Doug's Story
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 Children's Hospital of Iowa and eventually Dance Marathon.
Doug started treatment on June 30th 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 9th 2004 when a routine visit to his pediatrician revealed a blood count that revealed 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 had been 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 4 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... this resulted in his getting a feeding tube thru his nose and he ended up on 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 our's 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; he excelled in it. On November 6th Doug not only went to school that morning but he went to WalMart 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 14th 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 3rd, 2006 at 8:52 in the morning that's exactly what happened. Cancer had beaten our son; had taken our child from us. He had fought his battle bravely and with such determination! Up until the very end Doug was convinced that he was going to beat cancer. We wish with everything that we have that he could have.
Unfortunately, Doug lost his battle with cancer. Doug passed away December 3, 2006.
