On March 28 2023 our 18months old daughter Raegan was diagnosed with AML acute myeloid leukemia.
We had noticed she wouldn’t walk about a week before and she was COVERED in bruises, we had taken her to our primary care and were referred to a pediatric orthopedic doctor and hematology. We had an appt with ortho and was misdiagnosed with toxic synovitis ( inflammation of the hip), I had missed the call from hematology due to work. The orthopedic doctor had prescribed Tylenol and motrin for Raegans pain and if it wasn’t better in a week we were to bring her back. A few days shy of a week I noticed a small purple dot on her inner thigh we took her to our local ER, we did blood work and was transferred to Toledo by 3am. By 9am we had our diagnosis and started treatment.
Raegan received blood and platelets before having surgery for a double lumen broviac and a Bone Marrow biopsy. We started Chemotherapy that night. Raegan had a week of chemo and did really well with it, she had no side effects. We were waiting for the test results to tell us if she was high risk or low risk AML. Within a week we were informed she was High Risk which would result in a BMT (Bone Marrow Transplant). Her treatment plan required 3 rounds of chemo then a BMT. This required us to be tested as matches, unfortunately we were not a match and neither was Reid. Thankfully she had over 1400 potential matches and would do more testing to pick the closest match.We would be in a the hospital for roughly 3 weeks at a time for each round or chemo with countless blood and platelet transfusions. Our girl did amazingly well and only had a bit of nausea during her 3rd and high intensity round of chemo. We ended our journey at Toledo in July of 2023.
We had decided to choose CS Motts in Ann Arbor for her BMT. On July 18th she was admitted for a surgery for a second broviac. Raegan would have 5 days of high intensity chemo to wipe out her immune system and bone marrow so that her donors Marrow would take root.
July 25th 2024 Raegan received her BMT. she did well with the transplant but did have mucositis. On Friday August 4th around 11pm she stopped breathing due to the mucositis, thankfully the staff and my husband jumped into action and cleared her airway. She did start having a seizure and was transferred to the PICU. She spiked a fever while in the PICU. We decided to have her intubated for her protection as she wasn’t protecting her airway. Over the next 48 hrs she had a EEG, MRI, CT and we had cultural done to see if there was any infections. Thankfully there was no infections all of her tests came back normal and she was back to her normal self by Monday. We were transferred back to our wing and she went on as her normal self.
On August 15th we were discharged from the Hospital. We went home and tried to get into our new normal. This consisted of biweekly appointments, transfusions and dressing changes. She received blood and platelets for about a month after discharge and we did weekly dressing changes until October when her final broviac was removed! Our visits are now every 3 months! We recently celebrated her 1st rebirthday (her BMT anniversary).
Raegan is moving mountains and has an amazing testimony to share! She will be 3 years old on September 28th! We are so proud of what our girl has overcome in lifetime already.