Category: Kai’s ATRT Journey

Posts from Kai’s time in the hospital


Kai was peaceful when he came back from surgery and was able to sleep for a few hours although was woken up frequently for checkups. 

Kai is struggling this morning, though. He is considerable pain, more so than we’ve seen him experience in the past. The staff is adjusting fluid drainage rates but his breathing is labored and O2 levels are low. Along with the lower heart rate he is displaying the same frightening symptoms as before. 

An MRI is supposed to happen so the doctors will get a good look at the inside of his head. 

Thanks for your thoughts, support, and prayers. 

Surgery Complete

Thank you so much for praying. 5326aae94db921936624bdb6
Surgery is complete and all went well. Kai is sleepy from pain meds, but awake.
He will have another MRI tomorrow sometime. Will update when we know more.
Thank you,

Surgery Tonight – Please Pray

Hi All,
Tonight in the ER, a CT scan showed that Kai has fluid on the brain which is creating the same kind of pressure and symptoms that the tumor did. 
In the next hour, he will be having surgery to drain that fluid and relieve that pressure. 
Please pray for a smooth surgery, for the doctor (Dr. Lee), for Kai to feel comfort and free from fear, and peace for Shawn and Aki.
I will update as soon as the surgery is over. 
Thank you,
Amanda Brown

I want to ride bikes

It’s been a week since Kai had his brain surgery. When I write these words I am still in disbelief…. what is happening? He had what? last Saturday? He’s been diagnosed with cancer?!?!? Our world is upside down. We’re moving and doing and the time is passing but part of me is stuck. I wake up sometimes laying next to Kai as he’s in and out of rest during the night and I forget what’s happened. And I see his swollen face and I feel awful when I break out in tears. I don’t want him to feel this pain. Right now the Kai I know is hard to see – I didn’t realize how strong an effect the steroids can have on his personality until we started asking around. I admit I’m scared that even when he is fully weaned off the steroid, what will he be like? But the truth is, Kai’s spirit is in there still, he’ll be cranky moaning and then offer some of his food to someone or he’ll have his face buried crying and then say he wants to see his friends. But it’s hard. And I dont, dont want to see the disease when I look at him. I want to see the huge, joyful life and spirit that is Kai.

This is where I’m struggling on what to do next. We’re now hearing of survivors. They are very few but they are there. I have so many questions. Was it worth it? What are they like now? I feel like he’s being tortured now, do I put him through more? For what purpose? I have not done much research – Shawn is heading this up with much help from so many friends and especially a friend who is just amazing at assimilating and digesting so much complex info. We are SO thankful for all of you who have reached out with connections and helping us learn more and more and more. You guys are so selfless and generous and kind, oh my goodness I don’t even know how to begin to say thank you.

But as we are struggling through processing, researching, considering options and trying to be patient with the craziness, crankiness, restlessness, and uncomfortable-ness (is that a word?) that the steroids are causing Kai, I also do see him getting stronger. He doesn’t want to stand up and walk, but when he does he does it better. He doesn’t want to practice going from sitting to standing, but today he does it better than yesterday. And today he climbed the stairs up to his room with Shawn. These are big steps.

And yesterday, he wanted to sit outside in his little camping chair and his friend Nicco came by and rode his bike. Kai was sitting in his chair saying he wanted to go in. Then he saw Nicco – immediately he said I want to ride my bike too. Yes, Kai. Yes. You are going to ride your bike. I picked him up and put him in his bike and he pedaled, he wanted to follow Nicco. Then he saw Piper’s house, and he wanted Piper to ride bikes too. Piper and Nicco, one day hopefully you’ll know what an amazing thing you did for Kai yesterday – you inspired him to move, you pulled his spirit out from under the drugs and disease. And I know in this picture, the stink face is front and center, but that’s just the outside. But if you’re looking for Kai, his life and spirit, it’s there front and center, playing outside with his friends.

Kai and Piper and Nicco on bikes 03.14.14

Thank again so much for helping us navigate this new world and new vocabulary and new life we’re fumbling and stumbling into. Thank you for continuing to pray. I lost it in a big, awful way last night and thinking of all of you out there not giving up hope and praying helped bring me back. Thank you.