Category: Posts by Shawn

Surgery #3

Kai will be taken off to surgery in an hour or so. I’m amazed that such a little body can go through three neuro surgeries in less than two weeks. The surgeries themselves don’t seem to bother him all that much, either bc he is not aware they are happening or bc it is masked by the general discomfort that he is feeling.

Not really sure what to write but wanted to let you know that the surgery is soon. It’s supposedly relatively routine and nowhere near as major as the original tumor resection.

Last night was rough. Kai started having shallow breathing so he couldn’t have any pain meds. I couldn’t even bring myself to stand at his bedside. Aki stayed with him and sat in his bed all night – comforting him and reading comments that you all have left on this site. That’s beautiful.

For whatever reason Kai had been clinging onto a granola bar that Sheerin had given him last Sunday before coming to the ER. He has not let that thing go. He hadn’t eaten anything in 2 days, choosing to hold onto his food rather than eat it. Last night, out of the blue, we heard the wrapper start crinkling. He had started digging into his snack! Why he chose to hold on to that bar for so long and why he decided at that moment to finally take a bite I guess we can’t know. It seems like Kai, though – stubbornness to keep things ordered knowing that he fully intended to take advantage when the right time came. This simple act cracked me up and made me smile. Of course he wouldn’t let that bar go, he was going to eat it…eventually!

We are hoping and praying that this surgery will be able to alleviate the fluid build up in Kai’s head, better than the external drain anyway. No matter what, it’s a necessary step to getting back home and recovering there rather than in the hospital.

At home Kai can get back to teaching his little sister at an early age how to navigate the maze of videos on YouTube, identifying those few videos that he can watch on an endless loop. 🙂

We love you, Buddy!

kai and maya in the officekai and maya silly on the couch 2013

Update #2

We are still waiting on Kai’s MRI to happen. In the meantime Kai has been in and out of sleep while Aki sings and reads to him. His heart rate and blood pressure aren’t great, so we’re anxious to get the MRI going, although not happy that Little Buddy will need to lie through another one of these long tests. Praying for a Miracle!

Aki is amazing and is talking with Kai in such a positive attitude. This is remarkable given how low we were just a few hours ago. 

Throughout it all Kai is still sharp as a tack, remembering the smallest details of what is happening around him, even from points in time that we think he is out of it. When Aki talks about going to do things with him he keeps reminding us to include baby Maya. 

Thanks to Amanda for keeping up the Caring Bridge updates last night. Kai’s pediatrician, Dr. Prochnow, was kind enough to stop by this morning and let us know that he gets updates faster through Caring Bridge than through 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. 


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