And now we.. keep fighting..

Allowing for a few days of the shock of Kai’s cancer coming back, not only in the originating spot but in the front part of his brain and on his spine, to wear off, we started working hard to find something to offer him.

St. Jude had another traditional chemo treatment to offer, but it just didn’t sit right for many reasons. He no longer had focal radiation as an option because it has spread to multiple places. Meaning, we were done here.

We reached out to every expert we know of that studies ATRT, and let me tell you, it only takes ONE compassionate soul to give you a little time and in creeps a tiny bit of light and hope where there once was none.

Let me back up. One of these incredible souls is Dr. Laura Prolo out of Stanford. If you have followed Kai’s journey, you know she is the brilliant surgeon who got the original tumor out and gave us almost 4 months of a cancer-free fight. When we told her the news (hours after we heard it) she immediately called a colleague who works in Seattle to see if Kai qualified for a clinical trial they have going on there. It’s for ‘relapsed’ as they call them (who are no longer cancer-free) patients. This trial is called CAR T Cell immunotherapy and it takes Kai’s T Cells, engineers them to theoretically fight his cancer, and puts them back into his body to do the work. It’s still VERY new and only in phase 1, meaning it’s being tested for safety (Phase 2 is for efficacy).

She got the ball moving on getting his tumor samples to Seattle to be tested to see if he is a candidate and blew us away with her kindness. She truly has been Kai’s biggest supporter and we could not be more grateful.

So, then we needed to know, what now?! We have to ‘bridge the gap’ between now and that being a potential. Again, we didn’t like the only option we had here, so we talked to ALL of the ATRT experts. We got in touch with another amazing woman (there is a trend here!) Dr. Holly Lindsay out of Houston who took time out of her busy day to spend with us talking through the only other option she could think of that might have promise.

This protocol, MEMMAT has shown some promise and also allowed for kiddos to have a better quality of life during treatment than with traditional chemo. It still is chemo, it’s just done in a different way. It’s globally accepted and although not done at St. Jude, it’s administered in most Children’s hospitals around the country and abroad.

One hospital that stood out (top of the list of the best) was CHLA. Los Angeles. Our home. The place we have the most support. So I spent the day literally stalking and begging every human at CHLA that would tolerate listening to me until I got a call from Kai’s new doctor and SHE said, let’s do this. Next week, get here. Fights were booked and although it means spending some time away from Chasen and Cruz because they will need to close up shop here and we don’t know how long we will be in LA (again, if we get into Seattle, that is next up)… so…we have to figure out how to move when you don’t know where you will be…

Also, this might not work. There is a chance, just like with the last therapy that it doesn’t stop the spread. ATRT is aggressive and ugly. It’s rare and awful. These sobering thoughts are the worst and I hate them and I try to keep that out of my mind, but they are there and they are our reality.

But we have to try. Anything we can. There is not much else that can be done. There’s another “maintenance drug” that we will try if this doesn’t help slow things down, but the first thing is first. We go to LA. Kai gets an ommaya implanted in his head. One more implant. They will administer some of the chemo directly into his brain. If we get into Seattle, this is also how they administer the T Cells directly as well.

We continue to tell our story in hopes that this keeps a light shining on children’s cancer and it can get more funding, more help, more attention. It’s lacking and it’s so important. Please send light or prayers to all the deserving kiddos. And their families.

Sending all our love, hug your loves. Now and as often as you can.

one love.