Tag: brain cancer

posts related to brain cancer and/or ATRT

200 kilometers

austin head for the cure 2014
Team Kai at Central Texas Head for the Cure 2014

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!

http://www.mychiptime.com/searchevent.php?id=8198

Chicago Altera group race
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!”. maya at atx head for the cure 2014I 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.

Head for the Cure

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.

http://events.headforthecure.org/site/TR/Events/General?team_id=1502&pg=team&fr_id=1050

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.

Thank you for Celebrating Kai!

Admittedly, I think Shawn and I are at a loss for words today. In all honesty, this morning Shawn and I were on our knees wondering if we could even do this – how do you go to a party you never thought you’d have to host? But, then we thought about Kai – this is his party and we are given the opportunity to honor him and celebrate him, so we prayed for strength to be joyful and remember his life and smile and amazing spirit. And God answered. He created a celebration that we could never have imagined and we are just absolutely overwhelmed with how many of you came to celebrate with us from near and far and the incredible support of so many of you who helped make Kai’s party so wonderful. A friend commented to us that during the celebration she heard all of these joyful noises like at a kid’s party – she saw people smiling and heard the kiddos rustling the balloons or drawing on paper and that makes Shawn and I smile. We hope/imagine that Kai was doing something similar and enjoying running around with his Thomas or Elmo balloon and making grand circles on the big sheets of paper. Kai Kai, we love you and we celebrate you today. God, thank you for the amazing life you created in Kai to share with all of us, we are forever grateful and so thankful for that joy. Thank you again to all of you for helping us along on this journey.

Thank you Doug and Amanda for creating this beautiful video celebrating Kai’s life.

Celebration for Kai – more details to follow

Thank you everyone for your prayers, encouragement, empathy, warmness, messages, food, company, hugs, tributes, and so much more. We would not be able to go through this without you and just thank you so incredibly much. Thank you for being so generous with your hearts and spirit.kai in his car seat april 2013

We wanted to let you know that we will be holding a celebration for Kai this Monday, March 24 most likely at 1:45/2:00 ish in the afternoon. We are finalizing a few details and will post the exact information later tonight. We do want to let everyone know that this will be a celebration of life, so this will be kid-friendly with ways that Kai’s friends can help celebrate him and remember him if they wish.

Thank you again for all of your support and we’ll post more information tonight.