Genesis' Story

From the time I was pregnant with Genesis, I knew she was special. During my pregnancy, I was very sick and doctors didn’t understand why. I named her Genesis for a few reasons, but one was because it means “beginning”. Having her would be a new beginning. It definitely was, because when she was born through an emergency c-section on October 6th. She flipped our world upside down. Doctors were baffled with her. After doing some Googling, I found a disease that seemed to match every criteria Genesis had, it was called Griscelli Syndrome type 2. It is a one in a million immune deficiency, with leukemia like effects (HLH), and partial albinism. I pushed to get her sent to PCH, where NICU doctors told me it was so rare, it probably wasn’t real. But the hematology/oncology team was on top of it, and genetic tests were ran. After two weeks, Genesis was diagnosed officially with Griscelli Syndrome with HLH. 

She was just two weeks old when doctors told me her only chance at survival was a bone marrow transplant, to kill her sick immune system and restore it with a donor’s healthy cells. I was so terrified because the side effects of a bone marrow transplant are just as dangerous as her disease, but it was the only chance we had.

She started chemotherapy and steroids at 6 weeks old. And at just 2 months old, we started HARD chemo conditioning to prep her for transplant. Genesis had her “rebirthday”, her second chance at life, on December 26th- the day we transplanted her cells! I say it’s the best Christmas gift ever.

But we were not out of the woods. All the side effects of chemo hit very hard for the next two weeks to thirty days. This time was the most dangerous, filled with life threatening complications. It hurt to see her in so much pain, when she was so small.

At 33 days after transplant, she left the hospital for the first time in her little life! It felt like I was doing something illegal by walking out with her when she was discharged. It was so scary learning to take care of her central line, her pumps, her meds that were due every four hours. We still had to stay at the Ronald McDonald house.

But we grew and grew together and it became our new normal. We went through many surgeries, many ups and probably even more downs. Healing after such a complex treatment is not linear. I struggled so much emotionally, but it gave Genesis and I a bond like no other. We lived in Phoenix for over a year! And on January 2nd, 2024, we went home to Safford for the first time. We left on her birthday October 6th, 2022. We had left everything behind for over a year. We didn’t have our family, I didn’t have my jobs, and I had to quit my paramedic program. But we did it!

Now we still have to go to Phoenix, but we are outpatient and go once a month. We will need to monitor Genesis for the rest of her life, to ensure she does not relapse, lose her graft, or have any other significant complications, like secondary cancers. But she is a happy, MOSTLY healthy two year old now! She is really a miracle, and I am blessed to be her mama!