Monday, February 27, 2017

Mia's 152 Blood Transfusion

Mia was 'poked' the next day for a type and cross after the
visit to Tucson and speaking to the bone marrow doctor.
Lot's of doctor appointments are involved with getting Mia's
care managed. Thank GOODNESS for health care and kind 
nurses and doctors who love what they do.

Mia's #152 before mom and dads 20th Anniversary trip to Cancun.
When dad takes Mia, they take naps and eat lots of food!

Thursday, February 16, 2017

Mia's Type

Well, it's a long story...but after a look in the Be The Match
Regisrty (world wide) Mia does NOT have a perfect 10/10 match.
There was one person, a 29 year old somewhere from Europe who
was the closest match at a 9/10.
Not close enough for us to risk a transplant though.
If you know Mia at all, and how she's an Anglophile - 
this made her so happy! We are not sure it's exactly from 
England but we are pretending, since her Grannie and all her
family are from there.
*On a side note, if Mia ever gets to transplant, we will be taking her on a special trip to 
England before all the transplant stuff would happen.

There is another option for transplant called a Haploidentical transplant
which would use one of her sisters as a half match.
We drove down to Diamond Children's in Tucson had 2 of Mia's sisters
tested as well as mom and dad. 

Mia was the only one NOT poked weird is that?!
But she was a great hand holder!

You can do it Madison...she was a bit nervous
but Mia does this all the time, so Madison was really brave just
like her sissy Mia.

Way to go Madison!

Dads turn...he donates blood all the he's used to pokes.

Mia's feeling left out with no poke, but don't you worry Mia,
you'll be poked soon enough!!

I'm so proud of these girls being there for Mia.

Wednesday, February 8, 2017

Be The Match Meeting

We got the chance to sit in on a Be The Match meeting
for the 'West' side of the country...the Wild West!
It was awesome being able to hear stories and 
have Mia share her story of how she needs a match
as well. They are looking for you Mia!
We also got to be present as our very own AZ
representative WON - for Be The Match
Rep of the year!! Ahhh yeah!
We are so proud of you Aubrie.

It was really special that
Mia and Stephen (a bone marrow transplant survivor)
got to be a part of this as well.

We sure love being a part of crazy groups!

Thank you Be the Match for all that you do for patients
who need life saving transplants to survive.

Friday, February 3, 2017

Mia's Yearly MRI

Prayer request would be greatly appreciated...
It's that time of year...Mia's yearly T2* MRI of her heart and liver
to see how much iron has deposited on her organs from all the 
blood transfusions. (The very thing that saves her life ... ironically slowly
damages your organs.) Did you know, heart failure due to myocardial 
iron overload remains the leading cause of death in patients with 
transfusion dépendant anemias.
Thank goodness we have a medicine called Exjade
that Mia takes every night, (she hates if you see her tell her she's 
awesome for taking it!)
It helps chelate or get rid of the extra iron that builds up in
her organs to prevent iron overload.
We always hope for the same or lower numbers from her MRI
scans (we want LOW) and we won't find out for a few weeks.
We know that God is in control.
You got this Mia, courage!

Sweet went by fast. 
They put her to sleep but next year we will try it awake!

We are SO thankful for super kind nurses who just love
on our kids...speaking of a mom with a child with a life
threatening illness. Thank you for taking care of Mia!

Wednesday, February 1, 2017

Be The Match - Gammage ASU

Born to perform!
We had the chance to go to Gammage at ASU to watch an
illusionist called: What is the Maze?
We had a must try and see this show if it comes
to your town! He has recovered from a bone marrow transplant and
invites  Be The Match to be there at the end of his shows.
We went to help out.

Mia and Aubrey went on stage and briefly shared Mia's story...
and the best part is, that 501 students registered for 
Be The Match!! Yay, it was awesome!

Watch a little bit about:

What is the Maze

Click Here to listen to Jim Munore and his life
saving bone marrow transplant!