43 blood transfusions & counting

We first visited St. Jude in Memphis, TN, in April 2025, and it was a huge milestone in Charlotte’s journey. That visit came with so many emotions, a lot of new information, and some very big decisions that we have continued to process as a family. In June 2026, we returned to St. Jude for follow-up testing and appointments, continuing to take the next steps in Charlotte’s care.

During both visits, we have had the opportunity to meet with so many incredible doctors, specialists, and members of Charlotte’s care team, including genetics, the rare bone marrow failure team, the bone marrow transplant team, social workers, and anesthesia. We have also been blessed with an amazing nurse navigator who walked us through each appointment and helped make an overwhelming process feel much more manageable. Every person we have met at St. Jude has been kind, compassionate, and truly dedicated to Charlotte. They allow us to focus on her while they take care of everything else. Despite everything our family is facing, St. Jude has truly been one of the biggest blessings in this journey.

During our April 2025 visit, Charlotte received a blood transfusion and underwent several procedures, including a sedated FerriScan (MRI of her liver), a sedated bone marrow biopsy, and a sedated auditory brainstem response (hearing test). She was an absolute rockstar through it all, and we could not have been more proud of her.

During our most recent visit in June 2026, Charlotte had repeat testing, including another FerriScan, a Cardiac T2* MRI to monitor iron levels in her heart, another auditory brainstem response, and follow-up appointments with her care teams. Once again, Charlotte was so incredibly brave. We continue to be amazed by how much she has grown and how she handles everything thrown her way with such a positive attitude. She walks into these appointments with a strength and resilience far beyond her years, and we are constantly in awe of her.

One of the ongoing challenges in Charlotte’s journey is iron overload from her frequent blood transfusions. At her previous St. Jude visit, her liver iron concentration (LIC) was 8 mg Fe/g dry liver. At this most recent visit, her LIC increased to 10.7 mg Fe/g dry liver, which remains in the severe range. While it is hard to see that number increase, it was not unexpected given that Charlotte has received 19 additional transfusions since her last visit—approximately one every three weeks.

To help combat the excess iron, Charlotte continues taking Jadenu, an iron chelation medication. Her dose was recently increased to be more aggressive in removing the iron buildup from her body. She is now close to the maximum dose allowed for her age and weight, with only a little room left to increase if needed. We are very thankful that she continues to tolerate Jadenu well, and so far, her kidneys have remained unaffected. Kidney issues are one of the major concerns with Jadenu, so this is something her team continues to monitor closely.

We have also started discussing the possibility of dual chelation therapy in the future. This would mean continuing Jadenu while adding Desferal, which is administered subcutaneously through a pump overnight about five nights per week. This is not something we are starting right now, but it is something we anticipate may be needed in the future—especially as we get closer to a bone marrow transplant, since her iron levels will need to be significantly lower before moving forward with transplant.

Thankfully, all of Charlotte’s other tests and labs came back normal, which was wonderful news.

Next steps for Charlotte:

• Continue blood transfusions approximately every three weeks, as her second (and final) steroid trial was not successful 
• Continue taking L-leucine (an amino acid that may promote linear growth and potentially stimulate red blood cell production) 
• Continue Jadenu at her increased dose to more aggressively manage iron overload 
• Continue closely monitoring her kidney function and overall tolerance of Jadenu 
• Consider dual chelation therapy in the future (adding Desferal via subcutaneous pump) if needed, especially as we get closer to transplant and her iron levels need to be lowered
• Continue discussions and planning for a bone marrow transplant when the timing is right for both our family and her medical team 
• Return to St. Jude in Memphis in mid-2027 for repeat labs, imaging, follow-up appointments, and meetings with her care team 

Charlotte is the strongest girl we know. Despite everything she has faced—and everything that may still be ahead—we continue to choose hope. Hope is what keeps us moving forward, and we truly believe this is just one chapter in Charlotte’s story.