Kai

It is my honor, as Kai's mama to write about him for the Hope4ATRT fighters page. And what a fighter this kid is.

Our sweet son, Kai Marley De Leon was progressing wonderfully up until his 6 month birthday when we started noticing some changes in his development. At his 6 month check-up, his pediatrician noted that his head circumference had jumped a little bit, but because he was still doing ok, she said they would monitor it. A couple of weeks later, I noticed he wasn't as sturdy in his core as he had been. He seemed a little noodly. I gave him some time to show us he was ok but he quickly started showing signs of progressing the wrong way, with regard to his milestones. A couple of days shy of his 7 month birthday, my mama's gut was wrenched and I took him as a walk-in to the pediatrician, just feeling like something wasn't right. They sent us directly to the ER at Stanford Children's Hospital in Palo Alto.

There, they stuck us both in an MRI machine, my body laying on his as we both wept, terrified. Because it was COVID timing, his dad was waiting in the car, anxiously. When we came out, they said there was a mass blocking the CSF drainage and he had hydrocephalus. We had never heard of such a thing, and we were in total shock.

They took him back immediately for an EVD, which is a surgical procedure to drain fluid from the brain. They allowed him to heal for a day and on 1/29/21, they took him back for his first craniotomy. Brilliant Dr. Prolo was able to remove his tumor. That night, he had a stroke and a seizure due to the trauma to his brain. A week later he was taken back to install a port and shunt for reasons we could have never understood at the time and actually fought the doctors, naively, thinking this could not be his only choice. We now know it was.

Another week went by and we were given the terrible news that he had been diagnosed with ATRT. We started doing homework but felt totally unprepared for the road ahead. We had to move fast to find a team that would treat him and we were not comfortable with the NO team at Stanford, to be blunt. Our first lesson in advocating hard for your sick child. No ego is allowed.  

We ended up moving our entire family from California to Memphis, TN to be treated at St. Jude. Again, due to COVID, we were not able to stay at the housing they provide to families because siblings were not allowed in housing, and splitting up our family was just not an option.

Kai was treated on their SJY07 chemotherapy protocol. This was 4 months of absolute hell and heartache. He was set to receive proton therapy at age 1, but his end-of-treatment scans showed a complete relapse of his disease just before his 1st birthday. All the chemo and hell we had been through did nothing to stop this monster. He now had tumors in the originating tumor bed, two on each frontal lobe and one on his spine. St. Jude did not have an acceptable way forward, would no longer radiate, and generally just helped us explore other options elsewhere.

After speaking with many experts, some of which we had to pay thousands out of pocket to speak with, one very kind soul in Texas told us to research the MEMMAT protocol for ATRT relapse and in our hometown of LA, directed us to CHLA to start the protocol ASAP. I tracked down the doctor's email, begged her to take Kai's case, and flew out to LA 4 days later to start. This was July/Aug of 2021. The rest of our family packed up our belongings and moved across the country, again. Our (now) 5 year old started in his 3rd preschool in a matter of months.

After tolerating the MEMMAT protocol pretty well, our team suggested a clinical trial, Car T cell immunotherapy. We started the process with Seattle Children's, flying up there twice to prepare Kai (which required 2 surgeries) and 2 rounds of apheresis. On a little one, this is very tough. Coming back to CHLA, we did a baseline scan before we were set to start in a few days. We had rented our home out and lined up car transporters, all the logistics required for another move, and a 2-month clinical trial in another state.

The scans came back with amazing news. ALL the disease had melted away, leaving only the originating tumor bed with a mass that continued to grow. Showing again, it was resistant to both chemotherapy protocols had tried, over 10 different drugs. The only thing we had done differently between a chemo wash-out period for Car T to begin and the scans was introducing cannabis to Kai with the support of our team and an amazing pediatric cannabis doctor. We saw such promise, he was a different boy, with more energy, appetite, spunk, was getting so strong. The team suggested a second craniotomy to remove the tumor.

This was done and Kai came out with posterior fossa syndrome which ran its course, but again, is now considered cancer-free as of Feb 9th of 2022. Knowing that there is a falsehood to that because, with ATRT, there is likely microscopic disease just waiting to create another devastating tumor, the team now suggested we do radiation, focally. We could not stay in LA for this because we wanted to do proton and the major proton centers on the West Coast are Seattle or SD. We explored St. Jude, but they did not want to take his case. Nor did Seattle.

We are currently fighting in San Diego. Kai is getting daily focal radiation, under sedation. Cruz (our oldest) is in a new pre-school, again.

Kai is fighting so hard for this life. We stand beside him, we ask him to do the hard work. He is 21 months old and he has been fighting for his life, every day since he was 7 months old.

Thank you for allowing me to share his story. Please support all these kiddos and families who are trying to stay above water. Who would move mountains to spend another day with their babies. Who cry out for more funding for our kids every day. Who advocate and fight like hell for their kids. Support them. Support us. Please. We need it.
one love.

Keepfightingforkai.com