Not flesh of my flesh, Nor bone of my bone,
But still miraculously my own.
Never forget for a single minute,
You didn't grow under my heart - but in it
--- Fleur Conkling Heylinger

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.


November 1st, 1991 was the day Daniel was placed in my arms. I was not in the maternity ward of a hospital and he was not a newborn. I was in my living room; Daniel was 5 months old, and he was handed to me by a social worker. He had been placed in the custody of the state because at that time, his parents were unable to take care of him. I agreed to foster him, without giving it much thought. The shock occurred when the social worker left the house and I wondered to myself 'What have I gotten into now?".


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.


January 5th, 2002 found us at Maine Medical Center, being told that Daniel had cancer - Primitive Neuroectodermal tumor (PNET). There was a mass on one of his ribs that was not only growing, but also producing a fluid that was filling his chest cavity.
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
Florida for a long-promised vacation in Disney World. January 5th Daniel was admitted to an Orlando hospital where the next morning, his heart stopped. The doctors and nurses were able to resuscitate Daniel and he and I flew home on a med-evac on January 10th. The rest of the family flew home on January 11th, and Daniel died in the early hours of Monday, January 12.

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.