Team Zoe HLH BMT Warrior

28/09/2023

Zoe is +584 days since transplant, that’s just over a year and a half, and yesterday she entered her first aerial competition.
For those of you who are going through or have gone through transplant you know how much strength is lost in the process. Today is the strongest both physically & mentally Zoe has ever been before & after transplant!
I just wanted to share this incredible milestone 💕

30/05/2023

21/04/2023

Zoe got her 1 year post transplant results yesterday, all her blood counts look great and the chimerism (donor cells) is steady at 93%!! she is now officially off all her medication, we couldn’t be happier!!

01/01/2023

Zoe would like to wish one & all a happy new year 🎉 thank you for all your support throughout 2022 ❤️ May 2023 be filled with good health, love & happiness ❤️

Zoe is currently +313 days and doing so well. She has started the long journey of immunisations but has dropped chimerism in the 80% range, but the doctor isn’t too worried as bloods are looking good ✅ She is looking forward to getting back to school this year & living a normal life.

We wish everyone on this BMT journey the strength to jump those hurdles, you can do it!

❤️❤️❤️

29/10/2022

Welcome to another 💙Fact Friday💙 everyone!

🦴Do you know what bone marrow is and why it’s a critical piece of our HLH Warrior’s journeys?🧐

🦴Bone marrow is the soft, fatty tissue inside your bones. It contains ✨stem cells,✨ which are basically “baby” cells that go on to become red blood cells, white blood cells and platelets.

🦴Our HLH Warrior's stem cells don’t function properly. Their stem cells grow into faulty white blood cells that not only become overactive in the face of infection, but also attack our Warriors own blood cells (red blood cells, platelets, etc.)

🦴For our Primary HLH Warriors and some Secondary HLH Warriors, a bone marrow transplant (BMT) provides the only hope for a cure from HLH. A BMT replaces damaged bone marrow with healthy bone marrow cells that produce normally functioning white blood cells (macrophages, T-cells, etc.).

Citation: Cincinnati Children’s HLH Center of Excellence

27/10/2022

As of tomorrow Zoe will have officially weaned off her immuno-suppressant cyclosporine, as well as Fluconazole, yay! She will now only take Valaciclovir for viral infections and Resprim for pjp infections. She has gone from 27 tablets per day when she left the hospital to now 5 per day, so exciting!

23/09/2022

Zoe is 7 months post BMT (+214) and we were given clearance from her doctor to go on a family holiday! We couldn’t travel too far from the Children’s hospital & the nearby hospital had to be aware that she was in the area, but it is so nice to get away and spend time with family & close friends ☀️

30/07/2022

Thankfully Mia (Zoe’s older sister) doesn’t have the gene and isn’t even a carrier 🙏

Welcome to another 💙Fact Friday💙 everyone!

👨‍👩‍👧Today we'd like to answer an important question - What are the chances that I have another child with HLH?

✨Here's what you need to know👇

👨‍👩‍👦Each full sibling of a child with Primary HLH has a 25% chance of developing the disease, a 50% chance of carrying the defective gene (which is very rarely associated with any risk of disease), and a 25% chance of not being affected and not carrying the gene defect.

✨In short, if you have another child with the same partner, there is a 25% chance your next child will also be affected by HLH.

Citation: Histiocytosis Association