Meet Mya! Mya is 14 months old and has been through more than you can ever imagine. This little girl is so loved by her mom and dad and her 4 older sisters, as well as the many people praying for her. This past fall we helped plan a wish for Mya and her family. This trip was so fun to plan and also very meaningful as each sister picked a place they wanted to visit with Mya and their family. I believe it was a trip full of memories that will last a lifetime! Mya, keep fighting baby girl and know that you are AMAZING!
Mother’s Day 2016 was a day my husband Steve and I will never forget, the day I delivered Mya, our fifth and final daughter. Our family was complete, Steve and I could not have been happier. Mya’s first three months went by fast but smooth. After a week of what we thought was the stomach bug, two trips to the Emergency room and one to her doctor, we were devastated to find out that Mya has cancer. Cancer? How does a 3 month old have cancer? We were admitted to Upstate Golisano Children’s Hospital for further testing. A few days later it was discovered that Mya had AML (acute myeloid leukemia), and it was a subtype with a very poor prognosis and she would need a bone marrow transplant. Mya and I spent most of the next four months in Golisano for three rounds of induction chemotherapy. While Steve had to stay home because of work and to take care of Mya’s older sisters. We were fortunate that one of her sisters was a perfect match for the transplant.
December 6th, 2016 we made the trip to Philadelphia. December 16th was the big day, transplant day. The day where one of my daughters saved my other daughters life. We spent 81 days in Philadelphia, which brought our total to almost 7 months of Mya being away from her daddy and sisters. I don’t know if there was anything more exciting than the drive home from Philadelphia, our family was finally going to be together under one roof.
Unfortunately, less than 24 hours after we got home, her oncologist called to tell us that the bone marrow biopsy that they had done before we left showed signs of cancer, she had already relapsed. We were told to stop all of her anti-rejection drugs, and her only chance of survival was for her sister’s cells to take over and kill the cancer. As it is way too soon for more chemo. It took almost two months, but her sister’s cells did in fact win, and she was back in remission. Our family was together, Mya was flourishing, crawling and starting to walk, eating and drinking and was finally a normal baby. Until June 26th, the dreaded day we found out she relapsed, and not a mild relapse this time, her body had been completely taken back over by the leukemia. Our options were limited, her body wasn’t ready and couldn’t survive aggressive chemo, Mya was terminal. Our options were palliative chemo to keep her comfortable and buy us as much time as possible, or make her comfortable for her remaining few days left on earth. Two days later we were readmitted to Upstate Golisano to have a port placed and to start palliative chemo. We were all devastated, Steve and I decided to make a bucket list with our girls, something they all wanted to do with Mya. We had no idea how we were going to afford it, as it had been almost a year since I was able to work, and though Steve was able to keep us afloat for the last year, we didn’t have anything left over for vacation. Mya was too young for Make-a-Wish. That is where Amazing Gracie’s Gift saved the day. Lisa reached out to us and said that they wanted to make our dreams come true. That every family deserved the best memories. She told us to plan our dream vacation and she would make it happen. She did not disappoint. Our family was able to go to Sesame Place, the Philadelphia zoo, the Adventure Aquarium and Crayola Experience. Our girls had a long weekend of stress free, cancer free, hospital free fun with Mya. We got to see Mya on a tube in the lazy river, we ate dinner and had a meet and greet with all the Sesame characters, we got to hear her bark at every animal at the zoo and aquarium, we got to have our own coloring book pages made with Mya’s picture. We had a perfect vacation. Because of Amazing Gracie’s Gift, Steve and I were able to spoil our girls, thank them for helping us survive the last year, and we got to make memories that will last a lifetime. Thank you again to everyone involved with Amazing Gracie’s Gift, I hope you all know what you mean to families like us!