Day -9 - Transplant

Today is actually rare disease day 2023 - I was born with Diamond Blackfan Anemia - basically my body doesn't produce any red blood cells. I've only lived these past 20 years because people donate their blood to me. Isn't that crazy? Say if people just didn't donate blood ...ever. Then I wouldn't be here. Over 300 people have saved my life for me to be here today - so I can have a chance at being cured thought this Haploidentical transplant. Thanks to my amazing Doctor, Dr. Katsanis at Diamond Children's... he will help me to be cured. Along with his amazingly smart TEAM of nurses and other staff, I'm so ready to make my own red blood cells! Let's GO!

So we started ATG today ... it's hard to explain, it's like chemo but not technically - SUPER interesting, you can read about it .. but I got the rabbit form, which is funny because I ordered carrots for lunch. Haha! I got a transfusion last Wednesday ... and today my hgb was already at 9.3 - which normally I get transfused at that level to live life. It's only been 5 days ... wut. I'm sure I will get a blood transfusion soon, this is all a lot to deal with. Probably form surgery etc. my red cells are low, and my heart rate has been high. It could be because I'm nervous too. I slept because they pre med me, so I took a long Benadryl nap. I definitely felt blah. Even my (super cute) nurses were like, she's not her bubbly self. After I was ok though.

Speaking of my nurses, how cute are they? Hannah & Rachel = double trouble! They will be with me through most of my bone marrow transplant journey. I'm so thankful for them...we took a polaroid. Love them.

This is going to be hard, but it will be worth it to come out on the other side being healed. I've waited a long time for that. Please God lay your healing hands over me, through this bone arrow transplant team. AMEN! I can feel all your prayers all the way to the hospital, thank you so much for following along my transplant journey. 

 

Day - 10 Admitted to Diamond Children's Medical Center Day

This is surreal, today is the day Mia is admitted. Pinch me! Is this happening??!?!?!

We are so thankful for this absolutely amazing hospital and staff. They are so kind and caring.

You guessed it, more labs to start the day. Mia is taking part of a super cool fitness trial, I believe she's the first one and of course Dr. K. is putting it on, he loves trials ... it is a lot to explain right now ... I'll try to explain more in detail later, but Mia did her first 'test' today and will do it, 30 days after transplant ... a few months after that etc. They are partnering with people who share a lab with doctor K and they work with astronauts, like how astronauts get atrophy from being in space too long, something like that, and how fitness helps in the recovery. So cool, maybe we will write to Elon & Kimbal Musk about this and see if Dr. K. could receive some funding to help with his trial.

Haha, let's go Mia! Of course we did on her surgery day where she couldn't have anything to eat or drink. Ok not the best idea (for next time) but she did great.

One of the exercises was to walk as fast as you can for 6 minutes. She's repping dads college sweatshirt!Mind you, she's getting her lines placed after this, so nothing to eat or drink. 

Mia signing consents to do ALL things ... it's crazy that you are an adult at 18. In situations like this they still seem so young. Even being 20 years old, as Mia is.

Prepped and ready for surgery ... getting a Port o Cath placement and a broviac that has 2 lines in it. So now she has 3 central lines which will be great for her nurses and doctors to access easily. A huge thank you to everyone who prayed for her during this today. The actual surgery itself was quite delayed, and took a little longer than usual because something happened with a vein where the catheter wanted to go in a weird direction, so he had to fix that but then everything went great. 

Dad went back to see how she was doing, she said she was definitely in pain and just sore ... but pain meds helped take that down, so that's good. They wheeled her up to her room where she will be staying for the next ... month? 6 weeks-ish? We'll see how her body does. She's so brave.

Thanks for being the best dad, DAD! He moved all her stuff up from the car ... it took so many trips but he got it all. After dinner and some Tylenol ... she's doing good. Resting, watching TV. 

Thank you so much for praying for this sweet girl! It was definitely a stressful day ... but with the surgery behind her, it'll be good. Tomorrow she will start ATG (it's like a chemo but not technically chemo. I'll probably call it chemo because it's easier.) So we are headed to bed to get ready for that in the morning. 

Prayer Request - 

- Mia has a prayer request--> for her sister Madison - that she will have a good recovery from donating her       

  bone marrow. (That will be in March.) 

- Mia's surgery site to heal ... and her body does good with all the upcoming meds.

- Always for the doctors, nurses, and team helping her.

- Mom and Dad (to really embrace God being in control.)

You got this Mia! You are so brave and beyond strong. Love you SO much!

#268 (Hopefully one of the last blood transfusions ever!)

My dad found cake to help me celebrate hopefully my last blood transfusion ... at least hopefully

in POTC where I have been getting my treatments for the past 20 years.

The staff here rocks...they have become my second family.

Lets do this...I'm ready!

Another Tucson Transplant Appt.

We had another successful day of testing in Tucson. Mia had more labs ... in the 

Diamond Children's Cancer Clinic. Then we were off down the street to the 

Banner University Cancer Clinic for a consult and practice run / measurements for

full body radiation Mia will be getting a day or 2 before the transplant.

Thank you Dr. Stea for explaining everything so well for us. We appreaciate that. Such a nie group of hlepful and caring people. 

We had a GREAT lunch at Mi Nidito (best beans ever!) Dad and Mia saw that the Pizza review guy ate here, so we had to try it too! Haha.

Waiting in between our next appoinment with pulmonary.

Super intersting, just getting a baseline of needed in the future. This lady works with

a lot of Cyctic Fibrosis patients which made us think of Josh .... YEWWWWWWW!

We made it through! Yay, now Mia can rest and relax for a week until another

transfusion in POTC in Mesa, where she usually is. Then she will be admitted 

down at Diamond Children's Fb. 27th.

It's definetly getting REAL.

Prayer Requests

1. That Mia and Maddy would remain healthy until the transplant day.

2. That Mia's port o cath surgery goes well on Monday the 27th.

3. Just prayer for the doctors and staff who will be tkaing care of Mia & Maddy's short stay down in Tucson.

4. Mom and dad to just breathe and be the best helpers like never before. 

Thank you so much for foloowing along Mia's journey. <3 

 

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.)