January 2022 Part 2
It’s Cruz’s 5th birthday today. We are so happy to be celebrating it with him, being that last year we were in the hospital with Kai, terrified we might lose him and so sad we were missing our baby’s 4th birthday.
Last week, Kai had an MRI scan at CHLA to provide a last ‘baseline’ view of his cancer before we headed up to Seattle to start the clinical trial. We were so worried there might be additional growth because we had stopped all chemo + medicines designed to keep his cancer away on Dec 8th, just about 2 months ago. MRI scans are always gut-wrenching and with a little one, harder because they are sedated for 2-3 hours to scan the entire brain and spine, in Kai’s case.
The team was floored by what they saw. All of Kai’s other tumors had ‘melted away’ as they put it. They were no longer visible on scans. His originating tumor had grown, same as it had every other 2-month scan-about 2mm. This changed everything.
Let me stop and say that so many people that we explain this to immediately jump to, that’s amazing news, right? because they aren’t in this and don’t understand the in’s and out’s of this nightmare. And it’s fair. It is much better new than the alternative. But we had hoped that we might be able to start this trial to give Kai a treatment that didn’t include nasty, terrible, and lethal drugs designed for Adults, no children, or radiation that usually fries kiddos brains and central nervous systems. Those are our cancer-killing choices for kids. Mind you, only receiving 4% of funding to find new options. So, the trial provided a way to use Kai’s own immunity to fight what’s there. His own T-cells. His own body and no drugs.
Because a surgeon will not resect (remove) a tumor if others exist (it’s risk/benefit analysis) and just like the rest of this, it’s unreasonable. So, now that they can’t see any other tumors, it’s our window of opportunity to get this one out and start fighting it coming back again. But with chemo, again. and with the risk of surgery, which is high. They will cut into our baby’s head again and he will fight hard for his life, again.
Also, if they are able to get the entire tumor out, he will no longer be eligible for the clinical trial in Seattle. This trial is not meant for kids who are “NED” as the doctors call it, No evidence detected. It’s really not the case though, technically they know there is microscopic cancer left…which is why it continues to be treated, it’s just not seen on the MRI.
There are so many variables here. If they can’t get it all, we can still try the trial. By the time we resect and they do another set of scans, we could see additional tumors and be in a totally different place.
For now, surgery is scheduled for 2/8. I can’t tell you the amount of pain and anguish we feel 24/7, but we do everything in our power to ensure Kai and Cruz are sheltered from much of it. We have open conversations as a family, but we push hard to live a “normal” life for our kids, for our family.
This fund has allowed us the freedom to make the hardest choices, to make that fast, and to focus on Kai. It has cost us almost all of what has been raised this past year to give Kai the best chances he absolutely deserves. I hold space for any family struggling with this fight and having to make financial decisions accordingly. It’s a terrible place to be and we continue to thank every kind soul who has allowed us some peace with your generosity. THANK YOU WILL NEVER BE ENOUGH.
Kai is thriving and for that, we know how lucky we are. It brings me to my knees to know what these kids deal with and what we are in store for, but for now, we hold onto hope. We hold onto our kids, ridiculously tight. We try not to take a moment for granted. We love hard, we live hard.
We wish your family all the light, love, and health imaginable.
One love.
I’ll leave you with some first steps. Kai is still not walking, but we are hopeful he will get there soon. He wants to run around with his brother so badly!