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