Day - 6 Transplant

 

(Photo pictured was late last night) Very early this morning was rough, not going to lie. (Technically 11:00 pm last night.) Mia felt suddenly like she had the flu after the Thiotepa was done. It wasn’t fun. She had just fallen asleep for about an hour after she had some Ativan, but had to get up and shower at 11:00 pm .. she felt super nauseous and threw up. Poor girl. It’s really hard as a parent when you can’t touch them for 48 hours because they have poison secreting out their pores onto their skin. Bless her heart … and my hat goes off to parents who have toddlers that have to go through this … I cannot imagine. After her shower she slept from 12 am - 5am … at 5am sharp up for another shower. 

Then at 8am they started a chemo called fludarabine. After that was going for an hour, they started cyc. Mia did ok with those. Definitely more on the tired side now as her hgb is now 8.6 

Even feeling crummy she did some laps around the unit. Go Mia! 

She had a surprise visitor … dad! 

Thank you dad for helping me do laps around the bone marrow unit.

You inspired me to do one extra ... haha, I beat yesterday's laps.

Thank you to my neighbor Ken for this amazing giant sized card ... Ken, EVERYONE loves it and is so impressed with how amazing it is. YOU really our did yourself with this one! I love it, perfect way to decorate my hospital door. Now everyone knows exactly where my room is, you can't miss it, haha!

Each day is getting a little tougher ... thank you so much for keeping sweet Mia in your prayers! Thank you God for all the little miracle we see along the way. We can feel your presence with us <3 

Day -7 Transplant

First of all, it snowed in Tucson in March. What?? It sure makes us feel like we are in a different state altogether, but we are really just and hour and a half from home. This was mom leaving from the Ronald McDonald House in Tucson. 

In honor of Mia receiving Rabbit ATG, we tried to surprise Dr. Katsanis by saying Mia grew rabbit ears over night, haha. It's the little things we do to make a smiles and laughs. My hgb today is 9.0. 

Here we go,  had my second day of (rabbit) ATG  over 4 hours. I did 11 laps around the unit, my hgb 

Thank you so much to Erika Lassiter (Kwincy's Mom) who gifted me $100 in Grub Hub ... she said I'd get a little tired of hospital food. I did. So buy dinner of choice for today is Chipotle. Yum.

The 2 hour Thiotepa (which is so toxic I have to shower every 6 hours for the next 48 hours) got started ... 6-8pm ish. This did not make me feel good. I felt nauseas right away, and felt like I had the flu, so I had some ativan which helped my symptoms right away. It helped watching Netflix (outer banks) for a little bit, and I tried to watch my cousin play basketball WSU vs. UW but sling kept kicking us out. So annoying Sling, do better! I fell asleep for an hour before I had to have a shower to clean my skin from he chemo ... and I felt really sick. TMI - I threw up. It was not fun. But after my shower I slept for a good 5 hours ... until my next shower at 5am. Oh man, this is tough. But so am I. 

Just over here pulling off major Eleven Vibes from stranger things. She a tough girl, I can be too.

Please keep praying for me, and if I can pray for YOU, I will.  Doug & Stef, I'm praying for Keegan's wedding, it will be awesome! 

Day -8 Transplant

Today was better than yesterday. The 4 hour rabbit ATG went better today, even though it was a bit higher of a dose today. I love these pajamas. I did 11 laps around the unit today...go team! I keep trying to move as much a s possible, especially on the good days. My hgb today is 9.8

I'm so thankful to have a good day ... in this journey there will be tough days.

Thank you so much to everyone who is praying me through this, I can feel the prayers all the way to the hospital. Not much else to report, other than I'm doing good. 

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