Diagnosed September 11, 2000
We were in and out of the Emergency room for 5 weeks with what was diagnosed as a viral infection. Jayla was very tired and did not want to play; she preferred to lay on the couch and rest. Finally, I got an appointment with our family practice doctor. They had blood drawn and Dr. Langer told us she thought Jayla had Leukemia and that if we would have went on vacation she would have probably died while we were away. Jayla got a shot of antibiotics and we were transported via ambulance to Walter Reed Army Medical Center where we met the wonderful doctors and nurses who would care for Jayla for the next 6 months.
The doctors did more blood work and a bone marrow biopsy to confirm Jayla’s early diagnosis. Our worst fears became reality, as we were overwhelmed with medical terminology, the care plan for our daughter and the effects on our entire family’s lives.
Jayla underwent surgery to insert a tube into her chest for the administration of numerous medicines. Jayla started her first round of chemotherapy to treat her AML Leukemia with a monosomy 7 chromosome abnormality, within 2 days of being diagnosed.
We spent the next day contacting all of our family and friends and arranging for help caring for our 5 month old daughter, Taylor. Luckily, the Air Force was very supportive of the situation and allowed Kenny to spend countless hours caring for his family and Kenny’s parents flew in immediately from Las Vegas to help care for Taylor. We quickly learned of a new way of life, about how germs could easily harm Jayla due to her fragile immune system. Sure Kenny and I could have walked around crying and mad at the world, and we did at times, but we had to be strong for Jayla. We vowed not to let Jayla sense or see our fears as she battled this disease. We had to make Jayla forget she was sick and we had to work with our wonderful doctors to get our baby girl well.
Jayla’s hospital room quickly became a toy store. Jayla loved baking the doctors and nurses cookies in her easy bake oven and became the “happening” room on Ward 51. We ended up staying in the hospital for 40 days before finally getting to come home. Over the next 4 months, we spent our time alternating between home and hospital receiving chemotherapy, lab work, and treating neutropenic fevers.
Jayla got to spend Christmas at home, which meant a lot to us, even though we were prepared to celebrate it anywhere. In January, we reached a huge decision point in Jayla’s care. The leukemic blasts had decreased some, but were not totally gone away. Our options were to keep doing chemotherapy and hope the disease would not take over, or have a bone marrow transplant in hopes of a full recovery. First we had to test Taylor to see if she was a sibling, bone marrow match, but she was a 4 out of 6 match. We knew it would be more difficult finding a complete match for Jayla because of her ethnic background. We started the search and were not having much luck, so Jayla’s Auntie Michele, became determined to help find a match. Michele worked tirelessly with her employer, American Airlines, and organized several bone marrow drives at airports across the country. Sadly, after all the efforts Jayla still did not have a match. The doctors then approached us with the possibility of a bone marrow cord blood 4 of 6 match. The reasoning behind the cord blood is that it would better adapt with Jayla’s body because of the cell immaturity. The doctors advised us to take a family trip prior to the transplant.
Jayla loved Las Vegas because her Nannie and Pappa lived there and she also loved the Rio Hotel Mardi Gras parade. Auntie Michele worked hard and actually arranged our stay at the Rio Hotel and coordinated with a generous man who paid for our plane tickets to Las Vegas. In Las Vegas, we were overwhelmed with kindness and hospitality. Jayla was able to participate in her favorite show, masquerade in the sky, and threw beads from a float high in the ceiling. It was a dream trip come true.
After our wonderful vacation we headed back to Maryland to start preparing for the transplant and how we would have to alter our way of life to remain as sterile as possible during transplant process. We were finally at the transplant time; we arrived at Childrens hospital in Washington DC ready to battle. Our first 3 days were spent taking a daily trip to Georgetown medical center for radiation treatment. The staff was amazed when Jayla wanted to walk herself to the ambulance everyday. Next we had 7 days of harsh chemotherapy to completely destroy Jayla’s immune system so the bone marrow transplant would take and start reproducing new healthy cells. Kenny and I alternated our time at the hospital and at home caring for Taylor. I would stay at the hospital overnight and then go home and care for Taylor, shower, eat and get ready to go back to Jayla’s side. The transplant took place and then about 2 weeks later, Jayla’s stomach started to swell and she could not breathe well. It was hard to comfort her at this point, but we did whatever we could to please her. Jayla had come down with an infection and we had to be admitted into the ICU for 3 days, back to the transplant ward for 2 days and then back to the ICU. Our ICU stay got tougher each day because Jayla was now in pain. She was sedated to ease the pain and we would constantly read to her and play her favorite Brittney Spears and Christina Aguilara CDs. Kenny and I refused to leave Jayla alone at all, even though you weren’t supposed to sleep in a patients ICU room. At this point Kenny and I had moved into the Ronald McDonald house for sleeping, showering, and eating to be closer to the hospital.
Then one Tuesday morning, when I was forced to leave Jayla’s side due to the ICU rounds, I went upstairs to the parent lounge and showered and ate something. I got a page to return to the ICU immediately. Jayla had coded during the doctor’s rounds and the doctors and nurses were working vigorously to revive her. They advised me to go to her side and talk to her and let her know I was there. Meanwhile someone contacted Kenny and he came as soon as possible. As soon as they were able to pump enough medication into her little body, the doctors talked to us about her poor prognosis. Over the next 3 days, Jayla had no reaction to anything that had previously stimulated here. Kenny and I continued to read to her. Kenny’s parents were in Maryland helping out, when we had to make the toughest decision of our lives. Do we leave Jayla on life support to hope for a miracle that would probably never happen, or do we turn everything off and let our baby be at peace and done with her agonizing battle. We chose to turn everything off and were able to gather as a family and hold and kiss our baby as she finished her journey to a better place. I truly believe that Jayla died that Tuesday morning because she was very cold and never responded after coding. Looking back, we do not regret any of the medical decisions we made for our daughter. We had made a family decision to beat this disease and gave our all in helping our daughter. Sure we constantly go back and forth about what if we would have done just 1 thing differently. Would it of changed our daughter’s outcome? We have experienced a constant circle of madness, sadness, happiness, and thankfulness. We know this experience has changed our lives for the better. It has forced us to realize the value of the simplest things and that life is too short and not guaranteed. Cancer gave us the ability to live the last 6 months of our daughter’s life like everyday was her last.