Please let me introduce you to Hadera. He is a creative sketch artist, a cellist, an ROTC marine (in training), a big brother, younger brother, and a young man of faith. He is my son and his life is precious to me and everyone in his family. He was born fourteen years ago with Sickle Cell Disease.
As a mother, I was devistated. The prognosis was not good. I had a difficult time thinking about his future. But, over time, I learned how to care for him and that with appropriate medical care, he could have a future. As he grew, my focus became how to teach him to care for himself and manage his illness as an adult.
During one of his clinic visits, the doctor discussed the possibility of a bone marrow transplant for Hadera. I had read about them but the idea of him receiving bone marrow from a stranger had risks and I wasn't comfortable with them. Time passed. I had another baby (after ten years), a healthy baby girl - no Sickle Cell Trait or Disease. Nothing! Again, during a routine clinic visit, the doctor brought up the idea of a bone marrow transplant for Hadera. He thought that Hadera was a good candidate. He suggested that each member of the immediate family be tested to determine if anyone could be a bone marrow donor. Although the chances were low, we decided to have the tests done. The best case scenario was that a direct sibling would be a 100% match. I wasn't very hopeful. I only had two other children and his father and I were not good candidates. The testing was done at low resolution. Within a few weeks, I received a call from the bone marrow clinic at Texas children's Hospital. The nurse told me that there was a possible match in the family....Who was it? It was his three year old sister! I refused to get too excited. We took her in for a high resolution test and within a few weeks, it was confirmed that she was a 100% bone marrow match. Now what? Well, tests were done, their weights were taken and it was determined that she was just too small to undergo such a procedure at that time. So we would wait.
A few months ago, the doctors announced that my daughter had gained enough weight and that we could now prepare for the transplant to take place in February. Things began to happen quickly now. Since the process includes chemotherapy, there was a risk of damage to his reproductive organs. So we attempted sperm banking (It is inconclusive as to whether or not that will be useful or not at this time). In addition, it was determined that if he and his sister had the same blood type, more of the stem cells from the bone marrow could be preserved (or rather nothing lost). Therefore, they their blood was tested and (low and behold) they are the same blood type!
A few weeks before the transplant, I finally had to explain to my little four year old what she was about to do. So I asked her, "Do you know why your brother is in the hospital?" and she answered, "Yes because his blood is sick." So I went on to tell her that she had superhero blood and then asked if she would please let him have a little of it. After she thought for a few seconds, she said, "okay." Around that time, she kept asking for the Jack Jack doll from the recent Incredibles movie. So it was bought for her. That got me thinking about how incredible our story was .... she was. Incredible.... yes like the movie! A few days before the transplant, she requested the Incredibles costume (of course). So I quickly purchased it and she would wear it on the day of the surgery. From that day on, we became Team Incredible.
On February 9th, Hadera was admitted to Texas Children's Hospital BMT unit to begin chemotherapy that would destroy his diseased bone marrow. He tolerated the process well with few side effects. The following Wednesday, February 20th, his four year old sister was brought in to the hospital to have her bone marrow stem cells harvested. My prayer was that the doctors would be able to harvest more that what they needed, so that a less desirable "Plan B" would not be needed. After the surgery, the cells were processed and counted, and; it was determined that they had collected an excess of the cells that they had expected. I almost cried right there in the hall as the doctors made their monumentous announcement. That same evening, the precious stem cells were transplanted into him while we all sat and watched.
Although the transplant is complete, the important waiting process has begun. The new stem cells must engraft into Hadera's body and become his own. Until then, he has no functioning immune system and is extremely vulnerable to infection and disease. Until engraftment is complete, he must remain in Texas Children's Hospital for at least three to four more weeks. After that, he will be quarantined at home for several months to allow his new bone marrow to grow and immune system to develop. The success rate for this treatment is above ninety percent which gives us reason to celebrate.
Bone marrow transplant is extremely expensive and will cost thousands of dollars. Therefore, we are hoping that this cause will resonate with you. Thank you for supporting Team Incredible.
