Our strong little man
It’s mid-March 2023! We have had a couple of clear scans since our 2nd round fight last year. If you recall, Kai had his second resection to remove the second tumor in his posterior fossa. He suffered from posterior fossa syndrome. Which meant he had to learn to crawl and stand again. He wasn’t using his voice at all for some time and he was crying a lot. It was beyond tough to watch. But we couldn’t stop fighting. He had 4 weeks of recovery at home and we headed straight to radiation.
April/May would bring 6 weeks of daily sedated radiation in San Diego, where many family and friends helped support us to be in yet another new city for his treatment while continuing to stay together as a family. That was so important to us, in our second year of fighting. We finished up radiation and got home and right away his shunt malfunctioned and required a shunt revision—another surgery to his sweet head and more hospital time.
He started more rounds of MEMMAT (chemotherapy direct to his brain) through this port and orally. We had a few months and his body started showing signs it could no longer tolerate the medicine. His labs were dropping to near 0 numbers and should not have been. He was getting progressively sicker, and we spent more time in the hospital, so we had to stop. That was September.
He had clear scans in October and again in January. We have been so proud to watch him get stronger by the day. He has PT to work on his mobility-he started walking for the first time in November and although he is still unstable and can’t step up yet, he is working so hard to keep up with his brother. His right side body is still damaged from everything he has been through. The many surgeries, chemotherapies, and radiation have continued to show how hard they are on a growing little body. He has a left nerve palsy in his eye that is causing him to tilt his head to accommodate and attempt to fix it on this own. We will be working with his ophthalmology group at CHLA to fix this. It may require glasses or possibly surgery. We are giving him more time to heal before we address it because he is doing just fine at the moment. He has feeding therapy to address some chewing difficulty he experiences due to this right-side facial weakness which came from the first tumor and the stroke he suffered when he was 7 months old.
The only medication he is on is his cannabis regimen (not covered by insurance and costly) and we continue to work with that doctor to ensure we are giving him just what he needs to help with sleep, appetite, mood, energy, and nausea. We believe strongly that this plant is also helping keep his cancer away. I wish our government would invest in these kids’ fight and study alternative forms of treatment that are less damaging to their bodies.
We continue to make the drive to CHLA monthly for labs and pentamidine + port flush. He will require his port to be accessed monthly for a simple flush. Each time we head back there, it affects us for days. The trauma is overwhelming.
Chasen continues to work hard for the family. Cruz is thriving in Kindergarten and I’m working as a contract employee trying to cover some of Kai’s expenses and make enough to allow him to start preschool soon (he’s potty trained and ready to go) he’s determined and puts his backpack on daily and asks to go to school. Now we just have to wait on a spot to open, which has been tough.
Our next scans are in May and I’d be lying if I said each day was a ‘good’ day for him. It’s a roller coaster and some days we see things that worry us - then the next day he does much better. We take each day with all the love we can muster and focus on enjoying the time we are given.
Our doctors are careful to offer too much hope. ATRT is such a monster. Yet, we push forward and watch him in awe. The trauma he has endured, that our family has and continues to is something I’d never wish on anyone.
What I can tell you is Kai makes an effort to bring smiles and love to EVERYONE he meets. He is so social and at the grocery store, will walk right up to just about anyone, look up, and smile. Say hi. Give hugs. (yes, I let him give hugs to strangers :) ) He is a bright shining light and our family is so grateful to be blessed by his love.
Our hope is that each and everyone reading this will tell a friend about their strong friend Kai who is fighting brain and spine cancer, since the age of 7 months. That he is a miracle and that more people need to know about him and other kids so that this fight might be less traumatic and damaging for kids in the future. It’s a hard subject to confront, this I understand. But that’s the problem, no one wants to acknowledge it because it’s impossible, meaning nothing will improve for the kids actually fighting this monster. We need more than 4% of government funding. We need some massive wealth and attention given to these beautiful souls.
We hope this finds you filled with gratitude for everything you have. That you take a moment each day to recognize how beautiful life is. Even when it’s impossibly hard.
We love you all. We appreciate the continued support, more than you'll ever know. One love.
#keepfightingforkai