HuCART: Month 9 results

Earlier this month Beaudin and I traveled to CHOP for his 9-month post HuCART testing. It’s been impossible to write about. Not because the trip to Philly was that out of the ordinary, but because the weeks leading up to it were surreal. In late April dear Kamden passed away, and then a week later we received the heartbreaking news that our sweet Emily had died.

If you have been here a while, you know Emily.

There is much more I will write about sweet Emily. Joshua and I had the heart breaking honor to attend her memorial service in Mississippi. There will never be enough words to put to the weekend we spent with her family. But I will try. Who knows when as even these few sentence have me weeping. It is all so very hard.

We returned from Mississippi late Sunday and were meant to depart for Philly Tuesday morning. Tuesday morning was also Kamden’s memorial. So as we drove to the airport, rode the shuttle from the parking lot, then waited in security, Beaudin and I watched the live-stream of Kam’s service. Beau had one ear bud, and I the other, and any time he got far enough from me for his ear bud to cut out he’d shout, “Mom! Pause it!”

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When we arrived in Philly we got an Uber to the hotel and Beaudin decided that he felt like Chinese food. Given his appetite is still mediocre, at best, I was glad to oblige. We walked a couple blocks to a dim sum place and proceeded to order way too much delicious food.

Duck? Sure.

Stir fried rice with pork? Sure.

Dumplings? Sure.

Fried Green Beans? Sure.

A giant Sprite? Sure.

It’s hard to say “no” to anything when I can taste fresh on my tongue the sour heartbreak of how this all could end.

Order whatever you want Beau, this is living.

On the way home from dim sum, we stopped for ice cream. Tuesday, May 10th, happened to be Emily’s birthday and in honor of her, Lorin asked all friends and family to enjoy a sweet treat. Beau and I walked the few blocks back to the hotel and I cried slow, soft tears as I told him about our weekend celebrating and mourning sweet Emily.

“Mom, this seems like a good way to celebrate.”

“The ice cream?”

“Yeah, and talking about her. I think she’d like it, I mean the ice cream. She’d probably just sad she can’t have some too.”

“No tears in heaven Beau,” I smiled, connecting him back to conversation we’d had earlier in the week about what the whole heaven thing was about anyhow.

I took this picture of us for Lorin, Emily’s mom, but I couldn’t send it. We were in Philly, where we’d met them, surviving. It bothered me more than I worried it would bother her. It was all too much.

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On the way to the hospital the next morning Beaudin decided that he wanted to try to do an IV, instead of having his port accessed. This was a really big deal because Beaudin has not been willing to get an IV since some very traumatic IV placements back in December 2018. Turns out when you are on day 14 of a 103+fever, riddled with leukemia and severely dehydrated, an IV placement is anything but simple. I’ve written about how hard those placements were, and the fear of needles that developed.

We have spoken a couple times about getting an IV, in place of port access, as a stepping stone to eventual port removal, but he has never felt ready. And by never felt ready I mean to communicate that the conversation usually started with me casually explaining IV details and him immediately crying, holding his clenched fists together to just below his chin and shaking. At our April labs visit in Denver we had our favorite child life teammate, Andrea, come and help talk to Beau about the IV dynamics. After examining all the parts and pieces of an IV placement kit, they decided together that a hand IV would be something Beau was willing to try. I had thought he would wait until we were back in Denver to make the attempt, but in the Uber at 7am on a Wednesday, crossing over the Skyukill, he assured me that, “Philly is the place for this, mom.”

And just like that they put an IV in his hand and he barely flinched. I almost missed it, caught in conversation with our nurse. When I looked over it was placed and he was back to his iPad. It was as though there wasn’t 3 years of trauma dismantled in a single needle poke.

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After our visit we had 6 hours to spare and so we found our way back to Beau’s favorite run-down putt putt place at Franklin Square. I played the first 18 holes and then just watched as Beaudin played every hole again a handful of times. Normally, LP results are up by the time we get on the plane, so I casually refreshed the MyCHOP webpage every 2-3 minutes all afternoon.

After putt putt, we decided to check out the Philadelphia Museum of Illusions. And then we enjoyed street tacos inside the Bourse Food Hall. Eventually we found our way back to the airport and onto a flight home, a quick 36-hour trip.

We boarded the plane and no results had yielded.

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Results trickled in slower than normal which only mattered because our entire month to date had been thick with the realities of how terribly pediatric cancer could end and thus the wait seemed particularly harder than normal. Results that normally return day of, didn’t come in until 3 days later. And more specific results that normally return in 3 days didn’t return until the following week. Nothing like a whole lot of time to wait and wonder if you entire life is about to blow to pieces.

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Eventually we received all the results:

It’s all clear. All good. All what we want.

No leukemia in his spinal fluid.

No leukemia in his bone marrow, neither by MRD or NGS.

And as always, each time a result came in, I wept and realized how heavy it was to hold your child’s life in your hands.

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Clear results, another quarter where we can just check monthly labs and live our life like…normal. WHAT LUCK.

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When Joshua and I boarded the plane to come back from Mississippi after Emily’s service, I boarded a couple of groups ahead of him (oh the perks of all this Philly travel….) I waited for him and the rest of the passengers to board and quickly checked-in on Messenger with another family who was waiting for 15 month post-HuCART results. This family had gone before both Emily and Beau and been a beacon for all of us. I always wait eagerly for their quarterly updates. Because just like the heartbreak of one family, is a heartbreak for us all- the same goes for a chance at survival. If Knox could do it, maybe so could Beau. I knew they would have had their results by now, so was concerned why they hadn’t announced them (on FB) as they normally did. I asked how things were.

“All is still clear and negative…I wanted to post it, but chose not to in light of Emily’s passing…”

Joshua eventually boarded and found me staring out the window with tears streaming down my face.

How hard it is to hold our own good news inside of the broken hearts we have. Our friends and family want to shout and celebrate when we get the all clear, but we just stare at the results and try to make sense of the unimaginable. We hold our friends hand as they burry their daughter and then hear that our son is whole. It’s a lot.

We are both thankful and relieved that Beaudin’s results are clear, and we are utterly heartbroken over Emily.

It’s the hardest both/and yet.

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I am thankful for all of you the can celebrate, on our behalf, Beau’s clear results. We are thankful and grateful, and just really tired. We are excited for a summer filled with baseball, travel, and soaking in the sunshine. We are present to the fact that this, this is living.

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