Day -13 | Stem Cell Transplant
What’s worse than not having a cure?
Not having a treatment plan.
That’s what we were faced with May 2016. Only sent home with a piece of paper with scary paragraphs and clinging to the only hope that maybe our children weren’t a severe case.
Today while I was in P’s appt, Kyle called and said he was super pleased with how everything is going, in research and in the hospital. A lady within the team came in and explained she was a reason the transplant was held back a week. (And insurance 🙄)
She wanted a full body MRI and she didn’t want to be rushed shipping lab samples to Europe. She explained she’s super pleased with how the entire team has put this top priority, along with SIOD research.
What’s happening is they are putting together a very effective treatment plan for SIOD diagnoses. Instead of families heading home with a devastating paper, they will have HOPE!!! They will have a place to immediately come and have the medical professionals most familiar with SIOD- They will have hope for a cure from the funding YOU send - They will have hope for their child to live & a treatment plan, not just managing symptoms as they come.
You see- this stem cell is HUGE for an SIOD child. It’s HUGE if you can have it BEFORE your kidney completely fail so after you can administer the drug to stop the nephrotic syndrome before it affects the kidneys! Their hypothesis is if we can get a stem cell transplant done before the kidneys become affected, the doctors could (hypothetically) save the kidneys with the right steroid medication. (This is what we all hope can happen for Paizlee)
Of course future families will have a very long and trying process but they would have a plan...
The journey is anything but easy.
God is using my children in a mighty way.
But I had to Had to share that. Happens to land on lucky -13 day! 😉 (my number)
So all that 😎
Update on Kruz: Not much today just had a his dressings changed around his ports. Tomorrow is a breathing test at 8:00 am! He’s happy papa is here and put in a grocery run request.
Thank you all for keeping up with my babies. We truly appreciate you 💛💛💛💛