Saturday, April 29, 2023

Day + 51 Adrian is Home!


My buddy Adrian got to go home from the hospital / Ronald McDonald House Tucson yesterday! YAY! He is doing so much better. Cancer sucks. 

See you at the Mesa clinic on Monday! We will race you ... haha. Fun fact, Adrian and his family lives in our old neighborhood, so we knew exactly where to go to being by his house and say hello!
You got this #AdrianStrong

Saturday, April 22, 2023

Day + 44


It's been exactly 3 weeks since my last blood transfusion that was given to me on April 1st during my BMT. ( I remember April 1st all too well because that's when I had a TRALI - a reaction to a blood transfusion that attacked my lungs, a year ago, on April 1st 2022.) 

Normally I would have gotten a blood transfusion probably yesterday, I would have been pale, tired, and lethargic, with a high heart rate from doing ... absolutely nothing. 

Today, I'm doing quite well. I still get a little nauseas in the mornings, sometimes, I've never had chemo or radiation, or any of that before, so that's to be expected. But to not be feeling, 'low' .... there are no words to describe it. Am I really free of the hospital life after 20 years with DBA???!?!?!?

Everybody should know by now that my little sister Maddy volunteered to donate her stem cells to me. All those years, and I had my cure right by my side the whole time.

I had a bone marrow aspiration back in Tucson the day I was discharged from the hospital while I stayed at the Ronald McDonald House Charities Tucson, and the results show: I am 97.53% (+5) so basically 100% engrafted as ... MADDY! What a real life superhero she is. Go Maddy's cells GO!

She saved my life, along with all the blood donors who have kept me alive for the past 20 years. How do you say thank you enough?!?!?!?! I guess to live a long and fabulous life!!

Monday, April 17, 2023

Day + 39 Great Doc. Appt.

I had a great Mesa clinic appointment at Banner Children's with Doctor Katsanis today. Did you know, Dr. K drives up from Tucson once or twice a month to visit all his Greater Phoenix Area patients, how nice is that?! Good thing he actually drives a Tesla (thanks Elon Musk) to get him back and forth without paying for gas! Nice. 

My labs are UP again! This is so crazy, my hemoglobin went up from 9.6 to 10.2!!! I'm literally making my own red blood cells for the first time in 20 years, pinch me. Last week my retic was 13.3 and it was 18 something today - WHAT?! Go Maddy's cells go. My retic has been m.i.a and to have it be so high on it's own, there are no words. My parents are so used to it being zero ... they get so happy/emotional seeing it so high. My platelets were even higher at 63, they are the last cells to appear after a bone marrow transplant, and they are so important. Our family didn't realize exactly how needed they are simply to be alive, until I desperately needed them. I needed them everyday for almost 2 weeks when I had ZERO counts after the radiation and chemotherapy. 

Since I had such a good doctor appointment, we canceled my Thursday clinic visit and I'll just be going once a week now. This is SO weird. But so cool at the same time, and I haven't needed a blood transfusion since April 1st. How ironic that last year on April 1st, I had  a TRALI (transfusion related acute lung injury)  and almost died. April first is no joke to me, haha.

There are still a few shirts left from my Mia's Making Marrow Campaign with the proceeds going to Doctor Katasnis' Steele Children's Research. If you would like to just make a donation to him, please feel free, but make sure you say FOR: pediatric hem / oncology division. I would be so thankful!!! Nothing would make me happier than helping Dr. K. receive money to help in research with his lab and curing kids via Haploidentical Transplants. He cured me after 20 years of living off of others peoples blood, how could I ever thank him enough?! 

Monday, April 10, 2023

Day + 32 First Clinic Appt. Back in Mesa


My first clinic appointment back in Mesa, AZ at Cardon Children's Medical Center, or rather Banner Specialists. It's so surreal to be back home and on the other side of transplant. 

Valencia came over from POTC to give me a hug and say hello!

So great to see Nicholette my NP that I've had for over 10 years.

She takes such good care of me, and always says and does what's best for me. 

So last Friday in the Tucson clinic, my hub was 8.1 TODAY it's 8.3

RETIC - last wek 5.5 TODAY it's 9.7 

What an Easter Miracle ... thank you God so much! I am only way to being cured. Amen!

Friday, April 7, 2023

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. 

Wednesday, April 5, 2023

Day + 27 Clinic Appt.


We made it to the clinic on the 2nd floor of the hospital, it's like a doctor's office and POTC all in one spot making it super convenient to be seen, and if you need anything like platelets, you can just get them there.

Look who came in on her day off ... to spoil Mia, Nurse Megan. We didn't get to see her when Mia got discharged so it was so nice to give her a squeeze. Thank you for the T-Swift sunglasses and HELLO, Taylor Swift Folklore Album!

Mia got platelets while in the clinic and had a nice little Benadryl nap. 

We swing by the 6th floor D6W to say to Adrian and anyone who was working ... keep going Adrian! You are getting there <3 Stay strong, I'll probably come back and say hi on Friday!

Yay for getting to see Rachel! It feels like we haven't seen you in so long, but it only been a few days, still way too long to not see you!

Tuesday, April 4, 2023

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!

Monday, April 3, 2023

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!!

Sunday, April 2, 2023

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.

Saturday, April 1, 2023

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!