Tucson Transplant Trip

Maddy, Mia's youngest sister is going to be donating her bone marrow to Mia. We have always thought all these years that we couldn't use one of Mia's siblings because they are not a perfect 10/10 match to Mia. So we have been searching the world for an unrelated match all this time, but to this day there simply isn't a 10/10 match. ( A few close ones in Europe ... 9/10) but as an unrelated donor not ideal for transplant. Fast forward, time and technology, through covid ... families that HAD to transplant were forced to do HAPLO transplants using only a half match family member. Siblings are automatically half matches. 

Mia has 3 sisters...and MADDY wants to help save Mia's life.

(On a side note about Maddy: we made a surprise Amazon Wish List especially for Maddy if you would like to surprise her with a gift card or something for being Mia's donor, that would be so fun! She is not expecting anything, and hasn't asked ... but we know she would appreciate it <3)

With Mia not making any red blood cells ... this part was rough. They took a lot o blood for testing etc. which of course they have to do, but they took so much she almost fainted. Poor girl. So after laying down and starting some fluids, she felt better. She was fasting too because she had a bone marrow biopsy to get too under anesthesia. 

Maddy had a lot of labs as well. What a brave girl ... such a CHAMP!!! Go Maddy!

Time for Mia's bone marrow aspiration ... hopefully the next time they do this she WILL be making her own red blood cells. 

She was really cold and sedated ... they said its normal to have low blood pressure after anesthisia,

so tiltting her bed and putting her feet up helped.

Groggy and cold ... next time wear really fuzzy socks!! 

After meeting with the social worker, Mia was wheeled down to register for her ECHO & EKG.

The echo was so cool ... so neat to see her heart beating away.

Then a quick EKG.

Then after that a few X-Rays ... oh my what a long day!

Of course Mia was put in a room with Be Brave ... her tatoo on her arm says BRAVE. That's exactly what you are Mia!

Dad was there too ...

We can finally go home! Stay strong Mia ... you got this! And Maddy too ... both of you girls are so brave, kind, and caring. 

PRAYER REQUEST

- That God would guide the transplant team. 

- Prayers for Maddy as it gets closer, she has never had any major health issuses and is volunteering to do     this for her sister.

- The tranpslant works ... and Mia's body engrafts the new cells she will recieve. 

- Pray for Mom to be the hands and feet of Jesus, to help Mia with anything she needs.

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: www.customink.com as they can send shirts to anywhere.

TRALI - A Reaction to Transfusion

I had my second reaction with this blood transfusion, it was stopped short after my first unit of blood during my #234 transfusion. The doctors called it a TRALI - Transfusion Related Acute Lung Injury. It's very rare, the doctor only had seen one other reaction like this before in a cancer patient. Of course I get a reaction like this, how annoying.  If all goes well during my upcoming Bone Marrow Transplant, I won't have to worry about reactions anymore! (Please see my instagram and scroll back to April of 2022 for more information.)

Mia's 204th Blood Transfusion

Yay for feeling better - we were worried with the Corona Virus

Pandemic that Mia wouldn't be able to receive her normal

2 units of life saving blood.

BUT she was able to get 2 units of O positive blood.

Thank you LORD!!!!

She always has a good Benadryl nap in the morning - hey forced

naps are awesome! What a great way to get our body some rest.

Mia's 203rd Blood Transfusion

Feeling much better ... so thankful for whoever donated 

Mia's 2 units of life saving blood.

Time to go home...yay!

Mia's 202nd Blood Transfusion

A Long Benedryl forced nap toady!

Mia's 201st Blood Transfusion

Feeling better - not much to report other than thank goodness

for cell phones when you're in the hospital all day!