Amaya has been feeling well! The local hematologist we work with doesn’t usually see many BMT patients so he voiced that he wanted to make sure Amaya was not displaying symptoms of GVHD because her eyes were itchy and red at times and he repeated at least 3 times he is not used to working […]
Life After a Haploid Identical Transplant for Sickle Cell Read More »
It’s day +60 post haploid identical bone marrow transplant. Today marks another milestone! I am a little nervous because she also did another test for engraftment. Doctors test for engraftment at your 30, 60, 90, 180 and 365 day marks. I am keeping the faith and know that our beautiful little one is healed. All
Day +60 Post Haploid Identical Bone Marrow Transplant Read More »
The Sickle Cell Mommies Group on Facebook recently shared this and I found it so helpful, so I had to share it here. I never knew what Ferritin was and I had to look it up just the other day, so this guide was very timely!
A Helpful Infographic Guide to Blood Tests for Sickle Cell Patients Read More »
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 »