dmag

Dance Marathon Alumni Group

Our son Doug was born September 22, 1998; he was diagnosed with Acute Lymphoblastic Leukemia on June 30, 2000 when he was 21 months old. Up until that time he had been a healthy baby. We thought that he had a cold and found out that wasn’t the case and there began our whirlwind experience with the University of Iowa Children's Hospital and eventually Dance Marathon.

Doug started treatment on June 30 and he did his original 3 ½ years before stopping treatment. Those three and a half years were highlighted by multiple visits, and stays, to Children’s Hospital with fevers, line infections, and overnight chemo treatments. Thru everything, Doug was a trooper. He did everything they asked him to do even if he really didn’t want to.

We thought everything was going to be okay until July 9, 2004 when a routine visit to his pediatrician revealed a blood count that exposed his leukemia was back. He was admitted again and again started on chemotherapy, but he was going to need a bone marrow transplant in order to have any chance of survival. Because his sisters and his parents weren’t a very good match, an international search for a donor was started. In September, we were informed that a perfect match was found. Doug was prepped for his transplant and received that on October 8, 2004. We had been told that transplant was usually plagued with many side effects and complications and we were told to expect for him to be an inpatient at the hospital for at least a month, more likely two. Doug went home 17 days post transplant…he didn’t have any of the predicted side effects. At the time, we thought that was lucky; we changed our minds less than a year later.

On July 18, 2005 we found out that the leukemia was back once again! Even though the bone marrow was a perfect match, Doug’s strain of leukemia was stronger than that. He was restarted on chemotherapy and his donor from the previous year was contacted about a stem cell transplant. We were blessed with a wonderful donor who gave Doug not just enough stem cells for his transplant but also four bags in the freezer at the hospital for future needs. Doug received his stem cell transplant on August 26, 2005. This time his recovery was a little tougher and he had some of the side effects and complications that we had been told about a year earlier. He got mouth sores that were so bad he wouldn’t eat which resulted in a feeding tube thru his nose and a Morphine drip for the pain. Even with the complications he wasn’t there as long as we had thought he would be, and he came home on his 7th birthday.

In November and January he received more stem cells in an attempt to help his body keep the leukemia gone. In January, about a week after one of those infusions he developed what was thought to be Bells Palsy; the right side of his face went numb. In February, the left side of his face followed suit. Neurologists were called in to help try to find what was going on. No one knew so it was suggested he get some IVIG (antibodies) on a monthly basis to help fight whatever this was. In March, he developed what is called Drop Foot—his ankle didn’t bend like ours do, so he was having a difficult time walking and often fell. He was fitted for leg braces to help him walk without falling. His leukemia status still seemed to be a remission status. That changed the day after Easter 2006. Doug was in the clinic for a routine check up and another blood test revealed that his leukemia was back again despite everything that we had done for him. The doctors at that time said that they would fight this but that there was only a 1% chance he would ever even achieve remission and that we weren’t talking cure anymore. Doug achieved that remission on June 23, 2006. His summer was plagued with physical therapy and chemotherapy, but he managed to still be a fairly happy little boy.

In August, he asked to go back to school and for the first time in three years he was given the okay to go. Doug loved school and excelled in it. On November 6, 2006 Doug not only went to school that morning but he went to Wal-Mart in Coralville with Kathy from the hospital to pick out and purchase toys for other children going thru treatment. That evening, Doug was in the hospital himself with a fever. That was the last day our beautiful little boy was as close to a normal boy as he could be. His fevers persisted and on November 14, 2006 a bone marrow aspiration was done to see why he needed blood products and why he had no white count. We knew when the doctor motioned for us from the doorway that what they had found was not going to be good. Doug’s cancer was back for a 5th time; his bone marrow was 100% cancer cells and there was nothing that they could do for him. They couldn’t fight the infection because he had too much cancer and they couldn’t fight the cancer because of the infection. Doug, and the rest of us, were in a loss/loss situation. On November 16, 2006 we took our son home from Children’s Hospital for the final time; we took him home to die. On December 3, 2006 at 8:52 in the morning that’s exactly what happened. Cancer had beaten our son; had taken our child from us.

During this whole fight with cancer; our whole 6 ½ year battle, Dance Marathon was there with us. They supplied us with parking passes, calling cards and food cards for the cafeterias; they provided entertainment for our family four times a year; they helped us give our children a nice Christmas by giving our family, and all the other families, a gift certificate to Wal-Mart to help purchase presents. Dance Marathon helped fund the children’s bone and blood transplant ward; and they put laptops in each of those 5 rooms for families and children to have contact with the outside world. Dance Marathon holds activities every evening for the cancer children in the hospital. When the child is in isolation, the students come up and do one-on-one activities with them. They provide many craft supplies on the floor to help entertain the children as well.

One of the things that Dance Marathon does that has helped our family the most is that they provide the funds and the people to hold a sibling support group once a month. This group is designed to help siblings of children with cancer understand what is going on; ask any questions that they are afraid to ask Mom or Dad and be special in their own right, not just someone’s sister or brother. After Doug passed away, our 9-year-old daughter went to a sibling support group and received lots of support and a shoulder to cry on about her brother’s death.