Thanksgiving Week
In support of
Joss Cook
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Joss Cook
WHAT A WEEK.
Monday feels like a blur now. We had to take Joss to the ER for the first time since her diagnosis — she’d been having awful headaches and trouble with her vision. Her counts were low, so she ended up needing her first blood transfusion. Thankfully, that went smoothly and relieved the headaches, but it was still so hard to watch her go through it.
On Tuesday morning, we met with a pediatric ophthalmologist to check her vision. Everything looked fine, which was a relief, but because she’s also been struggling with severe neuropathy, she’s now scheduled for a full brain and spine MRI next week. We’re just praying it helps us understand exactly what’s going on neurologically.
A quick note about the neuropathy: it’s a type of nerve damage that can cause pain, numbness, muscle weakness, and balance issues. It’s not unusual for kids who receive the chemo drug vincristine — which Joss had several times during her first month — but usually symptoms improve once the medication stops. In her case, they’ve only gotten worse. She can’t walk at all right now, and her fine motor skills are starting to slip. Watching her lose abilities she once had so easily is heartbreaking in a way I can’t put into words.
My family has a history of Charcot-Marie-Tooth disease, so during our ER visit on Monday, I mentioned it to her doctor — just in case there was any correlation. They sent her labs for genetic testing, and on Wednesday we got the news: Joss has previously unidentified Charcot-Marie-Tooth disease (CMT), a neuropathy-prone condition we had no idea she carried. We’ll meet with genetics next week, hoping for clarity, answers, anything. We’re praying that with intensive physical therapy she can recover fully or at least mostly, but right now everything feels so uncertain and worse than ever.
This extra diagnosis… it’s crushing. To already be walking through this two-plus-year leukemia journey, and then to learn that something meant to help her fight cancer may have triggered a hereditary condition that might have otherwise stayed silent — there really are no words. You try to tell yourself it’s just a hard season, but now it may be more! We just don’t know. Only God does.
Then Thursday night, she started vomiting and couldn’t keep anything down — not even her meds — for nearly 24 hours. So back to the ER we came last night. They kept us overnight to monitor her glucose levels. We’re still waiting to talk with the doctor and hoping we get to go home today.
And yet, despite everything, Tuesday morning we have to be right back here at 6:00 AM to begin phase 3: Blina chemo — blinatumomab, a targeted immunotherapy that uses the body's own T-cells to hunt down and destroy leukemia cells. This treatment requires her port to stay accessed 24/7 for an entire month, continuously administering chemo. This is the phase I prayed we wouldn’t have to do. One round is now considered standard of care, but because vincristine is off the table for her, the plan is three rounds. This is worrisome because there just aren’t any long-term studies yet showing whether three rounds of blina are as effective as vincristine in keeping ALL away. It may be where standard of care treatment is headed in the future… but it is terrifying to watch our little girl be one of the first.
Please continue to pray — for Joss to fully recover from this neuropathy, for this immunotherapy to be gentle on her and powerfully effective, and for us as her parents. The hits keep coming, and we are doing our best to stay standing.
Thank you for loving our girl. Thank you for lifting us up. We feel every prayer.
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