Day -6 | Paizlee Davenport Stem Cell Transplant

Day -6

First let’s check out miss sass 💅

Paizlee was measured for radiation today. She gets this the day before transplant on the 13th.

She received cyclophosphamide earlier, getting a lower (& last dose) of fludarabine, and then last does of rATG.

Counts have officially dropped 😳😷 not gonna lie- my heart dropped a little looking at her labs.. good but scary. She gets worse before better...forever.

Kyle got his first GSCF shot today to start stimulating his stem cells.

Results are back from Netherlands from PK levels. We get to STOP fludarabine tomorrow and Saturday and today’s dose decreased 13.2 to 2. Thank you Dr. Alice for going above and beyond and even sending labs across seas to make sure Kruz & Paizlee do not receive anymore toxicity than they have to receive with chemo (extremely important factor since too much toxicity can cause cancer complications down the road in SIOD.)

🔬 Fun fact: The SIOD research funding we have sent provided a ‘telomere’ breakthrough that Dr. Lewis found. From that find, Dr. Alice adjusted chemo dosage with Kruz (& now Paizlee) since we now understand all SIOD children have shorter telomeres than the average child. That change in dosage helped Kruz and Paizlee (& future SIOD children) with receiving a safer conditioning regimen with even more less toxicity and less cancer risk factors like lymphoma down the road.

Isn’t it crazy? Like I say this and type this but sometimes I’m just like WOW. Or it takes someone repeating our story and the science back to me, to make me take a step back and process what’s REALLY happening. I mean I remember holding that 6 million dollar projected research paper and crying. My tears are still smeared all on the original. Just a little over three years ago there was NOTHING. The only hopeful words we were given was “we will hope they are not a severe case” .... No treatment plan, no research active at that time - THEN GOD!!!

Jeremiah 29:11 “For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.”

We have hope for the future. Thanks to you.

Jessica Davenport