It’s JULY!
Truly, I haven’t had the energy to write much. I wrote an update in May after our scans and we have been plugging away since. We are still on the MEMMAT protocol because it seems to be serving Kai well so far. We’ve only seen a short glimpse of our kiddo here and there since his 2nd resection surgery (brain tumor removal) on 2/9. He’s been pumped full of chemo, making him feel not so good. He’s been dealing with COVID and all kinds of colds because this is life right now. He had mucositis, although not super severe, but enough to make him only eat yogurt for almost a month.
Being a cancer parent is many things. The obvious is a constant worry, right? The many surgeries and procedures. Getting to know doctors, hospitals, clinical trials (that might save your childs life..or at least, give you more time) The drives to the hospital (all the time) the many many meds needed to keep a little one who is suffering as comfortable as possible. The massive financial burden that is simply unplanned when this truck hits you. But I’m not sure people realize that labs being drawn every week or so keep the anxiety levels at a constant high because if your kids’ numbers are off, it’s up to you to try to resolve it. The thing is, our CBC & Chemistry numbers as humans fluctuate so much, but we are not under constant scrutiny, and yes, for good reason, but still, it makes an already impossible situation, that much harder. So, you are left PLEADING with your kid to eat something. Anything. Knowing in the back of your mind that a tube into their tummy is the next step if you can’t make it happen. and don’t get me wrong, there are many reasons why that option is the only one OR the best one…but when you have a kid who is doing (somewhat ok, in clinical terms) the stress to keep him growing is tough.
So, then he turned 2!!!! OUr baby boy turned 2. for us, for our family-this feels like everything. and it is. our first Neuro-Oncology “team” didn’t think he would get much past the 7 months they found him in and they really didn’t think we should be very aggressive in trying. It still blows my mind, to this day. and make me terrified of any other families touched by those individuals. And so very very grateful for the CHLA team and Dr. Margol, Dr. O’Halloran and Dr. Kreiger, and the entire PA team in the IC (along with many others) But this kid… is pure gold.
Kai has not been himself for months. And I mean, since before his 2nd resection, so 6 months. He has been afraid of absolutely everything. anything at all that has to do with leaving my arms has truly been a no-go. Sitting in a highchair, nope. Sitting on one of his many ride-on toys, nope. going to dad, (most of the time), nope. playing with brother, nope. the list goes on and on. Let alone the request to have strangers in full hospital garb poke and prod at him…which we can’t say no to.
Then, all of a sudden, yesterday-which brings me to write…he had the BEST day. He ate and played and allowed me to walk into the next room while he played with a toy for 5 minutes. It was incredible. He’s using SO many words and is very sure of himself and what he wants. He also throws the most adorable fits (and we try hard not to laugh) For reference, Cruz was so darn chill, so this is a first for us.
We moved (again) and for all the right reasons. Our goal was to find Cruz a wonderful elementary to start K in the fall and we did that! We are slowly starting to get to know our new home and whatever the future might bring, we have a place to call our own where we can begin to rebuild some of what has been destroyed these past 17+ months. And we are so grateful.
Kai still needs a lot of treatment (some of which is not covered by insurance) I am still not able to work enough to make a difference. I have started to try to put in a few hours a week, but it’s honestly not the right time yet. I’m so thankful that the company I’ve been on leave with is allowing me the flexibility to try, and also just focus on small projects here and there that can take my mind off this world I’ve been thrust into. Cruz is thriving at his summer camp and I’m so excited for him to start Kindergarten next month. Chasen is plugging away and doing all things work and home while I sit with our babe at the hospital or dedicate my time to his many therapies. If you have it in your heart or can spare the $5 you might spend on a coffee, our family can use the help. Every cent given goes directly to Kai’s care and we could not be thankful enough for the support. There will be a time when I’ll be able to give back tenfold and I look forward to that.
The cancer world is terrible. It’s an absolute nightmare, but it’s shown us so many important things and allowed our family to come closer and remember that we have each other to lean on. and by family, I mean every one of you reading this right now.
We have another MRI to see how things are going. It’s next week, Tuesday. Please send all the love and good vibes. I’ll be posting on IG, and here once we know the results. and we will be continuing chemo for some time until the team feels we can pull back. Until then, and always, I hold my breath, stay in limbo and do the very best for my family as possible.
One Love. Always.