Day + 26 The Plan

 

The Plan is: to discharge Mia from the hospital. They gave Mia platelets at 2:00 am, redo labs ... platelets came back low again, they went only from 17 to 19 and the surgeon wanted more platelets to be able to remove the Hickman line so she could clot just in case of bleeding. Mia ended up with the same surgeon who placed the line, Dr. Leichty. He is SO great, we were so happy it ended up being him. 

Mia did great with the line removal, Thanks Dr. L. and the NP did a bone marrow biopsy at the same time. Multi tasking, love it! Mia ended up getting 3 bags of platelets in 1 day ... can we just thank platelet donors?!?! We actually had to wait in the morning because the Red Cross hadn't delivered them and the hospital was out. Thankfully they to the hospital quickly though. That could end up being really scary in a dire situation.

Somebody pinch us!! Is this really happening? We come to the hospital for 5 weeks, and leaving cured? Sheesh ... all DBA patients should come on over to Diamond Children's in Tucson for this opportunity to be cured using a Haploidentical protocol with a HALF match. Mia's relic today ... drumroll ... 2.4!!! WHAT?!?!?! Happy tears. Never in 20 years has it ever even registered above .5 ever, so for it to be that high is amazing. 

Mia is sad to leave her buddy Adrian in the hospital though, but he will be the next one to bust out of here cured!!! Stay strong Adrian ... we are praying for you and your family!

Day + 25 Photo Shoot & Shirts

 

We made:  Mia's Making Marrow Shirts in honor of Mia making her own red cells for the first time in 20 years! CLICK HERE to see what they look like! 

Platelets are already up and running this morning. 

Megan was not Mia's nurse today but that didn't stop the T-Swift dance party with a red feather boa.

We love you Megan!

Mia is doing so good, she's definitely ready to bust out of the hospital though.

Will this be Mia's last night here?? Maybe ... so let the photo begin! We got a rare time with all the day shift nurses leaving and all the night shift nurses just coming on shift.

We love you ladies so much, we just couldn't have gone through all of this without any of you!

So much LOVE for the D6West CREW <3

Mia one day I could so see you working here with all these amazing people, after you've traveled the world for a bit and experience some life outside of a hospital away from an IV pole!!

Day + 24 Slow Sunday

 

More Platelets, they were at 8 this morning. Just really tired. Almost like she just had a bone marrow transplant?? So you're waiting for your body to mass produce cells.

Day + 23 Not a Good Day

 

This morning was definitely NOT Mia's morning. She woke up with low counts, and on top of that just really wants to go sleep in a 'normal' bed, and go home, and the surgeon has been every morning for 4-5 days going on about taking the Hickman line out, but her counts are too low to even do that. I think that whole thing is getting on her last nerve. At this point she's hoping to get that line out on Tuesday during the already scheduled bone marrow aspiration.

After stopping the filgrastim, which stimulates the white cells that help fight infection, her ANC dropped as expected to 2780 (yesterday 6010) WBC 4 (yesterday 7.2) HGB 7.9 boo (yesterday 8.9) and plts were 10 (yesterday 11.) She was being so brave and such a trooper trying to hold out and not get a transfusion but she felt SO crummy, so she decided to go ahead and get 1 unit of red cells. There were lots of tears but that was the right call. Tears of just get me out of here and just being low like that doesn't help.

After getting 1 unit of red cells she was able to take a lap around the unit so that was great. She couldn't make it even out of bed til 5pm. Better late than never though!

Thank goodness for the nurses chairs around the unit for sitting breaks during walks. 

We are so thankful for these nurses who spur Mia on while doing her laps with music and awesome dance moves!

God knows to bring people into your life when you need them, for example like Traveling Nurse Raegan who after her long shift of 12 hours spent time with Mia and prayed over her. Tears. How awesome is that?! 

Thank you Lord for bringing the most special people into our lives exactly when we need them! 

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!

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 + 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!

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!

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!