Our experience getting a haploid identical bone marrow transplant as a curative treatment for Sickle Cell Disease.
It’s day +47. It’s a lot of meds that Amaya has to take in the morning and at night. These are to ward off graft vs. host disease and infection. Overtime she will slowly come off meds, we will go home on two and then after a year 0 meds. Right now things are peaceful, […]
Day +47 Post Transplant Read More »
We made it to the Baltimore Ronald McDonald House some updates: * Amaya is 100% engrafted (sometimes you can have a 90% or so engraftment with some of your old cells remaining, she has no sign of hers which is amazing!) * Before getting discharged her Hickman / port did get an infection so they
Amaya lost her hair on Friday and at first it was very traumatic for her. I cut my hair down low in support. My warrior princess has bounced back today, is in better spirits and praise God no complications. She has required transfusions which is normal at this stage but now her numbers are starting
Hair Loss After Transplant Read More »
Amaya has two November birthdays Amaya’s Haplo BMT was on November 1st and she turned 9 years old November 8th. Today we are on day +10 of her BMT. So far no bad side effects No nausea, no vomiting, no sores praise God and she still is full of energy. Patients do typically lose their
Two November Birthdays Read More »
This Friday I donated bone marrow to my daughter for her transplant. This procedure is called a Haplo or Half Match Related Transplant. Amaya had no full match options available. So far the biggest challenge has been the sadness of being away from family for me and Amaya feeling upset about being restricted during long
November 1st Transplant Day Read More »
A different kind of Halloween Tomorrow is the big day Amaya will be getting her transplant. Yesterday was pretty hard she did her first round of radiation. She was frustrated mostly because of being restricted. Afterward she was very fatigued and by the grace of God she flirted with having a fever and thankfully that
A Different Kind of Halloween Read More »
Amaya just finished the first week of Chemo. Treatment has been smooth so far. What has been challenging is the emotional impact for her. She was very upset that she couldn’t move when she wanted to and had to stay in bed for 4 hours or more. She was crying and tantruming a lot which
1 week of Chemotherapy Read More »
Amaya has been admitted for her Bone Marrow Transplant. She successfully made it through getting her Hickman and feeding tube to start the process, I was super nervous because she had to be put to sleep using Anesthesia. All went well and tomorrow she will start Chemotherapy. Will keep you all posted, thanks so much
Admitted to the Hospital on October 21st 2024 Read More »