The End is Within Reach

More than 800 days ago we were blindsided by the quiet havoc of a tiny genetic mutation: our beautiful Wes had cancer. Over the past two and a half years, he has been subjected to extraordinary, awful, life-saving treatment, which has shaped nearly every day of our lives since. Ruth was born into this chaos – born at home, at the peak of his treatment, and she’s likely spent more nights in the hospital as a guest of her brother’s than most people will in a lifetime. There are football families, and road trip families, and for nearly all of the time we’ve lived in Pennsylvania we’ve been a cancer family.

Today was monthly clinic day, his first since that weird cardiac episode recently, and it was my turn to go. Aside from the normal checkup and labs, the only thing planned was IVIG therapy, so it was bound to be uneventful. The nurse – one of his regulars – has a great rapport with him, so she turned on the charm to distract from the cart full of medical supplies she was wheeling in with her. She got his shirt off and started to pump him up about how she would bet he could even get the owie with me (dad) out of the room. So I told him I was going to go find a toy in one of the toy chests and would be right back, which I was – 10 seconds later with a new toy, lurking outside the room where he couldn’t see me. He was completely relaxed, lying back, and he allowed her to access his port – the insertion of a needle through the skin of his chest into the port-a-cath installed below – and he talked calmly the whole way through it.

He’s come so far. A four year old oughtn’t have the presence and experience and control to voluntarily submit to this. He takes yucky oral meds every day at home the same way – knowing, resigned, sometimes even upbeat so we can just get it over with and get on to the inevitable “prize”, the toy, or chocolate, or some kind of token of his accomplishment no matter how small.

After some celebration the nurse left and we had a snack and played until his doctor came by. She’s a hero and friend and we wish we could adopt her. We chatted, and I mentioned I wanted to talk about the upcoming end of treatment; she had to get to another patient’s procedure but promised to come by later to talk. His numbers came back from the lab and everything looked fantastic, so I wished her luck and we went out to the day clinic area and found a bay to set up camp in. It was quiet, only one or two other families about, and no siblings thanks to COVID restrictions. With no siblings allowed, that means for many that only one of the parents can come too; even though the current restrictions would technically allow both parents, most – like us – have no way to get child care for our other kid. So, what used to be a family affair for many is now usually one quiet parent per child, a completely different mood.

The nurse came by and again hyped Wes up over his accomplishments, getting him much-deserved cheers from the rest of the nurses on the floor. He’s a charmer, as most all of these kids are – they can’t help but be beautiful, sparkling stars even when going through things that would seemingly take the shine off the best of the rest of us. She hooked him up to the IV (a painless matter once the port access is done) and started his IVIG treatment, an infusion of donor antibodies since his body has been struggling to produce enough of his own.

We settled in for some serious Paw Patrol action – IVIG would take about two hours, and there’s not much else to do, though I did manage to find a hot cup of coffee. Eventually his doctor came back by, and I asked her to walk me through the next month’s appointment(s), which would be his last before his official EOT (end of treatment) date at the end of February.

It’s still hard to fully internalize that we’re finally looking at the end, more or less, of such a long process. There are no guarantees for the future, but for now he’s going to be done. Next month on the 10th he goes in to the clinic for a checkup, and then the following day we go to the main hospital in Philadelphia. They’ll sedate him for his last lumbar puncture and chemo and then he’ll have his port removed, signaling the end of treatment and his literal untethering from the hospital’s cybernetic body.

About two weeks after the port is removed he takes his last oral chemo. He’ll continue taking an antibiotic several times a week for some months, but will otherwise be done with any medication related to his cancer.

Initially he’ll have a monthly checkup and labs – they’ll have to draw blood from a vein the old fashioned way since his port will be gone. After six months, I think, he’ll switch to quarterly checkups; twelve more months and then he’ll start annual checkups, which will continue indefinitely throughout his life as long as he continues.

It’s hard to believe we made it this far. There’s so much more to say, but it’ll have to wait for next month.

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2 Responses

  1. Wendy McKenzie says:

    Stephanie, we couldn’t be more happy for your family. Tears of joy really. Wes is a superhero. Your all are. Thinking of you here in Long Beach my friend.

  2. Liz Rogers says:

    Crying. Again. I want to hug you all so much.