The Rollercoaster Ride

When we were in the hospital, we were warned that the ‘journey’ was going to be like a rollercoaster with many ups and downs. For the record, I really don’t like rollercoasters. I wanted our ride to only go up. But, as you know, that’s not what happened, unfortunately.

Living without your child here continues to be a rollercoaster ride. A few nights ago, I gave five 20-30 minute talks to various student groups at the University of Texas in Austin. I love visiting the UT students as they always so warmly welcome me and are so very respectful as I tell my ‘story’. But, it’s SO hard to open your heart up in the most vulnerable way. I’m sharing my most personal and difficult story. It’s like turning a knife in my heart every time I re-tell our story. But, I feel that it has to be done to truly connect the students with the cause. I’m not saying that I’m the world’s best speaker, but a sheet of statistics is no substitute for a personal, heart-wrenching conversation.   The students around the country have embraced me, my family, and our Foundation in such an impressive way. I will always be indebted to all of them.

Last week, I got a chance to visit with some of the brilliant pediatric oncology investigators at Seattle Children’s Hospital. We have provided a lot of support (in my opinion, at least) to their efforts, particularly in the fascinating area of immunotherapy. Their groundbreaking immunotherapy research in leukemia (“ALL”-type) has now expanded to brain and solid tissue tumors. Every time I visit, I walk out of the lab with a lot more excitement and optimism.

I also attended a fundraiser that was a really nice affair that raised over $1.3MM to fund childhood cancer research at a hospital. Amazing! These events are always uncomfortable for me, though, because, human nature what it is, the focus is always on the survivors. I get that…everyone wants hope. But, there rarely ever seems to be any recognition or honor for the brave kids who did NOT survive. They were not any less impressive! What about those of us in the room who see an empty child’s bed in our house every night? Don’t get me wrong…I want EVERY SINGLE CHILD to survive. We just don’t want our kids forgotten.

Also, if you attend one of these events, you would think that fathers don’t exist in the world of childhood cancer. Event after event focuses on the Moms and the Moms’ groups. Once again, I get it… to some degree. I realize that much, and often most, of the care for the child with cancer comes from the Moms. And, they’re amazing! But, let’s not ignore the Dads. When Andrew was in the hospital, I think it’s fair to say that Chris, Ali, and I had equal roles in the care and advocacy of Andrew. A diagnosis of childhood cancer impacts the whole family…let’s recognize the whole family. My intention is not to whine or seek attention or make event organizers feel bad. I just want to give a little peak behind the curtain…for one segment of the population. As my friend, B+ Hero Dad Dan Feltwell (and single parent) wrote one time awhile ago in a post, “Dads cry too!”

Now, back onto to the rollercoaster!

Proud DAD of Ali & Andrew