Thursday, May 4, 2023

Day + 56 Trip to Tucson


We made it to Tucson by 10:00 am for Dr. Katsanis' Fitness Test, labs, and a monthly med through the port. It's so good to be back and see all my Tucson peeps!

NP Kyleigh wearing a Mia's Making Marrow Shirt ... awwww!!!! We love you Kyleigh. 

Up next is the fitness test study with awesome people that work in Dr. K's lab. I have done this fitness test the day I was admitted, 30 days after when I discharged, and then again just now. I'll do it again in one month, and then 3 months after that. Super cool. Also, thank you Varshini for my TS bracelet you made me! That was so thoughtful and kind, I love it! Also, thank you to Andres and Geovana for always being so kind when we do this test. They are working together to examine the effects of exercise on immune responses in pediatric and adolescent patients post bone marrow transplant. Super interesting, they share a lab with someone who is studying the effects of that similar to astronaughts in space. Elon & Kimball Musk, we need you!! Please help them with some funding because not only Dr. Katsanis curing patients like me, they are researching some really cool stuff, plus I want to see the lab and it would be so cool if we could tour it together! 

One of the fitness things I do is see how my grip strength is ... during transplant it was NOT strong. But I'm getting better every time.

Ohhhhhhh Alyssa the port ... for the fitness test you need a lot of blood for labs, besides the labs that my doctor needs, so she got a bit clogged. The nurse put alteplase on it and it sat for an hour, then it worked. But while waiting, we went up to D6W to say hi to the best nurses ever!

My Rachel wearing a Mia's Making Marrow shirt ... so cute!

MEGAN! She's got her shirt on too, ugh these girls love me and it shows. I am so thankful they were involved in my healing to get better. They are gems. But they actually have to work ... haha, like help save lives, so back down to the 2nd floor clinic to get pentamidine (once a month med for warding off a  pneumonia that transplant patients can get.) 

Yay, Alyssa the port is working, go Alyssa. This med is just an hour ... so that was quick. Then I went back up to D6W to say good bye to the BMT nurses.

We LOVE you guys!! How nice to be able to see them and give them a squeeze!

By this time it was just after 4:00 pm ... perfect timing because we have a photo shoot to get to. I was approved to do the BALD BEAUTIES PROJECT and I'm so excited. I picked Sanctuary Cove just off the freeway on the way home, which ended up working out great. Please just give them a look and read the story behind it, and if you feel led, give a donation, even a small amount.

During my transplant stay, this display of Bald Beauties Project is right by the door, and one day my photo will be up there. Then my nurses can see my beautiful face everyday, haha!!

A quick BTS (behind the scenes) ... 

Can't wait to see the actual photos ... !! Stay tuned ...


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