#ada scid

[tenaciousmoneymuffinzine]

My baby brother has just finished chemotherapy and he has his bone marrow transplant tomorrow.

(For those who don't know, he was born with ADA-SCID and has no immune system. Chemo kills any existing immune system. My other brother is a full match and then Baby Boy gets his own working immune system).

Chemo went well, though he does feel pretty awful right now, poor baby. We leave for hospital admission for big brother bright and early tomorrow morning, 5am. Transplant should happen around mid-afternoon.

Baby Boy has to stay in the hospital until T-cells reach 200 and then he can isolate at home for a year until T-cells reach a normal amount and then, following that, he gets to live a normal life 🙌🏼

It's been a really rough past 10 months, but we make the best of it, and we're excited for his Life Day tomorrow.

Prayers everything works out for the best and we get a healthy baby at the end of all this 🙏🏼

[tenaciousmoneymuffinzine]

That's a wrap!

Transplant just finished and Baby Boy is sleeping for the night after a long day of playing with Big Brother and getting spoiled by all the nurses with new toys for his "Life Day" and eating half of his normal calorie intake that for a baby his age (this is good, considering he wouldn't eat at all a couple days ago).

Big Brother hardly even realizes he donated and he gets to spend a few days at Grandma and Grandpa's getting pampered while they futilely try to convince him to take it easy (4 year olds and their penchant for bouncing off the walls, I guess 😆).

Now, we begin the process of letting his T-cells build (and they're his this time and not a drug building them for him 🙌🏼). We still have a long road ahead, but it's crazy to believe we've finally made it to today after anticipating it for so long!

Thank you everybody for the prayers, and continued prayers are SO appreciated as we navigate the next steps 🙏🏼🩷

Info on his condition is in this post ❤️

[tenaciousmoneymuffinzine]

Transplant day! Big Brother is out of surgery and he gets to hang out with Baby Boy while they process the bone marrow. Transplant around 5 or 6 this evening.

Prayers still appreciated!

The info on what's happening is in this post. Thank you all for the prayers! 🩷

[tenaciousmoneymuffinzine]

So I lied. Okay, I was misinformed. Buddy does not need 200 T-cells to come home. He needs to have .5 (so 500, technically) neutrophils and sustain it for three days in a row. Yesterday he had .6 (600), and today he has 2.3 (2,300). This boy is coming home Thursday - next Monday at the latest 🙌🏼

This is so amazing! We still have a ways to go (he has an NG tube, he has a central line for a while longer, he has 6-12 months of at-home isolation before he can be a normal kid) but I can't believe we're here!

Thank you all for all the prayers you've sent our way 🫶🏼

[tenaciousmoneymuffinzine]

My dad's birthday was 2 days ago, but we didn't really celebrate because he spent most of the day at the hospital with my brother. So today, after receiving the news of Baby Boy having .6 neutrophils, I made this cake to celebrate both events.

[tenaciousmoneymuffinzine]

Me all day today because Big Brother's bone marrow worked and we have engraftment and Baby Boy has .6 neutrophils:

[tenaciousmoneymuffinzine]

As of this morning, Buddy has 1.3 neutrophils!!!!! This is his 3rd day in a row with neutrophils over .5 which means he is considered fully engrafted 🎉

[tenaciousmoneymuffinzine]

So, we had bad news and then good news and then great news.

Doctor told us that we were misinformed (again 🙄) and that it could take up to 24 weeks for Buddy's T-cells to get high enough to come home. And based on how he was reacting, they said it would likely take him that full 24 week. 24 weeks is March - which is when he would be going back so we can wean him off Revcovi and get ready for the transplant. That was very discouraging.

However, just a few days later, we got T-cells back and his CD4 was at 156 from 30 and his CD45ra was at (I believe) 116 - both have to be 200 for him to isolate at home until Spring.

We jumped on getting my mom's room torn apart and redone (new insulation, carpet, everything) so it's ready for him to come home in (what we thought) about mid-December.

Today results came in again. CD4 is 252 and CD45ra is 216!!! He's ready to come home!

Now to deep clean the family room for him and my parents to stay there cause new carpet for the room doesn't come until December 9th 😅

But hooray! We're so excited!