In remembrance of Kai, the plan for today was to treat kiddos to rides on the Zephyr train at Zilker Park. The weather didn’t exact cooperate, so the train did not run, but that didn’t stop many of us from going down to the train and staying somewhat dry (yet cold) under the covered area. Thank you so much to those of you that joined us, many of who drove in from Houston or Dallas!
Despite the cold and the rain, the kiddos there seemed to enjoy the train even though it was stationary, which was really all we needed.
And thanks to everybody out there in Kai’s Choo Choo Crew posting pics of your t-shirts! We’re blessed to have so many who care so much. https://www.facebook.com/PleasePrayforKai
Be on the lookout for a new day and time to reconvene at the Zephyr. Thanks to great friends who put this together, we’ll plan to do this annually.
We missed sitting with you on the train today, buddy, but you were still there with us.
Earlier this month we had no idea that the Head for the Cure 5K would be in Austin. After Kai’s diagnosis, we became aware of the 5K, but assumed that we would be in treatment somewhere and would be unable to join. It pains me that things all happened so quickly and here we are, able to participate in the HFTC event this year, yet Kai’s physical presence was not with us.
There was a tremendous turnout this morning. Team Kai consisted of no less than 40 members, collectively putting in over 200 kilometers! While some of us trailed at the back, pushing little ones in strollers, Team Kai featured 3 of the top 11 runners! Chris G,Chris M, and Conor all posted blistering paces. (We now have a HFTC medal generously donated to Kai.) There was even a medal earned in the under 10 age group!
Amazing group of Altera employees and their families running their own race in honor of Kai!
In addition, these amazing people from work (in Chicago) organized their own 5K while we participated in the Head for the Cure 5K in Austin – we can add another 150 kilometers to Team Kai! While it certainly looks colder there, at least the sun was out. Sun’s out, Kai’s out!
This morning was tough without Kai being there. Still, I felt him with us. When the sun broke through to warm us from the chilly morning we made sure to tell Maya: “Sun’s out, Kai’s out!”. I was excited to see so many people supporting brain cancer research and supporting both survivors and victims, yet at the same time it was saddening. Writing a message to Kai on a wall at the event brought tears to my eyes. Walking with Maya in the stroller brought tears to my eyes since Kai always had the stroller position while Maya snuggled in an Ergo up against mom. Seeing a distant colleague at the same event because he also has a connection to brain cancer brought tears to my eyes. I never realized that you don’t have to go far in the circle of people that you know before you find somebody with a personal connection to brain cancer (let alone cancer in general).
We all missed Kai dearly today but are glad that events like this are around to raise awareness and funds. It was a beautiful morning and taking the time to walk the course was calming. It was a rare opportunity to speak with friends old and new. Maya was able to sport her Kai’s Choo Choo Crew t-shirt and even made a new friend when she met Pierce. Maya isn’t a happy camper when she misses her nap and Pierce was able to get her to smile, which always turns out to be contagious.
I am thankful that I felt Kai today, even though I couldn’t physically hug him. Love you, buddy.
-Shawn
P.S. – How perfect is it that the 5K was held at Camp Mabry? Kai would always call out “airplane” or “helicopter” whenever we drove past Camp Mabry – there are some fighter planes and helicopters on display at the edge of the Camp such that traffic on the highway drives right past them. No doubt he would have loved running within feet of them today.
If you will be in Austin this Sunday, the 30th, please consider the Head for the Cure Central Texas 5K.
The Head for the Cure Foundation is a 501(c)3 nonprofit organization dedicated to raising awareness and funding in the fight against brain cancer. The 5K events are not only successful fundraisers, but unique tributes to those who are fighting brain cancer and those who have lost their battles. Their memories carry on through the teams that formed around them, and the teams return year after year to celebrate their legacies.
The Head for the Cure Foundation works with the Brain Tumor Trials Collaborative. BTTC was created as a network of medical centers with the expertise and strong desire to participate in state-of-the-art clinical trials investigating new treatments for malignant brain tumors.
Included in the BTTC are Dana Farber and MD Anderson. We spoke with oncologists at both of these institutions who were more than willing to share their expertise on Kai’s case. The oncologists and neurologists at Dana Farber, MD Anderson, Dell Children’s Medical Center, and St. Jude’s shared immense expertise while being honest and compassionate.
Kai’s surgery is over and he’s been moved back over to the PICU. The neurosurgeon was able to place a more permanent shunt as a pressure relief valve. The pediatric surgeon was able to install a port-a-cath. This is a permanent access point with a catheter into a vein near Kai’s heart. This will alleviate all of the needle sticks as IV’s should hopefully no longer be necessary.
He looks so peaceful right now. Actually sleeping (thanks to anastesia) and occasionally stretching out his arms. Amazingly, I don’t remember the last time I’ve seen him do that. Something that basic. We love seeing it now.
I don’t think we were necessarily worried about the surgery. Strange that it seems minor now. While waiting we were crying. I think about Kai’s future and I cry. I think about him here and I cry. I think about everything we’ve done since he came into our lives and I cry. The one thing I was sure of, though, is that as soon I saw him I would be smiling. Kai buddy always makes me smile.
