Day + 74 Dr. K

 

Dr. K is back from his trip visiting his kids and running a 10K! (He literally got first place in his age division ... he literally is the best doctor ever!) 

I got to see my buddy Adrian who is kicking Leukemia's butt. We are going to get together and play basketball at the park by my house and eat ice cream soon.

Dr. K said my face is as pink as my pants ... because my hemoglobin is SO high at 13. It's a rally weird feeling to process being cured, and not needing blood transfusions. My retic is 2.7 - WILD that it is so high and holding steady after it being at zero for the past 20 years.

I'm on my way to no more ports or pokes ... someone pinch me, thank you God for this opportunity to be healed! I'm so thankful!!

Day + 60 Adrian is Doing Good!

 

My buddy Adrian is doing good too - he is recovering from his stem cell transplant battling leukemia. His family Brough me a Dutch Bros drink - thanks guys! 

I haven't seen Dr. Hanmode since before my transplant, so he's really happy with my progress, so Nicholette my NP. 

Since it's National Nurses Week - We went to Dutch Bros for my POTC nurses at Cardon Children's Medical Center ... 

Got spoil these nurses while we can!

It was my first time "OUT" getting something which was fun, just to be outside. The things we sometimes take for granted. Thank you Dutch Bros!

I went to show Adrian the Big Outside ... 

It's an outdoor / but indoor play area for kids in the hospital, how fun! I think I helped somehow to raise money for that. Go Cardon's!!! Helping kids to have fun despite what they are going through, I'm here for that! 

Day + 39 Great Doc. Appt.

I had a great Mesa clinic appointment at Banner Children's with Doctor Katsanis today. Did you know, Dr. K drives up from Tucson once or twice a month to visit all his Greater Phoenix Area patients, how nice is that?! Good thing he actually drives a Tesla (thanks Elon Musk) to get him back and forth without paying for gas! Nice. 

My labs are UP again! This is so crazy, my hemoglobin went up from 9.6 to 10.2!!! I'm literally making my own red blood cells for the first time in 20 years, pinch me. Last week my retic was 13.3 and it was 18 something today - WHAT?! Go Maddy's cells go. My retic has been m.i.a and to have it be so high on it's own, there are no words. My parents are so used to it being zero ... they get so happy/emotional seeing it so high. My platelets were even higher at 63, they are the last cells to appear after a bone marrow transplant, and they are so important. Our family didn't realize exactly how needed they are simply to be alive, until I desperately needed them. I needed them everyday for almost 2 weeks when I had ZERO counts after the radiation and chemotherapy. 

Since I had such a good doctor appointment, we canceled my Thursday clinic visit and I'll just be going once a week now. This is SO weird. But so cool at the same time, and I haven't needed a blood transfusion since April 1st. How ironic that last year on April 1st, I had  a TRALI (transfusion related acute lung injury)  and almost died. April first is no joke to me, haha.

There are still a few shirts left from my Mia's Making Marrow Campaign with the proceeds going to Doctor Katasnis' Steele Children's Research. If you would like to just make a donation to him, please feel free, but make sure you say FOR: pediatric hem / oncology division. I would be so thankful!!! Nothing would make me happier than helping Dr. K. receive money to help in research with his lab and curing kids via Haploidentical Transplants. He cured me after 20 years of living off of others peoples blood, how could I ever thank him enough?! 

Day + 32 First Clinic Appt. Back in Mesa

 

My first clinic appointment back in Mesa, AZ at Cardon Children's Medical Center, or rather Banner Specialists. It's so surreal to be back home and on the other side of transplant. 

Valencia came over from POTC to give me a hug and say hello!

So great to see Nicholette my NP that I've had for over 10 years.

She takes such good care of me, and always says and does what's best for me. 

So last Friday in the Tucson clinic, my hub was 8.1 TODAY it's 8.3

RETIC - last wek 5.5 TODAY it's 9.7 

What an Easter Miracle ... thank you God so much! I am only way to being cured. Amen!

Mia's Transfusion #162

Anddddd we're back!

She slept for 3 hours this morning...

Up and around...

Very thankful to be alive!

Banner Children's Golf Tournament - Mia The Emcee

Mia was asked to help be the Junior Emcee along side of 

Mathew Blades from the Radio...to benefit the Banner Children's

Hopsital School Program...where no kids are left behind!

It was a great day, no too hot, up in Scottsdale at the JW Mariott

Wildfire Golf Club.

Mia and her school hospital teacher, Miss Virginia <3

Mia actually drove around the golf course and thanked 

everyone for participating and donating to such a great cause!

She's actually a really good driver!

We had fun together :) 

GO Mia...

We caught up with Tyson Nash from the AZ Coyotes...

he would like to have a Be The Match Drive at the 

Coyotes to help get more cheek swabs into the registry.

Mia is a star everywhere she goes!!

We need to find these photos!

It really was a great event.

We love the JW Marriott!!

Mia and Mathew Blades doing their thing!

Working the crowd for sure...

All the teams played great!

It was hard to miss these guys out on the course...

you could see them a mile away!!

Haha!

Mia got to meet Randall McDaniel NFL hall of fame football

player turned teacher...SO cool. What a very nice guy!

Thank you to Banner Children's for allowing us to help with

fundraising efforts at the hospital we've been at for over 14 years.

We love you so much for keeping Mia alive all these years!!

VERY THANKFUL for all that you do!

Sophie's Place - Grand Opening

Mia has grown up with the Music Therapy Program 

in the hospital since she was very little.

She would request they come so she could play music

and have fun while escaping what was going on

during hospital days.

Mia and Layla jamming out...

Taking turns playing the guitar.

Drums are fun too!

The guitar got more popular thanks to 

Taylor Swift!

Mia was invited to speak a little bit about her journey

here at Cardon Children's Medical Center in the

Forever Young Zone with Steve & Barb Young.

(You might recognize him as the former QB for the 49ers)

She spoke about creating Mia's Marrow -

and her experience with music therapy.

This video is from our Instagram story...

Thanks Steve Young for helping with Sophie's Place  and 

for being so nice to Mia!

So fun!

If you haven't heard of Sophie's Place...you need to 

CLICK HERE and read about WHY it was created.

The Barton Family is absolutely amazing and breathtaking...

I truly have no words to describe their amazing work

and what they do to keep Sophie's legacy going while

helping others. No words.

Be sure to watch this video:

http://azc.cc/2nGYtSK

and read the story of this amazing family.

Sophie passed away suddenly and was a beautiful singer who sang

to children in the hospital. Sophie's brother and sister

keep her legacy going by opening Music Therapy rooms in hospitals

and Cardon Children's is the 3rd music room that has opened.

It is absolutely amazing and beyond what you can even imagine!

This is the recording studio!!

What?!?!?!?!

AMAZING

Mia jamming out...

Rockin...

Mia got to meet David O'Leary who was on the 

Amazing Race with his son, whom both

are cancer survivors. and won the all stars race in 2014!

So awesome...he said that meeting Mia

was more amazing than wining the race.

So sweet!

You can see a picture of Sophie behind Mia...

she still is there helping patients have a better treatment

in hospitals. Thank you so much to eh Barton Family who is amazing

for everything that you do for patients like Mia.

We are blessed because of you.

Mia was honored to be a part of this...

after it was over Mia said:

'I wish I could have met Sophie.'