PediatricDigest

PediatricDigest

Saturday, 30 March 2024

Hopeful & helpless, really hard & really alive.

Katie texted me a couple weeks back and told me that Maeve's relapse was official. All she had to say was, "Looks like CAR T," and I knew. Katie's daughter, Maeve, 2 years post-bone marrow transplant, had relapsed. Maeve was diagnosed just shy of her…
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Hopeful & helpless, really hard & really alive.

summerofsilence

March 30

Katie texted me a couple weeks back and told me that Maeve's relapse was official. All she had to say was, "Looks like CAR T," and I knew.

Katie's daughter, Maeve, 2 years post-bone marrow transplant, had relapsed. Maeve was diagnosed just shy of her 5th birthday, with the same cancer as Beau: a straightforward Acute Lymphoblastic Leukemia. It's never straightforward though, is it? She relapsed shortly after him in 2021 and received a bone marrow transplant. And now, two years later, it had failed. The cancer was back.

Our Dear Maeve.

I have written about Maeve before. Asked for prayers, manifestations, well-wishes. Actually, I wrote about her first when I explained why laying on the kitchen floor is my number one recommendation when the diagnosis hits.


In January, Beau and I drove to our local hospital for a quick lab check. He had a sinus thing he couldn't kick, so we were going to check his IgG levels. On the drive I mentioned something to Beau about needing to go to a check-up at CHOP soon and he said, "I hope I relapse so we can go back to Philly for a long time!"

I did my best not to drive straight off the road into a ditch.

"Tell me more," I replied.

"...I just loved Philly. The people are legit nuts, but the hotel beds are always so comfy and we always ate good food and it was just us, you and me."

My stomach felt inside out. Had I made up how hard that all was? Was I the only one holding the traumatic memories of Philadelphia? Mostly, I am glad that his memories of that time are positive ones, but it made me feel like I had missed out on something. Had I missed the "fun"?

I texted Katie.

"Beau just said he hopes he relapses because he loves Philly. this kid. wtf. did I miss the part where Philly was a good hang?"

"Sounds like mama did a good job shielding him from the trauma."


Philly was an impossible slog. For a long season most of our family photos looked like this:

FaceTime and Airport hand-offs. Yeah, I hadn't made it up. It was indeed that hard.


I knew what Beau meant though. All that time, together. The juxtapose. Why I also love Philly, in the weird way that cancer leaves you adoring certain parts of hell. Without Philly I wouldn't have any of these photos, and they hold some of my deepest core memories of what it means to be fully alive:


In hindsight, Philly is always both. Hopeful and helpless, really hard and really alive.


At the end of April, Katie and her husband are going to take Maeve to Philly to receive CAR T therapy at CHOP. They are going to split in half their family of 8 and leave some kids at home in South Carolina and take some kids with them, to live in a 2 bedroom apartment in downtown Philadelphia. They are going to try and make the impossible work, running two households, parenting 6 kids split across the country, while they hope and pray that the newest science can save their Maeve.

It's really too much, no matter what way you slice it.

Philly will be for them what it was for us. Hopeful and helpless, really hard and really alive.

Please help Maeve's family on this long, hard road. Will you gather around their sweet family and donate to their GoFundMe? The link is here.

If you've loved Beau, please love Maeve too. Only if we help shall all be saved.

Dear Maeve, March 2024.

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