Day +50 | Stem Cell Transplant

Day +50

WOW! HALF WAY THERE.

Not the best way to spend the day, but honestly it could be worse.

Let’s start with Kruz..
He got blood today. We were there around four hours. His GVHD isn’t better, it’s actually spread further to his head, face and arms. We’re on steroid creams three times a day, next step is oral steroids. He’s never taken many steroids before only bc it can cause strokes in SIOD kids. I talked with them about it, they know dosages, also steroids lower immune system - If he has to have it, he has to have it. Kyle Davenport & I are praying this rash is slightly better by morning. 
Please pray with us.

Okay, let’s just post Paizlee’s update here too. You’ve probably seen the earlier post where she is puffy & the reason why - we see the nephrology (kidney) team Monday to discuss her kidneys and retaining fluid, etc - until then sis is super fluid restricted and only allowed fruit. She has her “chocolate milk” (supplena formula) for nutrition.

Okay her labs 😓 I knew, it’s just seeing it on paper isn’t fun.

Paizlee’s counts.

WBC 3.8 - okay
IGG 190- low will need IVIG infusions like kruz used to get monthly. 
Thyroid TSH - needs to start levothyroxine.
ANC- 1.92 😫 (normal 1.5 to 8.0)

**T cells**😰😰😰 (SIOD causes Tcell deficiency - these are the important cells that fight infection)
CD4’s - 267(normal 500-1500)
CD3’s- 384 (normal 500-1500)
CD8’s- 81 (normal 150-1000)

She’s at risk for infection of course. And her kidneys are progressing. 
Pray for whatever her plan is.
1: proceed with stem cell transplant with the risk of her kidneys failing during transplant...
2: wait until after Kruz’s kidney transplant and evaluate her for stem cell and leave her risk for infection pre transplant.

We have brilliant minds overseeing everything. So many different teams involved. Nothing will happen or even be talked of happening until we get her bone marrow biopsy done to see how urgent she is.

I remember in Aug 2018 Kruz’s ANC was 1.1 and he had marrow functioning at 5% by the time we got here, Paizlees ANC is 1.9- it could be go time soon.

I literally have to give it over. Trust. And wait. On Monday we should start more of a plan for Paizlee when everyone gets back in town.

Longest post ever, but that was our day.

It’s already done 🙏

Jessica Davenport