I am Daniel's mother. It is a position that has provided shock, frustration, anxiety, and some of the greatest joy and pain I have ever experienced.
The frustration and anxiety came later, as Daniel became a toddler and preschooler, then an elementary student. He was prone to angry, sometimes violent outbursts and the only predictable factor each day was that sooner or later there would be an unpleasant scene. He did, however, have the wonderfully redeeming quality of sincere regret and a loving, affectionate nature that was often at odds with his behavior. He was indeed his own worst enemy.
We adopted Daniel in June of 2000. His mother, with his best interests at heart, relinquished custody of her son, so that he could stay with us. She did not want to force his removal from a family he had been with for so many years. She continued to be involved in his life and he loved her very much.
The next two years were painful and long for all of us. They were also joy filled and all too short.
Cancer had a profound hold on Daniel. He had three ribs removed initially; nine months of chemotherapy and six weeks of radiation. We spent much of our time on the Barbara Bush wing of MMC. He had a recurrence in April of 2003 which required two more ribs to be removed, followed by stem cell rescue and transplant in August of 2003. (His own stem cells were harvested, then replaced after a high dose chemotherapy treatment) He spent weeks in isolation in the hospital, followed by months of restrictions at home. He suffered heart damage from the treatments. And after all of this, he had another recurrence in December of 2003. By now we knew that PNET was a formidable opponent which would probably win the fight for Daniel's life. January 4th our whole family flew to
But that isn't the whole story. Cancer won the fight for Daniel's life, but not his spirit and we hope, not his legacy. You see, when he was first diagnosed I wondered how a child with Daniel's level of anger and frustration would ever cope with such an illness. But he did more than cope - he conquered. He was able to be the person he had tried so hard to be - a loving, compassionate, sociable kid. When faced with the greatest of all challenges, he came into his own. Yes, there were moments when he regressed, but they were fleeting. He learned about his illness, he entertained hospital and clinic staff, he developed friendships at school when he was able to attend. He became buddies with our pastor.
He even told me that cancer wasn't all bad. He went on to talk about people who cared for him. We were blessed by the doctors and nurses at the hospital who tolerated his remote controlled _ _ _ _ machine (I'm not supposed to use the word, but it means the noise made by some of us after eating gassy food!). His doctor Tia, who has the coldest hands known to mankind, also has the most loving of hearts and he knew she cared about him and hated what he was going through. Dr Craig called him CoolBreeze, and the pediatric surgeon wore Buzz Lightyear lab coats. Daniel developed a special empathy for the mother of one of his friends who had earlier lost her battle with leukemia. He treasured some precious friendships and loved his family - immediate and extended. He was happier in those two years of treatment than he had ever been in his life. Some of us rise to meet challenges - others of us fall under the crushing blows life deals us. The Bible says 'a little child shall lead them', and indeed, Daniel led us. (Isaiah 11:6)
Months have passed since Daniel's death and we struggle with the changes that has brought to our lives. We received an insurance check and didn't know what to do with it. After a great deal of thought, we put it towards building a cabin on land that we bought while Daniel was ill. He loved to go there, and we would talk about someday having a cabin built. But the cabin will now have a different purpose. It will be made available to the oncology team who treated Daniel. They will be able to send families who have a sick child, or who have lost a child and need to get away to a quiet place. Our hope is that some of the courage and strength portrayed by Daniel will be in this place, and that other families will find solace and comfort there.