Day + 12 Tired

Even after the late night blood transfusion at 10 pm last night, Mia still feels awful. Her counts have 100% bottomed out. Everything is at zero and her hgb went from 8.2 - 8.5 so basically the same to nothing. She is SO tired, she can't keep her eyes open. She tries so hard to be awake and talk but even that is a struggle. Her platelets were at 10 ... so they ordered those for the morning. 

To me, her hgb drops so fast, so it will be interesting to see what it's at tomorrow morning when they run labs. She did push herself to do 1 small lap around the unit, she pushed one of the nurses rolling chairs and used that as a walker. Bless her heart. 

C'mon Maddy's cells ... you go this, we are all praying for you!

Day + 11 Soon It'll Get Better

 

Today has been rough. I don’t ever remember seeing Mia feel this horrible (totally to be expected during these circumstances) or look so weak, fragile, & pale. Like death. It was scary for me as a mom to watch her struggle just to get out of bed, it took every ounce of energy she could even muster up, to just stand up and take a few steps to the bathroom. She couldn’t even stand to brush her teeth. Heart wrenching for sure. Her hgb was 8.2 this morning.

Nurse Rachel was Mia's nurse today and she was able to show Mia a bunch of videos from the Taylor Swift concert on opening night, so fun! That definitely brought out a few smiles.

Anothet bag of platlets today. Gosh we will have to raise awareness so that people can donate platelets (if they haven't already) as well, it's so important. She mustered up some enrgy just to take this photo. 

She was feeling so bad, could barey make it to the bathroom and back, she needs help doing the simplest of things like brushing teeth. Her heart rate was high by the end of the day, so they decided to give her 1 unit of blood.

By the time she was pre-meded with benedryl and all the things, the blood (O+) was started at about 10:00 pm at night. That's nice because she just went to sleep during that.

It (bone marrow transplant) is definitely hard to watch as a parent, there is literally nothing I can do, except try and help in smaller ways by being the hands and feet of Jesus. We know you all are praying for this sweet girl. We can still feel you lifting us up, especially with all your encouraging comments, texts, and mail being sent to the hospital.

Good night world. Let's pray that Mia's cells will start making their appearnace soon, like in the next few days! Go Maddy's cells!

Day + 10 Visitors

Mornings are really slow around here. ITs hard to get up and get moving when you have literally zero counts.Just simple things like walking to the bathroom is exhausting, and honeslty just plain living.

I couldn't fully keep my eyes open but I did listen to Pastor Chad's Sunday Service from Sun Valley Community Church online. God always knows what we need to hear, when we need to hear it.

You know what absolutely made my day? Even, made my week? A visit from my dad and sisters...my oldest sister Ashley and my youngest sister Maddy who donated her bone marrow to me. (My middle sister like me lives in Hawaii, so we were missing her big time.) 

Mia waited all day to shave her head until her sisters got there. (With the help of dad of course!)

Dad gave Mia a mohawk at first, because when could you ever do that again??

Nice mohawk Mia! But then she was like, MMMkkkkkk now shave the whole thing off, haha!

Mia also waited all day for them to get here because she knew she could only do 1 lap. It takes so much out of her.

But she did it with dad and sisters helping the whole time.

Then Mia had some tears ... she was really thankful her sisters came.

It's 100% ok to have a moment, or many moments, if you need them. Ashley helped make a TIK TOK to document their time together, and it kind of went viral. CLICK HERE to watch.

One thing for sure is that Mia is surrounded by love. Family means everything to her, and it always has.

You got this Mia! Hang in there, this is the hard part where your cells are bottoming out, so that Maddy's cells can make their home in your bone marrow. You are one tough kiddo, you can do hard things. God brought you this far, He will see it through til the end, we just have to trust His timing and His purpose.

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 + 8 Tired

Mornings are definitely slow around here. But I gotta get up and do my morning meds and mouth washes.

When you feel like you have no blood counts ... all you wanna do is sleep. Especially when they pre-med you with benedryl before you get more platelets (that's 5 now.)  I don't know what I would do without people taking the time to donate these platelets, I absolutely need them. My platelets were so low I had 2 blisters that bled on ym tounge but they are better now.

Sleeping the time away.

You guessed it, still sleeping.

For anyone into blood counts, you can see I have none. Hopefully soon I will be making (Maddy's) my own. That will be the DAY! C'mon little buddies, let's get to making theem.

SO I am starting to lose my hair. I was beginning to think it loved me so much and wanted to stay on my head, but it's slowly coming out now. 

 

Day + 7 Today was Awesome!

Today was so much better than yesterday. My platelets were low again at 12 so I got another bag. Wow I'm so thankful for people taking the time to donate platelets. What would I do without them? You need platelets to clot your blood when you bleed. My mom noticed that some of my hair was falling out on my pillow cases and on my PJ's. It was bound to happen especially after all that radiation and chemotherapy.

I'm really working getting my daily laps in around the unit. Today so far I have done 4 big laps and 1 small lap. I'm getting stronger each day, but that chemo really wiped me out on Sunday /Monday. I'm so glad to be done with that. Fitness is so important, right Dr. K?!?!?!

So I'm innocently in my room when a bunch of nurses bust in ... on their day off (Lynn & Megan) while Rachel was working, whom are all going to the Taylor Swift concert tomorrow night in Glendale. OF course I can't go, I'm getting a bone marrow transplant but I'm sure tomorrow I'll have FOMO.

They made big heads with messgaes to me ... literally bringing Taylor Swift to me! I can't even believe this, it's SO awesome! Be sure to read the messages ... they are spot on! Geez how creative is this, Lynn?!?!?!

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.