Addy's Fight With Leukemia

03/10/2026

Addy did so good today!!
She had her clinic bestie nurse Alex and her “professional sprayer” nurse Sam on the job. We went up on needle size, and though there were a few tears, she said she didn’t even feel it (thanks Sam)! Grabbed some lunch 🌮 and went straight to PT. She did some walking, steps, basketball, and then took a stroll to see the geese. Now we’re back home, tackling some schoolwork. 2 more weeks of the infusion to go, though we still don’t know what’s the plan for after it’s done. Keep those prayers coming!

03/09/2026

Its Time!!!
Addy will be needing blood and lots of platelet transfusions with her upcoming transplant, so now’s the time to donate. You can go to any Blood Center location listed in the flyer. Addy is O+, but if you aren’t a match, you can still donate and say replacement for Adalyn Jensen.

03/06/2026

Not how I wanted to spend the night, but here we are! Addy’s pump alarmed earlier with an occlusion alert. We called the pump tech and we were able to fix it from home. 3hrs later, it alarmed again with air in the line, which is not fixable at home, so off to Children’s we went! We’ll be here overnight, since we were coming back tomorrow morning for a bag change anyway. Of course I forgot so many things, rushing to get here. Thankfully it’s only for the night, and we’ll be heading home tomorrow some time. Doesn’t she look thrilled!!

03/03/2026

Needle change went…..
Just as expected, chaotic!!! I can’t blame her, as I would be kicking and screaming if someone was trying to stick a needle in my chest without any numbing cream (the freeze spray helped). Though it wasn’t her favorite clinic nurse Alex, Sophia did an amazing job! There were lots of tears, but once it was done, she was fine.
Donor is still in question right now. It’s all about timing at this point, and how soon the donor cells can be collected. The hope is to roll into transplant once this infusion is done on 3/24, but we have to wait for the donor. Hope to have more information when we go back Friday.


https://www.gofundme.com/f/hope-and-healing-for-addys-transplant-journey

03/03/2026

So many prayers for this angel warrior!!

03/02/2026

Addy is doing great!!
We go tomorrow for a needle change and bloodwork. She’s not thrilled about it, since she can’t have numbing cream, but they can use freeze spray to alleviate some of the discomfort. Hopefully we will have an idea of what’s to come after this 28 days infusion is done. Will we start BMT preparations immediately? Do another bag of Blinatumomab? Lots of questions I’m hoping to have answered tomorrow. I’m just happy that she’s feeling good, and still spunky as ever. Here’s a look at her pump. It is a blessing that she’s able to receive treatment from the comfort of her bedroom.

03/02/2026

Prayers needed for another fighter!! 🎗️🧡

Miller, his team, Kevin and I have discussed and agreed to move to primarily comfort care.

He is in respiratory failure. His body is tired, and he has suffered enough.

We don’t know how much time we have. It could be days. It could be longer.

What I do know is that my son has fought harder and longer than anyone I have ever seen. He still wants to live. He is not giving up. He has endured more than most people could survive. I am in absolute awe of him.

Now our focus shifts to his peace.

Miller’s comfort is at the forefront of every conversation. We will continue to follow his lead — listening to him, honoring him, making sure he feels safe and heard.

No more pushing. No more trying to make his body do something it cannot do. Just comfort. Just love.

He asked for his dad and Bubba. They are on their way. He also wanted Gamma “if it’s not too much to ask” 😭 Koko’s flight was delayed so she is back here with us at St. Jude now. Miller is not alone. We are surrounding him with everything we have.

We are grateful to be surrounded by love. ❤️

Please give us grace and be patient as we face what I imagine will be the hardest days yet. 💙🧡

📸: watching his Sooners last night ❤️‍🩹

02/28/2026

Peace out ✌🏻
Just got home from Children’s with CFA in hand of course. As I’m 1/2 way on the bridge, the hospital called Jon to say we left a bag of meds (mostly mine) in the room 😩 thankfully, Jon got stuck in traffic and hadn’t made it to the bridge yet, so back he went to retrieve it. Addy and I are looking forward to sleeping in our own beds tonight.

02/26/2026

Addy Update!!
She’s doing a lot better today! She has a small appetite, no more nausea and she’s almost 24hrs fever free (hope I’m not jinxing that). Her bone density test showed that’s she’s still at an increased risk of fracture, plus the Blina is giving her bone pain. They gave her an infusion of Reclast to strengthen her bones, BUT a side effect could bring on another fever. As long as she doesn’t spike again, we’ll be going home after her bag change tomorrow. Praying for a cool, fever-free night, so my girl can go home!!
TBT, Addy with her tiny pigtails 🩷

02/25/2026

It was expected, but it never gets easy.
Addy spiked a fever of 102 and started throwing up around 4am. We did all the cultures, but because she has the continuous infusion, she needed an IV placed for her antibiotics. Antibiotics done ✔️, Benadryl for nausea done ✔️ now getting Tylenol for her fever. I finally got her calm, an ice pack on her arm, and she’s back to sleep. Praying it’s just the typical response to the Blina infusion and nothing more. I’ll update once results are back.

02/23/2026

She’s back from her bone density test and lumbar puncture. We set her room up with all of her favorite things. We are back in the room she was initially diagnosed in, 431. If all goes as planned, we’ll be outta here on Friday.

We asked about trials and carT again, which they presented as an option, but not one that would get her into full remission. Basically it’s transplant or nothing. Her 100% matched US donor, is off the table now, b/c she’s pregnant. Likely going to be a German donor, also 100% match. She’s taking it so hard! I know it’s so minuscule in the grand scheme of things, but the hair!! That’s what’s hitting her the most. And she said she’s scared. We’ve reassured her, that all will be fine, this is just a road bump.

I also asked about testing for those who want to be checked for a possible match. The transplant coordinator is going to set up a date for those who want to come to Children’s for a cheek swab, TBD.

As always, we thank you all for the prayers and good vibes.

Venmo: Stacey_J2008
https://www.gofundme.com/f/hope-and-healing-for-addys-transplant-journey