“Life is worth much more than gold”
I updated here last in Jan. I've tried to keep up with updates on IG; if you aren't already following us there, please do. In January, we gave Kai a second dose of topotecan into his shunt and continued on oral chemotherapy until we had to do a clear-out for Seattle's trial. We were set to start in February, but that got delayed until March. Our February baseline scan showed the same tumors we have been monitoring since September.
I don't talk enough about how the additional burden, financial, takes its toll. We went from a two-person income to one but all of our bills increased substantially. Moving across the country for care, moving back. Accessing medicine that is not covered by insurance, full out-of-pocket co-pays, and deductibles. Treatment away from our home hospital. You have to pick up and move, in our case for 4 months (failed frontline treatment -Memphis), six weeks (radiation-San Diego), 10 days (radiation-SD), and one month (Trial-Seattle).. You are not given proper notice to book things in advance so everything costs 10 times more than it should. Meanwhile, to make ends meet, the person whose attention should be ONLY on their child has to share that time between work and her baby fighting cancer. It's barbaric. This isn't unique to our story.
We got the final "you are cleared for the trial" 5 days before we had to arrive in Seattle. Meaning, that at that point, airfare was outrageous. But, we booked it and tried to save in other ways (didn't work out) and pinned our hopes on something in a phase 1 setting because our options are so limited.
Kai faced an extreme battle when we arrived. Little did I know, it would be another very scary experience, in a 3 year journey of VERY scary experiences. This one, I would know nothing about and we would cling to each other, terrified and without our family with us.
in early March, Kai received the first infusion of his own genetically modified T-cells,10 million cells, directly into his head. He had most of the symptoms they expected. It was pretty terrible to watch him so sick. He had vomiting, fever, chills, pain, major headaches, fatigue, and restlessness. And those were just what I could figure out and help him advocate for relief. He is still so young and can't fully tell us what hurt. He kept saying "I hurt my head" and then crying uncontrollably. If I wasn't already broken into a million pieces, I'd break again. I do, over and over, when I watch him suffer.
He resolved some and that following week, he received 100 million cells. The symptoms started about the same but instead of resolving, after a few days, they started getting worse. He wasn't walking or talking. He wasn't making eye contact with me or interacting at all. It was terrifying. I pushed for a CT scan, which they provided with protest. They described diffused white matter and said they were unsure if he would improve. When we came up on the day our next 100 million cells were meant to be infused, he was still in terrible shape. Due to the way the trial was written, we were unable to postpone the infusion until he improved. Instead, we had to choose to drop out of the trail, to ensure Kai was safe.
Not one doctor could tell us if our boy would come back to us if we gave that additional dose. That is what a phase 1 trial looks like. Kai is helping to show if the treatment is safe or not. My baby boy. Who shines!! It was yet another extremely heartbreaking moment for us.
Our end-of-treatment scan, at the end of March, in Seattle, showed stable disease, no change. We came home and took our time getting strong. It took us some time to acclimate back into the swing of our beloved routine. I've continued to struggle with the weight of the trauma I've witnessed. It makes "regular" life very hard to function in. Kai has done ok. Some highs and lows. Symptoms from meds he needed to be on for the trial. His appetite has started to improve, which I'm grateful for being he lost a good amount of weight when we were on the trial.
Our next scan is on May 29. This will tell us a lot and we will be able to make informed decisions at that time. We have a few chemotherapy drugs we can go back to. PNOC is working on new trials for relapsed solid tumors. We hope our journey will continue to provide the best quality of life for our sweet boy. That he can experience all of life’s joys and know our love for him is endless.
We continue to be so incredibly grateful for the community support. It means the world to us. I hope to find the space to give back in a meaningful way and help cause a change in the lives of children fighting cancer and their strong worrier families that help keep them afloat.
Please continue to tell Kai’s story. Please write to your local representatives asking for more funding to support children with cancer. Research, for better medication options, and support during this impossible journey. Simply a chance to fight these evil invaders without losing their lives due to the toxicity of the drugs used. Research in cannabis as an option for kids in this fight. Heck, just acknowledging that kids get cancer would be a good start.
“Life is worth much more than gold”
With love and gratitude.
Always.
One love.