The Grand Experiment

February 2023
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“Wake up, mommy,” e said. “It’s a summer day!”

He said it with such joy, and added: “It’s beautiful, mommy.”

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It’s Tuesday, July 28, 2009, and it’s DAY 0. For all intensive purposes, it’s the start of a whole new life. It’s a new birthday for e. The ablative chemo has destroyed e’s bone marrow, and now we’ve given e back what he needs to survive. Without the stem cells he received today, he would not be able to recover his immune system–he die, pass… he would not survive.

But, this day is bittersweet. I have every hope that this is it: the final last-ditch effort and the start of such a long and happy life for e–free of pain (chemo, surgeries, and all the other agonies). Ever in the back of my mind I wonder though… What if it comes back? What if we really didn’t get it all?

While we say that we hope this is the final solution, it may be his last, best hope in more ways than one. e’s already been through experimental trials. And, now, he’s been through a tandem bone-marrow transplant (Denver Children’s Hospital almost wouldn’t do that, because the chance of a cure didn’t appear to be there).

Today, Dr. Q talked a little about it. He said that if e was an adult, docs would have told him to put his affairs in order–there wouldn’t have been any real thought of the long-term. But, even if e was another kid… well, I think a lot of people never thought e would get this far, or that he’d do this well.

But, we never know… Sometimes it’s the kids I thought were on the road to recovery who pass away. And, those that everyone thought were on death’s door can make miraculous recoveries.

e’s here now–he’s alive. And, as Dr. Q said, “It’s all Ethan.” e wouldn’t be in this place if he wasn’t “e”… if he wasn’t this little old man, with a smile that could melt the hardest hearts and the softest, most gentle soul. Today he was telling the nurse all about M, a little girl who’s been in the hospital since she was 2 months old (I think she’s 18 months old now). When we walk by her door, he sometimes hears her crying, and he stands at the window and tries to comfort her. She’s fascinated by him, so she’ll sometimes stop crying and wave at him and/or smile. She’s alone (her parents aren’t there), and e’s worried about the tube in her nose. He remembers what that was like, and he wanted the nurse to make her feel better…

I don’t know the stories of most of the kids. I don’t know where they’ve all come from or where they will all end up. I know the few with whom e has become connected, the kids that e asks about, and those that he worries about… This horrible disease affects them all so differently, but so much of the experience is the same. There are common threads–they’ve been through so much. How much can one body take?

One of the kids on the BMT unit told his dad the other day, “My body is telling me to quit.” His immune system is shot. The first transplant didn’t take; and he’s waiting for the second one. While he waits, he has no immune system. He’s on contact precautions (he can’t leave his room); he hasn’t been outside in months. He can’t move without pain. He’s been spiking a fever. He can’t keep any food down. And, he asked the doctors, “Why? Why didn’t it work? I did everything right. I took my meds. I did everything. Why?”

There are no easy answers.

The docs and nurses do what they can; but there’s so much that’s unknown. Will a body–already hit by so much toxicity–have enough strength/fortitude/resilience to carry the person through? Is it about spirit? Luck? Just how bad the cancer is? What is it? And WHY?

——–

Today Dr. Q said that he remembers when they were talking about e’s shot at a BMT, how they were skeptical, and how Dr. W kept coming back with: “Ethan can do it. He bounces right back.”

Right before e was supposed to go to transplant initially, scans (and the AFP tumor marker) indicated that the tumor was growing back by his left kidney. Dr. L agreed to operate, take out the spot (major surgery), and we were planning to be in Denver a week later (ready for transplant). The docs here in Colorado were skeptical…

I don’t think it always sinks in–how close we’ve come to touching death… When we’re in the midst of the fight, we just forge ahead. We do whatever w can to keep moving in the direction that makes the only possible sense, the only way anyone really feels will WORK. How can you look to the left or right–it’s about doing what is required to survive–working, breathing, and taking care of e. That’s all there is. That’s all there can be.

But, that’s when you know what you’re fighting, when you have a target to reach, a goal to attain: the cure. Now, we have waiting… and hoping–with all the love and hope that surrounds us. After a state of wellness is achieved, what then? Is the goal normalcy? What does that even mean?

——–

It’s Day 0. We’re not DONE yet. We still have to get e’s counts up above 500. We still have to find out if e’s hearing is further reduced, and what other side-effects will be immediately evident. We still have weeks and weeks to go.

Tomorrow will be Day +1, and every day will continue in the positive. It’s actually an interesting way to look at life. The cancer could come back. The likelihood would then be that they’d treat the cancer with an eye at slow it down–without real hope of stopping it… But, that’s a someday… That’s a maybe.

For now, we have a few certainties in life. We are here NOW. We are full of life and happiness. We are growing, changing, and making the most of every moment–every day. We have so much more to learn.

For good or ill, life is a grand experiment. We have a few hypotheses as to what it is or what it means. We have what we believe. We have what we know. But we also have so much more that we don’t know, can’t know… and don’t want to even guess at. And, that’s ok too. We should all be surrounded with at least a little mystery–at least, we live with that nugget of hope…

Life never comes with guarantees. It is what it is.

So it goes… so it goes…