Wednesday, March 29, 2023

Day + 20 Photo Shoot


Morning Labs have been moved to 8:30 am now ... instead of 5:30 / 6:00 am. Everything has to be timed around certain medications etc. 

A lot of my meds have been switched to oral, instead of IV, so that means I can go home soon. How crazy is that?!

Platelets have been crucial during our time here. Who knew they were so important? It's just so different because we are so used to just receiving red blood cells for 20 years. We are so thankful for people who take the time to donate platelets, Mia has relied on those as well. 

Look at us in our BMT shirts ... Rachel had one when we first got here, and we loved them so we ordered one for Megan & Hannah asap. It inspired us to make our own shirts as well ... stay tuned for that! 

What am I going to do without these there when I go home?!!?

They crack me up and make me laugh ... laughter is the best medicine after all. 

I'm almost to the other side of my BMT. It's such a wild and crazy thought!

Tuesday, March 28, 2023

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! 

Monday, March 27, 2023

Day + 18 Rough Morning


Mia had a rough morning, but that's ok. Things tend to hurt over night, like achy bones from the filgrastim med, and lack of sleep doesn't help either. It's ok to feel not ok. We all have those moments. 

Dad came and encouraged Mia to get a lap in, go Mia. It's so important to get up and move, even a little bit. One lap at a time. 

It's hard to watch your kiddo suffer when there is nothing you can do about it. In times like this the only thing to do is pray.

Thanks Matt for praying for Mia and making your cute little videos. She loves them so much!

Sunday, March 26, 2023

Day + 17 My Dad Took My Mom Out


I'm still getting cards in the mail, so nice of everyone, thank you so much!

When I first got here, nurse Rachel had the coolest BMT shirt from when she was a travel nurse, so we ordered some for a few of the nurses who are doing BMT's here at Diamond Children's. Now they can all match, haha and me too! 

My dad came for a visit, and he stole my mom aways and took her out to dinner since she has been at the hospital for a month straight tomorrow. I assured them I would be fine. 

Saturday, March 25, 2023

Day + 16 Walking With Adrian


Low platelet bloody noses are not fun. When you are low on platelets it's hard to stop the bleeding. Platelets clot your blood, so when you don't have any, a cut or scrape just keeps on bleeding.

Eventually the bleeding stopped but it took a while. Makes you realize just how important platelets are and you need them just as much as donated blood.

I went for a walk around the halls with my next door buddy Adrian. He is so brave and is fighting Leukemia. #AdrianStrong 

What are the chances that both of our families live in Chandler?? haha!

I have to shower everyday and the nurses come in and change the sheets and wipe down the bed ... every ... single ... day. So fresh, so clean!

Thank you Jordan & Rachel for taking care of me today, and Kylie is the night nurse just coming for the late night shift. What would I do without all them taking care of me?!?!? 

Nurse Cooper has also been a big help in taking care of me during my time here. Everyone is beyond nice, helpful, and kind. Way to go Diamond Children's!

Friday, March 24, 2023

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!

Thursday, March 23, 2023

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.'

Wednesday, March 22, 2023

Day + 13 Relief

After a night of not sleeping the greatest, and just a crummy few days of no counts, Mia got relief in the form of platelets, a blood transfusion, and a visit from her cousin Jabe & Nurse Rachel (On her day off!) All she can do is sleep, her sleep schedule is a bit off ... so she has been sleeping better during the day.

Rest up sweet Mia, so your body can use all your energy to make ALL the cells.

Mia had a VERY special surprise, dad secretly drove down Mia's cousin Jabe, as he was visiting nearby in the Scottsdale area. Ahhhh, what a special time, she absolutely loves her cousin so much. 

Click here / Jabe Visits Mia ... to see the cutest Tik Tok video of her surprise!

During this time, Mia recieved Platelets & a Blood transfusion. Her platelets were at 10 and hgb at 7.8. Still hoping & praying to see some cells appear very soon.

Sweet nurse Rachel came in on her day off to visit <3 God really knows the people to put in your path. We both just can't say that enough.

Dad and Jabe helped & motivated Mia to get 1 (small) lap in around the unit ... let's go!

If you wondering why Jabe is so tall, it's because he is. Mia is beyond proud of her cousin who plays basketball for the Washington State University (WSU) #GoCougs  He is number 3 <3
Can you believe Jabe and Mia were born in the same year and only 7 months apart? Haha. He got Granpdpa Dennis' tall genes (Mia did not lol.) 

Family is SO important, and visits like this refreshes the soul.

Dad was also there to lend a helping hand. Go dad!

Thank you Jabe for taking the time to visit, we love you so much!

One of the night nurses, sweet Julie, got these amazing Bundt Cakes for Mia's transplant day party, which Madison absolutley loved. So a special delivery is headed your way Maddy!

Sorry, Jabe and I ate one, haha! They are so yummy :)

Having no counts makes you beyond exhausted. So we did all the going to bed things, like brush teeth in the bed becasue she can't stand for that long. Ugh, this will pass Mia, just keep on hanging on, hour by hour, minute by minute.