Our Fight Through a Difficult Year: An Update on Kai
Somehow, it has been almost a year since I updated this blog. I have kept my commitment to regularly updating on Instagram, but I understand not everyone follows along there. Last year was a DOOZIE, and this year, well, it hasn’t been easy, but we have been steadily healing from a really tough 2024.
It still feels like we are playing whack-a-mole with tumors as they pop up. Last year, we fought off four new tumors, mostly with radiation. The chemo we were administering seemed to keep things somewhat under control—preventing the fast-growing tumors that ATRT is known for—but we were still seeing spots pop up and threaten to make things even worse. Once they get going, they start to multiply quickly if left alone.
On top of the tumors, last year we also lost the use of Kai's pituitary gland. We replaced its function with a medication called Desmopressin, or DDAVP. It’s a tricky one. Kai took on swallowing pills with no issue, but we then had to tackle how his metabolism and other medications affected it. He might need more or less at any given time, and it has to be managed with incredible care, as the medication controls his sodium and potassium levels. If those get out of whack, there can be swelling in his brain, and we definitely notice it causes headaches, appetite loss, and behavior changes.
This Year's Journey: Trials and Tough Decisions
This year, we started a new drug called Gemcitabine, which we hoped might pass the blood-brain barrier and attack the tumors. But with scans in February, we saw new ones. We gave the drug a little more time to work and even added Topotecan via his shunt to ensure the drugs were getting into his brain, but it wasn’t enough. A scan in April showed more progression.
By July, we saw additional growth and decided we had to do radiation again. This would be his 65th dose of focal proton radiation, and this one would be tricky. The two new tumors were on and right next to an area we already radiated back in 2021. Thankfully, given the time that had passed, the tissue had healed, giving us a better chance of walking away without major damage. Still, the risks were there: loss of mobility, memory loss, cognitive damage, and significant inflammation.
In August, we went down to San Diego once again for 10 rounds of focal radiation. We had to stop the chemo and assume it wasn’t working.
A Welcome Reprieve and Good News
September was for rest and recovery. His little brain got a wonderful break, and despite small bouts of aggression and confusion, it was nothing major. He got to spend time at school with his friends, feeling pretty good, and it was just amazing to witness.
In late September, we had scans, and they looked pretty good. No new disease, and the two tumors we treated seemed to be mostly gone with minimal inflammation. It’s all we could ask for.
Where We Are Now
This brings us to October. We’ve now started Tazmetostate. It’s honestly not a drug I thought we would have to start. We have avoided it for some time because it only has a 30% chance of keeping the tumors at bay, and it is known to cause secondary blood cancers. It’s not something you ever want to subject your child to, but we are running out of options.
We need science to catch up, and fast. We need something that might help without causing him more pain. We have our eye on a trial called LP-184 and are hopeful it might become available for kids soon. It was tested in adults with ATRT and appeared to be well-tolerated, so we are extremely hopeful we will have the opportunity to participate.
As a parent and a human, this is the hardest thing I’ve ever done. To watch my sweet boy fighting so hard, to see him feel unwell while there is very little I can do about it, is torture no one should have to shoulder.
Today, we go for lab tests to see how his body is handling the new drug, and then we continue on, as long as he tolerates it. We continue to do our best to make memories with our sweet love and hope, hope, hope we are given more time.