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 + 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!

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!