Another surgery, Now what?
On 2/8 Kai underwent his second craniotomy. They were able to get what they call a ‘gross mass resection’ or full removal of the tumor. This was great news, it also meant that we were no longer eligible for the clinical trial in Seattle we were set to start. He experienced something that doctors call “posterior fossa syndrome” where for 7 days he didn’t speak or move his body. He just fussed pretty consistently. It was awful. They say it happens to about 30% of kiddos who undergo that type of surgery. They don’t know why it happens and there is nothing that can do to help. It just takes time, and there are some kids who don’t come back from it. All very scary. We started showing Kai videos of himself before the surgery, walking, talking, laughing and it really seemed to make a difference. In a few days, he started small but started to come back to us. I always tell Chasen that it breaks my heart that each time he is strong and ready to tackle another milestone, we knock him down with some terrible treatment.
Our CHLA team encouraged us to consider radiation. Now that Kai has no tumors that they can see on MRI, this is an option. If he had any ‘visible’ disease, it would not be. Neither would the surgery.
But, we know with ATRT that there are still microscopic cancer cells waiting to duplicate, so we have to continue to treat him.
Radiation is very scary. It can have devastating effects on a person, especially a kid as small as Kai and with his brain still developing. Also, because it can only be focal radiation (only on the area that continued to grow despite the chemotherapy) in his posterior fossa, they can only administer so much, with the assumption that we will need full cranial/spinal radiation when he is a bit older.
Everything we are doing right now is a bridge to get him to an age where full radiation is an option because that’s the best data they have for killing this cancer. I’m VERY hopeful we don’t ever have to go there.
So, as we considered this next step, we decided we wanted to explore proton radiation, which shows a slight advantage of less damage over photon or Xray. Unfortunately, CHLA does not have a proton facility, so staying in LA wasn’t an option. We reached out to many experts and asked for them to consider Kai. Both St. Jude & Seattle Children’s (top proton centers) refused to radiate Kai. This was scary, but we kept pushing.
We landed at California Proton Radiation Center in San Diego. They are partnered with Rady’s Children’s hospital. The team there felt that they could develop a plan for Kai. It felt right, so we decided to start ASAP. Kai would receive daily radiation, daily sedation, M-F for 25 treatments.
As we started researching housing options for the short term (6 weeks), near the center, we were worried to see the price tag near $6-7K for the timing we needed. San Diego is 2 hours one way from LA, so we had to be down there. Also, we wanted to be close because nausea is one of the main side effects so a long car ride seemed unreasonable.
I asked the IG community that has been following Kai to help. To share. To see if anyone had a place we might be able to stay for our time down there. A friend of a friend told her cousin about Kai and he reached out. As we began talking, it seemed like it might work out and once we were confirmed to stay for the majority of the treatment, it allowed for a huge weight to fall from our shoulders. They also helped us find a school for Cruz so we could all be together in San Diego. Apart was just impossible on us all. We are so incredibly grateful for kind souls like the Brown family.
As I write, Kai has completed 6 out of 25 of his radiation therapy. It is a constant learning curve to be sure I’m advocating strongly for him. I’ll continue to update everyone daily on IG, it’s just simpler in real-time.
We are still in need of a place to stay from 4/13-4/20 (ish). If the machine is ever down, it could cause our end date to shift a little. If you know of anyone in the Mira Mesa area of San Diego, please share our story.
As we transition out of radiation and into another round of chemotherapy, I’ll continue to share.
With love, cherish each day and hug your loves tight.
Melissa