When your little kid gets diagnosed with cancer, you learn a lot of stuff, and quickly. There are suddenly experts everywhere, mostly of the medical variety, but not exclusively. Psychologists and child life coaches and chaplains and insurance specialists are there to offer advice, share some of the burden, offer up a hug and just provide some distractions. You also meet parents who are in shoes similar to yours. Through evening coffee breaks in the lounge, regular visits to the playroom and apologies to the family on the other side of the curtain for the late night bathroom trips, there's a certain bonding that takes place on the oncology floor. Along the way, your kid becomes friends with the kids of some those parents. The experts will tell you about all of those things. But here's what the experts don't tell you -- your kid will likely become friends with someone who eventually dies. As far as we've come with pediatric cancer (better than 80% survival rate), one in five or six or 10 won't make it. Last summer, Theo met a young boy at Okizu, a camp in the northeast part of California that's set up to help families effected by childhood cancer. It's a kid's outdoor paradise, from the swimming, fishing and boating to the ropes course and S'mores after dinner. Theo, Hugo, Anne and I attended one of the several family weekends they host each year. We stayed on bunk beds in a cabin almost in the woods. The second morning at the camp, on my way to the bathroom to brush my teeth, I saw Theo outside playing tetherball with a boy who had long reddish hair. He said his name was Leif. They'd apparently just met. It was a rough game. Theo and Leif somehow managed to turn tetherball into a contact sport. They became fast friends and were inseparable for the next two days, until it was time to head home.
Back in the East Bay, Theo and Leif hung out a couple times. Every parent knows the joyous feeling of watching their kid make a new friend, and this one felt a little extra special because of the bond that the parents speak about, though the kids pretty much never do. Theo and Leif met in September. Two months later, Leif received a crushing diagnosis. He had secondary leukemia. Pediatric leukemia of any sort is awful. We knew all about that, having been through well over a year of treatment (at that point) for Theo. But all along, once we got through the traumatic first 72 hours, Theo's prognosis for full recovery has been good. Secondary leukemia is a much different story. It's caused by the treatment for a previous and completely separate cancer. In Leif's case, the initial disease was Ewing's sarcoma from over five years earlier, when he was just 2. A side effect from the chemo for his Ewing's treatment was leukemia. It happens in a small, but material, number of cases. It's unimaginably cruel, and the odds of beating it are low. Kids' bodies are resilient but they have their limits. Leif was treated at Oakland Children's on the same floor where Theo spent what felt like so many nights in 2017. But Leif was there much longer, as the oncologists tried every cocktail of drugs available in an effort to beat the leukemia into remission for long enough to make a potential bone marrow transplant viable and give Leif a fighting chance. Leif died last week. Those of us following his parents' updates knew it was coming, but that awareness did nothing to soften the heartbreak. He was a special kid. Two cancers by age 7 is an impossible thing to get your head around. Yet, at least based on the videos we saw, he was full of life almost until the end. I don't have any comforting words to offer Leif's parents. Just hugs. Theo sort of understands what happened, but not entirely. Which makes him like the rest of us. Sometimes there really are no experts.
4 Comments
Karen Sherman
8/20/2019 06:05:19 am
Hugs to you and all who know Leif .May his memory always be a blessing...
Reply
8/20/2019 11:57:22 am
So well put, and so sad. Every day we wonder what the side effects might be of Brady's chemo treatments, and that worry doesn't end at a certain age. Hang in there, and enjoy every moment you have.
Reply
Tami
8/20/2019 09:54:01 pm
❤️
Reply
Catherine
3/14/2020 07:42:05 pm
Unimaginable. Ari, I think about you, your family, and Theo all the time especially now as I’m expecting my first child, a boy! (Yeah, I know. Old AF but still be a MILF). This family, your family are in my 💖 and prayers. It’s unimaginable
Reply
Leave a Reply. |
Ari and AnneUpdates on how Theo (our treasure) is progressing |