Monday, May 22, 2023

Day + 74 Dr. K


Dr. K is back from his trip visiting his kids and running a 10K! (He literally got first place in his age division ... he literally is the best doctor ever!) 

I got to see my buddy Adrian who is kicking Leukemia's butt. We are going to get together and play basketball at the park by my house and eat ice cream soon.

Dr. K said my face is as pink as my pants ... because my hemoglobin is SO high at 13. It's a rally weird feeling to process being cured, and not needing blood transfusions. My retic is 2.7 - WILD that it is so high and holding steady after it being at zero for the past 20 years.

I'm on my way to no more ports or pokes ... someone pinch me, thank you God for this opportunity to be healed! I'm so thankful!!

Monday, May 15, 2023

Day + 67


I had a good appointment today, Nicholette the NP brought me and Adrian a Cherry Limeade slushi ... perfect because it's getting hot in Phoenix!

HGB 13.2

Retic 2.8

I'm actually doing it! I'm making my own rd blood cells for the first time in 20 years. Well, technically they are Maddy's cells .... but still! How wild is that?! This whole BMT process will be so life changing for me especially next year. I can't wait to go on a special trip with my family and my dad (for his 50th birthday) and my 1 year post BMT transplant CELL-ebration.

Thank you to everyone who has donated to help us gt to Europe!!! I am so looking forward to this trip and will be planning it out for the next year!

Friday, May 12, 2023

Bald Beauties Project

 I received the BALD BEAUTIES PROJECT photos from the volunteer photographer Stephe, they turned out great! I felt so special and beautiful during the process. Thank you so much Maya and Stephe for a fun evening photo shoot at Sanctuary Cove, it was the perfect spot!

Monday, May 8, 2023

Day + 60 Adrian is Doing Good!


My buddy Adrian is doing good too - he is recovering from his stem cell transplant battling leukemia. His family Brough me a Dutch Bros drink - thanks guys! 

I haven't seen Dr. Hanmode since before my transplant, so he's really happy with my progress, so Nicholette my NP. 

Since it's National Nurses Week - We went to Dutch Bros for my POTC nurses at Cardon Children's Medical Center ... 

Got spoil these nurses while we can!

It was my first time "OUT" getting something which was fun, just to be outside. The things we sometimes take for granted. Thank you Dutch Bros!

I went to show Adrian the Big Outside ... 

It's an outdoor / but indoor play area for kids in the hospital, how fun! I think I helped somehow to raise money for that. Go Cardon's!!! Helping kids to have fun despite what they are going through, I'm here for that! 

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 ...

Monday, May 1, 2023

Day + 53 Monday Doctor Appointment


It's Monday ... time to check labs and see how my blood levels are doing. 

It's a wild thought to think I won't have to do this so much by next year. I can actually live a normal life and get on with ... my life. That is just surreal to me.

1               3   

My hemoglobin is 13.1    .....     what is this?!? Never has my hgb been this high on my OWN before. My mom tried to donate platelets last week but couldn't because her hemoglobin was only 12.1 (you have to be 12.5 to donate) so I'm higher than her?!?! Hahahhhahhahahhhhaa ... what.

My platelets are basically back to normal at 180 ... they were the last cells to appear and grow. I had about maybe 20ish or so platelet infusions back in the hospital, but now my body is producing them just fine by itself. YAY!

My retic is coming down now and leveling off ... yay. It was 4. something. My whole life this number has been zero ... since I never have made my own red blood cells before. GO Maddy's cells. Wow, she volunteered to give me this new life so I could live without blood transfusions. Thank you Maddy.

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