Daniel’s Story

Daniel was a beautiful child. It wasn’t just his angelic face and beautiful blue eyes. He possessed a beauty and gentleness of spirit anyone could recognize. Committing an unkind act or dishonest deed would never have occurred to him. A harsh or hurtful word was never spoken. Except to his Mom, when she would remind him to brush and floss his teeth. ‘Mom, you’re a pain!”, he would exclaim. Daniel embraced life and loved his God with all of his heart.

Second only to God, was his older brother Davy. Though there were fifteen years between them, you would never find two brothers who loved each other more. Playing video games and wrestling were some of their favorite activities. Daniel admired and emulated his brother. One day, when he was three or four, he was playing Power Rangers; which were his favorite super heroes. Davy was away at college and he was playing alone. I made the comment, ‘Daniel, you are a Power Ranger!” His reply was, “no Mom. DAVY is a Power Ranger!”

Daniel was also a nine year old, self taught, shark expert. He loved and was captivated by sharks and all sea life. Daniel loved living on our farm. He harbored a fear we would someday move from the place he loved most. “Mom, we aren’t ever going to move from the farm, are we?” “No, Dan. That is something we would all have to agree on.” He smiled. That seemed to satisfy him. Daniel loved basketball and soccer. When Daniel was five years old, I asked him if he were interested in playing hockey, like Davy. His comment was, ‘Mom, I’m just not a hockey kind of guy.” He knew his limitations. He was a long legged, thinner child and not the type he envisioned as hockey material. Daniel was our gift from God. We knew it and remarked on it countless times. I thanked the Lord for His gift of Daniel every day of his life.

In the summer of 2005, Daniel was nine years old and looking forward to the fourth grade at his Christian School in Willmar, MN. He came down with what we thought was a summer flu. He never really got totally well after that. He was frequently nauseous with vomiting, sometimes severe, and occasionally a headache. It never went away and we spent the next months taking him to the doctor and even on a couple of occasions the emergency room. No one could find anything wrong. He was worked up with lab work, x-rays, and a CT of the head. They found nothing. That gave me a false sense of assurance. We did not know until later that the CT did not include the brainstem. I never even thought to ask that question.

Daniel started the fourth grade that fall. He had been so excited about that grade, since the teacher had also been Davy’s fourth grade teacher. Mr. Saint was the coolest teacher at the school with snakes and everything in his room. December was a difficult month for Daniel. He was frequently ill and was having a difficult time keeping his school attendance up. I felt at a loss and didnt’ know which way to turn. No one could tell me what was wrong with my baby and I had the deepest and most desperate feeling of impending doom. How I wish I had packed him up and taken him to the Children’s Hospital in Minneapolis or to the Mayo Clinic in Rochester. Not being a pediatric nurse I just didn’t know any better. I thought our local hospital and the local pediatrician and family practice doctors would know if something were truly wrong. Wouldn’t they? It wasn’t until the day after Christmas that I knew the answer to the question which had for so long evaded us. His face looked different. I asked him to kiss me and his pucker was lopsided. Only one side of his face moved. Now I knew. We were dealing with a neurological problem. We returned to the emergency room and a second CT revealed a very large brainstem tumor. I had to maintain a strong face for Daniel. “Mom, did they find out what is wrong?” “Yes, Honey. There is a growth in the back of your head and they have to make a cut and take it out.” “Oh, okay.” The exchange was so matter of fact without a tinge of fear from our Dan. The ambulance ride to Minneapolis Children’s Hospital was the longest, and most achingly painful ride of my life. It was nighttime by then and I had never felt so alone.

Daniel’s tumor was embolized on New Year’s Day. This is a procedure to cut off some of the blood supply to the tumor and minimize the bleeding that might occur during surgery. The procedure would leave him with what was essentially a stroke, but the radiologist felt he would do well with rehab post-op. He should regain most of what he was about to lose. The procedure itself was not without risk, so the surgery to remove the tumor could be no sooner than twenty-four hours post embolization. Daniel was sedated and ventilated from that point on. After a very long and sleepless night, Daniel’s surgery to remove the tumor was performed on January 2, 2006. The surgery was difficult and lengthy. Dr. Nagib was exhausted, but fairly confident that the tumor was not cancerous. We would have to wait for the pathology report for the final word. There were complications in the ICU. Daniel did not do well post extubation, or removal of the breathing tube. The tube had to be reinserted and it remained in more days than is considered desirable. . Due to this, a vocal cord was injured necessitating a temporary tracheostomy.

Once Daniel had the trach, he progressed and healed quickly. Daniel was very weak and his balance was severely affected by the stroke. He worked hard to come back. Daniel’s best therapy of all was when his brother Davy came to play their favorite game, Yugioh cards. It forced Daniel to sit up for fairly long periods of time and use his weakened arm and hand. Three weeks after surgery Daniel came home with much fanfare. Davy was taking a semester off from Veterinary School to help with Daniel’s cares. No boy could have been happier. The pathology report came back. The result was a cancerous tumor called an Ependymoma. Radiation therapy was the treatment of choice and the cure rate for this type of tumor is quite high. A spinal tap was performed to ensure there were no cancer cells in the spinal fluid. If there would have been it would have necessitated radiation to the spine. The spinal fluid was clear-no cancer cells. The radiation therapy went well. There was no pain. A mold type of mask was made for Daniel’s face and he was bolted to the table to ensure no movement. He was a trooper and never complained once. He received a long series of treatments. The drive back and forth from home to Children’s Hospital was two hundred miles. This we did three times a week.

In the Spring we celebrated Daniel’s 10th birthday and the end of radiation therapy. Things were going well. Daniel was healthy and strong and the situation looked so hopeful. He still had the trach and a gastrostomy/jejunostomy tube which had been placed for liquid feedings. This was a temporary situation as he would be eating soon. The tracheostomy and feeding tube came out in the summer and life returned to normal. He was now able to eat the favorite foods he was denied for so long. We celebrated with a pizza party at his favorite restaurant, Space Aliens.

In November, he started complaining of low back pain. Daniel’s oncologist ordered an MRI of the spine. I knew the results before they told me. I could read it in the eyes of those around me. Daniel now had metastasis to the spine. This would require another long course of radiation. On the ride home Daniel asked what they found. He asked me if the tumor was back. I said yes it was. He was silent. He knew it meant more radiation. Radiation this time was not pain free. It made him severely ill with abdominal pain and severe diarrhea. I felt between a rock and a hard place in this. Putting my precious child through this was so devastating. But, it was radiation, or he would not be able to walk and there would be no hope at all for a cure. Daniel never complained once throughout this horrendous ordeal. That in itself still causes me pain. To think he took whatever came his way, no matter how terrible, without a complaint.

Spinal radiation was completed and plans were made by Dr. Nagib to perform surgery to remove the remaining tumors. There was a two week delay to gather all the special equipment needed to perform this intricate surgery. During that period of time Daniel’s back pain returned with a vengeance. His legs were weak and he had difficulty walking. Another MRI showed the tumor returning with a more rapid growth than before. My husband, Dave and I made the decision with Daniel’s surgeon and oncologist to cancel surgery. The tumors were too vigorous and unrelenting. Daniel received a few last radiation attempts with a good response. However, he became more symptomatic and it was found the cancer had spread to his cranial nerves. This was the beginning of the end.

This dreadful disease took every independence from him. He became paralyzed on one side and eventually both sides. He couldn’t swallow, so he couldn’t eat or drink. He couldn’t speak, and he was blind in one eye. But he was aware to the very end. We had some special, but emotionally heart wrenching time with Daniel. His daddy sat in bed with him and read and talked to him. I prayed with him and talked to him about our amazing God. His faith was unwavering. He knew God could heal him at any moment, if it were in His will. We never spoke of death. Our conversations were always very hopeful. Davy was home from Vet school again. And this time his girlfriend, Alicia, who would become his wife, came too. It was definitely in God’s plan for her to be there with us. Her support was an incredible blessing. Members of my family came from California. Auntie Pammy, Uncle Allen, cousins Julie and Susie, and Uncle John and Aunt Kathy from Kentucky.

Daniel passed away, on the farm, March 5, 2007. He was eleven years and four days old.