Jordyn's Story
written by mom Christy

Jordyn Ashleigh was born March 30th, 1998. On October 29th, 1998, Jordyn and I flew over to Germany to join her dad who is in the Army and was stationed there.

Jordyn was a very health little girl and very happy. On Tuesday, March 23rd I took Jordyn to her 12 month check-up and was told that she had Croup, and that if things got too bad to take her to Landstuhl Army hospital. Well, on Wednesday night that is just what we did. When we got her there, her windpipes were swollen up to 75% and she was only getting 15 % of oxygen, which was around 9 or 10 pm. They drew blood and before midnight we were told that Jordyn had Leukemia.

We were told by the pediatrician, Dr. (Captain) Fuller, that there was 2 types of leukemia that Jordyn could have, Acute Lymphoblastic Leukemia (ALL) or Acute Myeloid Leukemia (AML). ALL is the common childhood leukemia and is much easier to treat and get into remission. AML is much harder to get into remission and the survival rate is not as high. Jordyn had AML, Acute Myeloid Leukemia. Doctors did a bone marrow biopsy and a spinal tap also known as a lumbar puncture (LP). We were then informed that Jordyn not only had the leukemia in her bone marrow but also in her spinal fluid, or Central Nervous System, CNS.

We were sent up to the Intensive Care Unit, until the morning and then told that we would be sent to a German hospital until she was stable enough to fly. So we were sent to Homburg University, for 2 months. There she began chemotherapy, and her doctor was Dr. Graf. Finally on May 19th, Jordyn and I flew to Washington DC and we drove to Walter Reed Army Medical Center where she would continue her treatment. We were told that Jordyn would need a Bone Marrow Transplant and since she had no siblings, they put her on the National Bone Marrow Registry and found a donor that way. We got the call they had a match in October, the next week they began doing tests to prepare her for the transplant.

On October 14th, 1999 they did a pre-transplant bone marrow biopsy and found that the leukemia was back in her bone marrow. She then began 5 days of chemo to put her back into remission and the transplant was still on. Jordyn was admitted to Children's' National Medical Center, in Washington DC, for her Bone Marrow Transplant, on November 8th, 1999. On Nov 9th, she began 3 days of twice-a-day of Total Body Irradiation, TBI, then on Nov 12th she began 5 days of high dose chemo. On Nov 19th, Jordyn received her new bone marrow!

Jordyn did very well through the transplant other than a 2 day stay in Pediatric Intensive Care Unit, because of low blood pressure. She returned to the transplant unit Nov 27th, and her White Blood Cell count showed life! Jordyn was released from Children's on December 15th, with her counts looking great! She then began having weekly checkups rotating from Children's to Walter Reed.

On February 1st, 2000, I took Jordyn into Children's for her weekly visit, they drew blood as normal, and then they came back with bad news... Jordyn had relapsed, she had 60% leukemia cells in her blood. We were told that there was a new clinical trial that was going to be available in March, called CMA-676. CMA-676 is a chemotherapy drug that has put adult relapsed AML patients back into remission, and they are now trying it on children. Jordyn was going to be one of the children in the trial, which was scheduled to begin March 14th, 2000.

Sadly on March 14th, I got the call that Jordyn was not eligible for the trial. That morning the FDA had announced that children that were less than 6 months out of their bone marrow transplants would not be allowed to be a part of the trial, because of the high chance of death during the trial. Once we had that news we knew there was nothing else to do for her but let her go.

We had been praying constantly for Jordyn, of course, and let me tell you they really started going up to Heaven after that call. We made the most of every single day and made a lot of memories with her. Jordyn celebrated her 2nd birthday. We had a small party with a few of our friends the Saturday before the big day and then on her actual birthday we went over to the Child Life Therapist from Walter Reed house, and had a cake and opened a few gifts. We came home and she opened up the rest of her gifts from us and some other family members that we had saved for the big day. We felt a triumph on her birthday, because we had been told she would not make it.

We were blessed to make it into April and with April came some difficulties. Jordyn's eyes began to bulge out and we were fearful that she may go blind. We talked with her doctors and the decision was made to do small dose of radiation, because leukemia cells/tumors had formed behind her eyes and were pushing them out. She responded well to the radiation and on the first day we saw small results, she only had 3 doses.

The one side effect Jordyn did have was bruising around the eyes. She looked like she had been in a terrible car accident. We would ask her if they hurt and she always told us no. We watched as our little girl, began to lose more and more weight. We were told that it was because the leukemia was eating all her calories, so her body really was not getting fed. Jordyn ate a lot and unlike most people never seemed to lose her appetite! She continued to love her hot dogs, mac-n-cheese and yogurt. She also discovered that for the first time in her life she enjoyed pop. At this point we didn't care, it was calories and we were stuffing as much in her as possible!

Easter came and we felt like she was doing still pretty well. On May 4th, Chad got a call from his mom saying that his grandfather died. On Sunday after church, May 7th, Chad left for Ohio to attend the funeral on Monday and then would be driving back that evening. We took some pictures of us before he left. Jordyn and I had a wonderful evening. I took her to Taco Bell after Chad left, and she ate a bean burrito. We then went to choir practice, came home and just spent a nice evening together. She laid down on the couch and then we went to bed together. It was the first time in months she had agreed to sleep in bed rather than on the floor. I woke up with her at 3 am, because she wanted some medicine; she was on codeine and Tylenol 3. I gave her some and we rocked for a little while and then we went back to bed. At 5 am EST, I woke up to Jordyn taking her last breath. She was in my arms sleeping very peacefully. Jordyn entered Heaven on May 8th, 2000 in the arms of her Mommy and flew home to God.

Only two weeks after losing Jordyn, we found out that I was pregnant! On January 31st, 2001, Jordyn became a big sister to a beautiful boy named Jacob.