Tag: brain cancer

posts related to brain cancer and/or ATRT


As Aki noted, the steroid medication wreaks havoc on poor Kai. He seems to pass most of the day by asking to have a bite of every possible food item in the house, but rarely has any desire to stick to that item. It also causes insomnia which makes for long nights. That being said, his grandmothers (Mia and Nana) appear to have just the right touch. Little Buddy took a nap on the couch with Mia this morning, actually took a nap in bed this afternoon, and now is taking a nap with Nana! And what does he always ask for after waking up? Milk or food, of course!

kai with nanamia helping kai sleep 03.16.14

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.



I find it completely remarkable and overwhelming how support, encouragement, and prayer we’ve experienced this past week…and that’s really only the support we know about through texts, phone calls, emails, and social media. Much of it is from people we have never met, but all of it is from people who care.

It hasn’t even been 24 hours since the proverbial bomb was dropped. I know Aki and I have both gone to dark places and it’s amazing that every time we get pulled out by everybody fighting for Kai or by Kai himself.

Kai is doing well right now. We still need to wait for 2nd opinions. We have heard stories of 2nd opinions being life changing. We have heard of connections elsewhere in the country that can provide 3rd and 4th opinions and may have expertise specifically with ATRT. I even heard that there will be a prayer for Kai by the Priests at Mass at Notre Dame on Sunday.

Thank you, all!

And of course one of my favorite pics of Kai, Maya, and Aki. 🙂kai and mom laughing 2013

Hope and Joy and Faith

Ok let’s be honest here. I’m in need of some hope and faith. To be very honest I just prayed to God over Kai that He would carry Kai on this journey and I wanted to give up all selfishness in wanting to keep him here on Earth because I do not want him to suffer and if He is to take him soon that He please do it peacefully. And the truth is, after this prayer and I guess giving Kai to God, I felt some hope. But I need your help. Kai is sleeping really peacefully right now – this is amazing. There is that verse that talks about faith as small as a mustard seed – and I have been struggling to have that these past days especially after yesterday’s diagnosis. So let’s hear it for faith, joy and hope! I want to believe, I really really do. Because I do know God can heal. I remembered this one video that I thought I’d share as good inspiration…. Kai thinks he’s hilarious and somewhere in his head he’s told himself THE best joke ever.

thank you for helping us have faith – you are being the Body of Christ to us and it is amazing.

and as I’m finishing this – Kai is awake and he is hungry and he got off the couch and took my hand so I could help me walk over to the refrigerator to show me what he wanted. He also stuck his finger in my ear to tickle me. These are good signs I think. 🙂