NOTE FROM THE MACS STAFF

Arielle's story has NOT been updated yet since she passed away on July 11th, 2001. We will update the end of her story as soon as we receive more information from her family.

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Arielle's Story
written by mom Priscilla

Arielle and her identical twin sister Alanna were born October 2nd, 1991. We felt so blessed in having healthy twins that weighed over 7 pounds each at birth. The joys of parenthood were doubled as we watched our little ones interact with one another in that special bond that twins have.

In April of 1997, while on a spring break vacation over a thousand miles away from home, I noticed some bruising on Arielle. We had her seen by a pediatrician who immediately ordered a blood test. Every parent's worse nightmare was realized by us when we were told that Arielle, at the age of 5, must have leukemia and that we had to get her to a major children's hospital immediately.

We thought that we had been given the worse news that we could possibly be given, but we were wrong. Whereas most children with Acute Lymphoblastic Leukemia are given a relatively good prognosis these days, we found out about a month after diagnosis that our daughter had an extremely rare trait to her leukemia which would give her a poor prognosis. 70% of the other approximately 30 children who had this trait had lost their battle within one year of diagnosis. In order to improve Arielle's chances, she was placed on the most intensive and aggressive chemotherapy protocol given to children with ALL. Fortunately, Alanna was spared this disease, although she did need monitoring for the first 2 years. 

The next few years revolved around hospitalizations and chemotherapy for Arielle. Finally, Arielle completed her treatment in November of 1999. Our family took a trip to Sea World/San Diego by train to celebrate the return to "normal" for Arielle and our family. When Arielle reached the 3rd year anniversary date of her diagnosis in April 2000 with still no evidence of disease, my family started to believe that perhaps she had beat the monster.

In July 2000, while attending Girl Scout Camp, Arielle picked up a virus. She just didn't act right. Our oncologist suggested we bring her in for a bone marrow aspirate just to be sure. Our nightmare started all over again when we found out that Arielle's bone marrow was once again full of cancerous blasts, the immature White Blood Cells which are the marker of leukemia. Arielle was admitted immediately, a new central line placed in her chest with 2 lumens this time to accommodate more blood products and chemotherapy, and a very aggressive chemotherapy protocol was started.

This time around, the chemotherapy was much more difficult for Arielle to take, and for the first time we felt that we might lose Arielle - not to the disease, but to the chemotherapy. But without it, we knew she didn't stand a chance. Because Arielle had already failed the most aggressive chemotherapy given to kids with ALL, a Bone Marrow Transplant would be her only option. In order to undergo a BMT, children must first be in remission, and they are expected to go into remission within a month from diagnosis if they are to have a chance.

We were shocked and dismayed to find out that Arielle had NOT gone into remission after the first month of chemo. Another month went by, and her leukemia was continuing to grow. Miraculously, Arielle felt well through all of this, and her cheerful disposition, sweet nature, and positive attitude is what kept the rest of us going. By October '00, we were told that we could stop the treatment at that time and let Arielle pass away. We talked it over with Arielle, but none of us were ready to give up the fight. Even through all of this horrible chemotherapy and disease, Arielle was still a happy, active little girl. Because of this, we couldn't give up on her.

By the middle of October, our doctors had come up with one final combination of especially high-dose drugs to try to get Arielle into remission. By the middle of November, we found out that the chemotherapy had helped, reducing her blast count from 70% to 15%. We decided to repeat the round of drugs one more time the first week of December in order to hopefully get her into the necessary remission.

We were happy to find out Jan. 5, 2001, that Arielle finally had less than 5% blasts in her marrow, which is considered a remission! A perfect donor match has been found for Arielle on the International Bone Marrow Registry (the doctors do not want to use her identical twin as a donor - the theory is that there is a "graft versus leukemia" effect that could help Arielle win her battle, and she would not get this if her twin were her donor) and she should be going into the hospital for transplant soon.

Because it took Arielle 5½ months to attain remission, her prognosis is especially poor.