Monday, January 23, 2023

Moving Forward with Bone Marrow Transplant

Every few years we meet with a wonderful transplant doctor (Dr. K) in Tucson to go over Mia's
health etc. We've been meeting with him for almost 10 years.
As, you may know, Mia has 3 siblings ... 
... and none of them are a perfect HLA 10/10 match to Mia. 
That is why we have been so involved in working with Be The Match 
all these years to help Mia find a match through an unrelated donor that is a 10/10 match.
Still to this day, there is no one who completely matches her. 
It's been close, there's a 9/10 in Europe somewhere, but with it not being a 10/10 
we were alway told that wouldn't be the best for Mia to receive. 

Fast forward to the covid years...where people who signed up for the Be The Match
registry were choosing not to donate, and or because the hospital protocols made it so hard
for people to actually donate. We have heard through multiple sources that, that time was a mess.
Doctor's were forced to try bone marrow transplants with only half matched 
family members ... called Haploidentical Transplants
They have found that using a protocol where they use a half matched sibling 
has worked, because through covid they had to figure out something since 
people weren't or couldn't donate during that time, so basically they were forced 
into trying different protocols save lives. (Keep in mind I'm just writing this as a mom.)
I'm definitely not an expert in transplants.

Every year when we met with Dr. K. Mia's dad would always ask him,
'If it was your daughter, would you do it?'
The answer has always been no (still looking for the 10/10 match)
Until recently speaking with Dr. K, the protocol that he uses sounds so
interesting and the results have been really successful using a HAPLO with
all different types of cancers and bone marrow disorders.

I am so thankful that people take the time to donate blood through VITALANT to literally
help save Mia's life, an ongoing need for the past 20 years. What would we have done 
without YOU, blood donors? You've given us the gift of TIME, that we can never repay.
I just don't know the right words to adequately say - THANK YOU.

Mia, being an adult now, can make her own medical decisions.
It's been a long road of doctor appointments, hospital days, and feeling crummy.
After Dr. K. explained to her how recently they've had such good results, 
she's decided to go for it!! We are with you Mia every step of the way.
It will be rough for sure, but imagine on the other side...being able to live life and NOT 
have to go to the hospital every 3 weeks...what would we do not seeing the wonderful nurses
in POTC every month??? How great and life changing it will be for MIA. 

Please join us in lifting her up through prayer during this whole journey and process. 
Nothing would help us more than that.
The more people we get praying...the better!

It is getting more real as the doctor appointments are already starting to increase etc.
as there's so much to do before being admitted into the hospital.

There are other ways to help us through this time as well:

#1 - Donate Blood whenever you are available too in any state that
you live in because you will save a life just like Mia's. 

#2 - We have an Amazon List with some things that will help Mia in the hospital
and at home since she will have to be in isolation for a long period of time. 

#3 - Mia's Getting Marrow Go Fund Me - Just to help through the hospital and anything 
left over will be used for a trip for Mia ... I firmly believe that having 
something to look forward to helps SO much. 

#4 - We are looking into making some shirts as some sort of fundraiser. We will 
let you know what we come up with! 
Thinking of using: as they can send shirts to anywhere.