Andrew’s Legacy
Andrew approached everything with the diplomacy of a charismatic world leader, the strategy of a professional chess player and often displayed the fiery of a hurricane while somehow still maintaining the whimsy of a 4-year-old boy. That description collectively summarizes how Andrew approached cancer.
After an excruciatingly long and difficult diagnosis, treatment began. Andrew was up for the challenge. At his strongest, he treated cancer like one of the many adventures he would take with his mom, brother and Mom’s Club Friends during the day. At his weakest he treated cancer like a box to check before returning to playing or something of his immediate choosing.
Andrew lived life loud and with absolute exuberance. His laugh would fill the rooms and your soul in a way that would simply make you happy and proud to have this little man in your life.
Our Donation Story
There’s a lot of things I struggle to remember. Where I left my car keys; if I submitted the latest report at work and nearly every word of every conversation I had with Andrew’s oncologist except the very last. I found myself in the bathroom of a hotel adjacent to Children’s Hospital and she said “We will not be able to cure your son.” The same boy that was actively laughing, playing with his little brother, just feet away from me…would be gone… 55 days later.
EVERY cancer story has one thing in common. There is a point when you think you will beat it, win, and be cured. But, there is also a point in SOME cancer stories when you know you will lose.
I believe that what you do after you receive this news also defines you.
Vicki did what any perfectly love filled mom would do…denied accepting Andrew’s decline. In response, Andrew lived life. Hard. And surrounded by love. For 55 full days. I did what a lot of dad’s would do and focused on the practical. In practice, that looks really weird. For almost a month, Andrew was simultaneously taking chemo treatments, going to physical therapy, playing with friends while also receiving palliative and hospice care.
Prior to recurrence and leading up to his death, as courage allowed, we would briefly flirt with the inevitable and ask tough questions. One such question was about organ and tissue donation. When we asked, we thought of other struggling families, maybe waiting for a heart or lung transplant for their own sick child. We would learn most traditional donation methods you can think of are not possible for cancer patients. There are too many unknowns to what cancer and more directly, cancer treatments do to the body to make for safe donation for potential recipients. It was devastating to think our son would not have lasting legacy and couldn’t help others through his loss.
Everyone that has been through the loss of a child seeks to find answers and purpose. We were no different. When our oncologist first mentioned post-mortem brain tissue donation, it took our breath away. At the time, Andrew was in remission so we were hopeful. Still, we knew the odds were just not great. Collectively, we filed this information deep in our psyche for about 6 months until after regression and in the days leading to his passing. Then, things got real, real fast.
- 48 hours before he passed, at about 11pm, Andrew received the Catholic Sacrament of Last Rites.
- 45 hours before he died, I would excuse myself from the bedroom where he was resting with his mom and make a call that would set into motion his postmortem brain donation.
- Less than an hour after he died, I would carry him from our bedroom to the garage where a hearse was waiting.
- Over the next 12 hours, with our consent, but with no direct interaction – a Tissue Navigator would be flown from San Francisco, to Minneapolis, rent a car to drive the 35 miles to our town where they would retrieve Andrew’s brain and fly to Children’s Hospital of Philadelphia where it would be replicated for research.
The next afternoon, we would see our Andrewboy one last time. Our beautiful boy looked just the same as when he left us. It would then take us longer to plan and hold his funeral than the entire donation process.
We are told this is something special; that Andrew, even in his death is at work. Above all, Andrew was deliberately curious and voraciously determined. During the quiet of the night, after the oncology appointments, physical therapy, and the last pills were taken, we would pray and plea with God. Often, we would find ourselves saying “Andrew is doing his part; now it’s left to the work of God and science.
I close this by saying I believe that is exactly what is happening. Andrew did and in many ways is STILL doing his part. And now, skillful researchers, oncologists and so many others will do THEIR part. And knowing that makes us a little less sad and so damn proud of our son.
