibitor in January. This is a pill that Ian would take twice a day at home. It’s not chemo, so it doesn’t have the same side effects, but nonetheless, there are some side effects, as with any medication. But these side effects were much more manageable for Ian to be given the chance to live a more normal life. (Whatever that means anymore.) This treatment has shown to be 90% effective in keeping tumors, like Ian’s, stable. (We can thank our new diagnosis for being able to find something that may work for him!) My understanding is that Ian can be on this for YEARS as opposed to chemo. You can’t be on chemotherapy for specified periods of time due to the toxicity of it. Years of keeping his brain tumors stable? Sign me up!
A big downfall we may run into is that insurance tends to not want to pay for this. But our doctor already warned us and told us he doesn’t stop until he wins. It’s a shame insurance companies can deny something that could quite literally save my baby’s life, but that’s a rabbit hole I don’t want to go down. At least not right now with all the good news and holiday spirit.
We’re really excited to spend the next few days with our families. We normally spend Christmas day running around all day to 3 different places, but this year decided that we would spread it out over the course of a couple days and stay home on Christmas. It was more important to be able to spend quality time with everyone. It’s about the feeling, not the day itself.
My kiddos have been through ALOT these last couple months, and they deserve the very best Christmas. I hope Santa doesn’t disappoint them. (But I don’t think he will since some “angels” gave him a helping hand… we can’t thank everyone enough!)
And on that note, from my family to yours, I hope you all have a happy holiday!
