Day + 56 Trip to Tucson

 

We made it to Tucson by 10:00 am for Dr. Katsanis' Fitness Test, labs, and a monthly med through the port. It's so good to be back and see all my Tucson peeps!

NP Kyleigh wearing a Mia's Making Marrow Shirt ... awwww!!!! We love you Kyleigh. 

Up next is the fitness test study with awesome people that work in Dr. K's lab. I have done this fitness test the day I was admitted, 30 days after when I discharged, and then again just now. I'll do it again in one month, and then 3 months after that. Super cool. Also, thank you Varshini for my TS bracelet you made me! That was so thoughtful and kind, I love it! Also, thank you to Andres and Geovana for always being so kind when we do this test. They are working together to examine the effects of exercise on immune responses in pediatric and adolescent patients post bone marrow transplant. Super interesting, they share a lab with someone who is studying the effects of that similar to astronaughts in space. Elon & Kimball Musk, we need you!! Please help them with some funding because not only Dr. Katsanis curing patients like me, they are researching some really cool stuff, plus I want to see the lab and it would be so cool if we could tour it together! 

One of the fitness things I do is see how my grip strength is ... during transplant it was NOT strong. But I'm getting better every time.

Ohhhhhhh Alyssa the port ... for the fitness test you need a lot of blood for labs, besides the labs that my doctor needs, so she got a bit clogged. The nurse put alteplase on it and it sat for an hour, then it worked. But while waiting, we went up to D6W to say hi to the best nurses ever!

My Rachel wearing a Mia's Making Marrow shirt ... so cute!

MEGAN! She's got her shirt on too, ugh these girls love me and it shows. I am so thankful they were involved in my healing to get better. They are gems. But they actually have to work ... haha, like help save lives, so back down to the 2nd floor clinic to get pentamidine (once a month med for warding off a  pneumonia that transplant patients can get.) 

Yay, Alyssa the port is working, go Alyssa. This med is just an hour ... so that was quick. Then I went back up to D6W to say good bye to the BMT nurses.

We LOVE you guys!! How nice to be able to see them and give them a squeeze!

By this time it was just after 4:00 pm ... perfect timing because we have a photo shoot to get to. I was approved to do the BALD BEAUTIES PROJECT and I'm so excited. I picked Sanctuary Cove just off the freeway on the way home, which ended up working out great. Please just give them a look and read the story behind it, and if you feel led, give a donation, even a small amount.

During my transplant stay, this display of Bald Beauties Project is right by the door, and one day my photo will be up there. Then my nurses can see my beautiful face everyday, haha!!

A quick BTS (behind the scenes) ... 

Can't wait to see the actual photos ... !! Stay tuned ...

Day + 29 Doctor Katsanis Says I Can Go Home!

 

Me and the brilliant Doctor Katsanis who has cured me of Diamond Blackfan Anemia that I've struggled with for the past 20 years of my life. 

Day + 19 Getting Better!

 

Today was good, she's definitely getting better. Blood counts are going up! If you've been following Mia's journey, you know that she has not made red blood cells for the past 20 years, literally living off of people's blood donations until now. So this is pretty exciting for our family. You can see on the chart below, the + days on the left.  On Day + 16, we started to see cells grow! They are definitely growing like crazy, go Maddy's cells, engraft! Engraft! Her ANC is the measure of the number of neutrophils in the blood, they are a type of white blood cells that fight off infection. It went from 0 on day + 15 to 1940 today (+ 19) hooray!!!!! 

Science is truly amazing, the human body is so resilient. Maddy is so brave to donate her stem cells to her sister Mia, she will always be a hero to me.

Just a quick ultrasound for peace of mind, on something that had been painful and bothering Mia, but it's just something that should go away on it's own, so that is great!

You are so strong and brave Mia, everyone is so proud of you, and you have kept the best attitude and spirit out of everything that you've been through. Thank you for fighting and staying strong through this whole process. It sure helps when we have the best nurses taking such good care of you! How will they ever get us to leave?!!? We actually might get to leave the hospital soon. I'm going to admit, that will be a sad day, I will cry, for sure. Everyone is just so amazing there. What great care we have received, just another's day work ... saving lives through BMT's. It's crazy if you stop and think about it. 

Also, a huge thank you to everyone who has donated to our Go Fund Me page. Mia gets really excited thinking about being able to travel somewhere and not have to worry about getting blood transfusions every 3 weeks. It would be an epic adventure to be cured and travel somewhere fun for her, it's so good to have something to look forward to. 

Thank you so much for praying … we are watching her counts and if they continue to go up, then we will be able to leave really soon. We will see! 

Day + 15 Not a Good Day (but yay for a visitor!)

Day + 15  It's going good, and bad (not bad ... maybe sad) at the same time. All the things that are supposed to happen are happening, but some of those things that are good, are hurting Mia in the process of making her own cells (totally to be expected.) So it definitely is sad to watch because there is nothing I can do. She doesn't sleep good at night, even with melatoin, so as soon as she got up this morning, she wanted to lay on a different bed with mom. She wanted a mommy snuggle, right Mia? She's just looking any type of relief. 

The filgrastim that she's on to help stimulate the body to make white blood cells can cause your bones to ache, like bone pain, joints, and all the things, which is what we want, but it just doesn't feel good in the process. She has had something happen with her neck on the hickman side. We *think* it could be her hickman line possibly at a weird angle going up her neck or maybe touching a nerve, or maybe a muscular thing? So that's been weird. Now that is causing it to hurt when she swallows, making it difficult to eat & drink. (No, it is not mouth sores. She hasn't had any of those thus far because she's a pro at her 4x's a day mouth washes.)  Go team! She is also having just a weird time with her ... peeing. I'm just going to leave it at that but upping her fluids today I think has helped.

After this rough start to the morning, the neighbors next door brought me a huge coffee and egg bites from Starbucks, ahhhh thank you Uribe fam <3 You have no idea how much this coffee was needed. I'm so thankful for little things like that which are big things to me.

Platelets were 14 this morning (labs are done at 5:30 / 6:00 am ish every morning) so here she is getting platelets. She keeps saying how she thinks she's using up all the platelets ... but Mia girl, you are so deserving of them too. Besides, mom and dad will be sure to donate them as soon as we go home to help do our part to replenish the platelet supply. Right Dad?

Mia got another unit of blood today ... this mornings hgb was 6.9  (getting too low in my professional mom opinion) so no wonder why she feels just absolutely ... destroyed and can't keep her eyes open. She was able to keep a few bites of a Starbucks bacon gouda sandwich down, so yay! After Mia's blood transfusion was over ... she had a special surprise.

Her nurse Miss Christine (the famous one who shares the same bday and has been with her for over 20 years) came for a visit. Mia was so happy to have all her people there, Nurse Megan, Miss Christine, and Nurse Rachel. (Just missing Hannah ... but it's ok because she had a really good excuse for not being here, haha!)  

Mia got to show Miss Christine her walk route ... to the big window to see the outside world (wish Mia could go out and see the sun ... soon Mia, soon) then on to complete a lap in the Hem/Onc/BMT unit.

Way to go Mia - even 1 big lap is SO great to get the body moving. It is so important.

Back to Mia's weird neck / swallow issue ... they did an x-ray but I don't think they saw anything that could be causing that particular 'pain in the neck' area. She did end up getting 2 oxy's throughout the day (which did nothing for the pain) and at night time they are giving her some morphine. I'm just hoping she can sleep. She said she would rather take out the hickman line and get iv pokes than deal with this, it hurts that bad. So, if you are reading this, please say an extra prayer for sweet Mia that she could get some type of relief for this weird thing happening. She didn't eat dinner and hasn't drank that much water because it hurts to swallow. They did bump up her fluids so I hope that helps too. 

Let's GrOw cells ... Mia needs you now. She is struggling, but is so kind and thankful to all the staff that come in to help her. I'm so proud of her, she just needs to keep fighting through this rough part. It can only go up from here. I honestly don't know what we would do without all these kind nurses and all the staff we see on the dialy, taking such good care of sweet Mia. We are blessed to be here for sure.

Prayer Request

- To fix this neck/swallow issue that is making it difficult for her to eat and drink.

- That her cells engraft ... and start multiplying and producing ALL the cells.

- Wisdom and thankfulness for the staff taking care of Mia. <3

- That all things will work for good in God's timing, not ours.

Thank you so miuch for lifting Mia up in prayers!

Day + 14 Mehhhhh

Shout out to one of Mia's night nurses, Carla, for staying late (but early, haha 8:00 am) to get all the night things done and redo some labs. Her hgb came back at a very weird number the lab said, so we definietly had to redo it. 

Mia is just SO tired. Like beyond tired, what is a good word to describe it?  Very fatigued.  Lethargic. Just can't do anything. Blah. So after redoing the labs, platelets came back at 10, and hgb 7.4 so another bag of platelets is going now (12:30 pm) and soon to follow will be another blood transfusion.  

Mia just finished the platelet infusion, with her stuffy Lancaster that Miss Christine 

(her nurse of 20 years) gave to her many years ago. 

Now Mia has a unit of blood up and running, finishing around 4:00 pm. She feels much better and has color back in her face again. It's been a day. Not being home with her dogs and sleeping in her own bed is catching up to her. It's ok to be sad. There is a lot going on right now. Inside and out. It's to be expected. 

Mia was so overcome by the sweetest video her sister Alyssa made for her. We can't watch it without crying. Click here to watch Alyssa's video. That was really emotional, but we love it Alyssa. We just hope to see you soon! 

Thank you to everyone for continuing to pray Mia through this life transformation journey. Mia keeps saying 'it's all in God's timing.'

Day + 9 Not Feeling It

 

Mia ia not feeling good today. Her hgb dropped down from 10.0 to 9.2 and all other counts are at zero basically. (Platelets are 28) so not getting those today. If I had to guess, she may get platelets and a blood transfusion tomorrow at the rate her hgb is dropping. Just getting up and going to the bathroom is exhausting. She managed to do 1 small lap around the unit. 

She's tyring to do all the thing she's supposed to do, like mouthwashes etc. she's just behind. It's ok Mia, you have all day to do it. We still don't know why there is blood in her urine ... it's a mystery at this point, so they are testing everything to see, could be because of low platelets?? Who knows, so they are monitroing that. Unfortunately that means lots of fluids so frequent trips to the bathroom.

She is also getting cellcept today, (called Mycophenolate) an anti rejection med. Today is the first in 5 days of not getting platelets ... but possibly she will tomorrow. 

Day + 6 Off Day

Day + 6 … In Mia’s words, it was an off day. She just felt kind of weird, and I think there was just a lot going on. She got more platelets (her 3rd bag so far) and her first infusion of IVIG.  (She has had IVIG before when she was 2 years old)   She also had to de-access and re-access her port, and change all the tubing. It was just a busy day. Mia’s counts are bottoming out … WBC 0.1 ANC 0 hgb 10.5 plts 8 … I noticed when she talked that there was 2 dark spots on her tounge, that turned black. It looks like a bruise which is totally normal when you have low platelets. It's been difficult for Mia to eat, nothing sounds good, so they put her on a calorie count. Every bite matters. 

Getting platelets has been interesting, she is so used to getting red blood cells only. This is her 3rd bag of platelets so far and probably has more to go.

Rest up sweet Mia, so your body can start making it's own cells, thanks to your brave sister Maddy. Also shout out to Hannah for helping Mia ALL day long, haha. It was definitely a busy full day of all the things.

Day + 5 A Slow Day

Today (Day +5) was a good day ... no more chemo, yay! I am so thakful that all of that is over with. I've been here 2 weeks already and it has gone by SO fast. I cannot believe it. 

The tiredness comes in waves, one minute I'm up walking around, the next I'm sleeping because walking tires me out. Even showering, I get so tired.

One of the only things that even sounds good to eat is Jack n The Box tacos, haha! I haven’t eaten in almost 2 days, the doctors were like you better eat (lol) or else ... so I did. Besides today is taco Tuesday! 

This is a nice little sheet the nurses have going for me to easily see my blood counts from when I got here to now.  Super interesting. I literally have bottomed out almost, except for my hemoglobin is still ok. I've had 2 platelet infusions so far which is so crazy to think of because I've only ever recieved red blood cells my whole life, up until now. C,mon cells, grow. GO cells GO! We are waiting for you to GrOw! 

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!