06/30/2026
DAY 285 Post Transplant!
Wow! Praise God, Oaklyn has been so healthy it seems! We are so incredibly blessed with this new chance at life!!!! Things have been going really well!!!!
She has been having so much fun this summer! Summer has been good for the soul as she is able to be around people so much more outside! She especially loves going to parks and playing with friends! On top of that, we’ve also been risking inside gatherings a bit. (Not advised, but she is doing so great!!!!) Shes been loving getting to go to Sunday School again and she even got to enjoy a private pool this last month!!!! She can’t go in public waters quite yet with lower immunity, but she felt like a fish in a pool for a few days!!
Milestone celebrations: we got her latest Chimerism results back a week ago today……Chimerism results are taken every couple of months. They show the % of Oaklyn’s blood/bone marrow/immune system that is her donor’s (Emmy’s) and and % of Oaklyn’s that still remains. On her last Chimerism she showed 85% Emersyn and 15% Oaklyn. Doctors said this is normal and she could go down to 80/20 and still be a successful transplant and be okay. However, lookout, woot woot woot, not at all what we expected! Shut the front door!!!!!!!!!! Her Chimerism came back Tues. a total surprise….100% Emersyn!!!!!! 0% Oaklyn! God is so good!!!!!!!!!!!!! Wow! This still blows my mind!!!!!!!
This means that the Emmy cells fought and beat out the remaining Oakie cells in her immune system/blood/bone marrow. This is Huge!!!! 100%!!! Wow!!!! 🤩
However all of Oakie’s organs still have Oakie’s cells so there is still some fighting opportunities to be had. The fighting we struggle with a bit yet is the skin gvhd. Our skin is our largest organ. We’re continuing to see some skin flares recurring. Looks like rashes/red bumps. This has slowed her Tacro wean substantially. We had hoped she’d be off mid June, but her docs have slowed it a lot to try to prevent and ward off these skin issues. Tacro is her immune suppressing medicine she is on yet since transplant. We are down to .45mls every 8 hours and she was up to 1.1ml most of the time after transplant. They hope to have her off by the end of August to start preschool. 🙏🏻
She did get to kick all steroids and has been totally off them now for several weeks! Woohooo!!! Along with these decreases she just got to kick her blood pressure medicine yesterday!!!!! Woot woot!!!!! We are down to only 5 meds 3x a day! This is about a third of what she was on for a long time! It feels so great to see these go! Once we kick the Tacro in Aug we should be able to get rid of most all of them!!!
Other great news, this last month she got a minor virus and for the first time ever since she was 6 mos old, she kicked and sailed through it like any normal healthy person would! No pneumonia! No hospital stay! Wow! 🤩 such a great feeling and relief!!!!!
Last but not least, today Oakie got a new “appliance”! This is one of those deals that probably doesn’t matter to anyone else, but to Oakie and I both it means so much!!!! Oaks had to get her front tooth pulled and a whole mouth of metal done right before transplant from her prior mouth inflammation, meds overload, and dental issues. They had to eliminate or treat all sources of infection pretransplant but the front tooth pull was hard on my heart. It changed our Oakie’s smile too prematurely. We looked high and low to find a doc that would offer a cosmetic solution that wouldn’t compromise health and would be practical for a 4yo. She has been asked about her tooth, commented on it frequently, etc and as a mom I just really wanted to restore this for her. Her body and mind has been through so much this past year. Gaining all the weight from steroids and puffiness, losing all her hair and watching it grow back slowly, the news scars she bears, etc, giving her her front tooth back means the world to this mama!!! One less thing! Her smile is now restored!!! 🤩 & she can lose it again at 6/7yo like most other kids do! Woohoooo!!! She is so proud of her new tooth!!!! & her hair is coming in curly and getting longer day by day!!! So exciting!!
I am so proud of this girl! She is so strong! & we are so incredibly grateful to the whole community of prayer warriors, family, and friends that have been here for us throughout. We feel so incredibly grateful and blessed.
I’ve made the comment a lot in the last couple of weeks, but have you ever felt divine protection, peace, and the prayers of others? Throughout much of this journey there has been an unnatural peace and comfort. We owe that entirely to God and so many prayers said for our family. We feel it. Thank you thank you 🩷 throughout all the celebrations AND trials, God is so good. “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28
Special prayer requests for our Stat 1 friends: A 12yo named Charlie in Seattle whose transplant day is today and her family. We are so excited for healing for her! & pray for them throughout this journey. Also for our stat One friend, Sienna overseas who recently had a BMT. What an incredible blessing to have this new successful treatment option available to this rare cohort of patients born with Stat One Gain-of-Function with the use of Emmapalunab to get them safely to and through transplant! (An option that gives entirely new survival odds-we’ve had now available and tested less than 3 years!) PRAISE GOD! 🙌🏻🙏🏻
