"Music Gives Hope and Joy" by Jan Klooster

Brain Tumor Foundation of Canada - Brainstorm Newsletter, Winter 2000, Issue 47 Music Gives Hope and Joy! A STORY ABOUT DANIEL CHRISTOPHER STEVEN By Jan Klooster. Editor’s note: This account has been written by Dan’s mother and is lovingly dedicated to honour Dan’s love of life and his gift of music. Jan and husband Rick serve as Conveners for the BTFC’s Brain Tumor Support Group in Chatham

Dan is a 23 year old Christian singer-songwriter-guitarist from London, Ontario who has been writing songs ever since high school and reaching people of from all walks of life with his music. He has traveled the continent, often busking for his necessities and playing his songs in coffeehouses, in concerts, and on streets all over North America, from Halifax to Vancouver to San Francisco. So it is as a lover of music, people, and spirituality that Dan is most well-known --- but now also as a brain tumor survivor.

Because the diagnosis and intense treatment schedule of a brain tumor caused Dan to resign from his job, he refocused his life on what was important and began fulfilling his dream...... to record his music and give others hope and joy. In January 1999, the fingers of his right hand began to jerk randomly for short periods of time, and he could not make them stop. Over the next two months, what we came to know as simple-partial motor seizures increased in length of time and frequency, until they were occurring continually, also involving his right arm and eye. During this time, he experienced nausea, especially in the mornings, headaches, and general unwellness. Work became very difficult. On March 18, 1999, Dan had a Jacksonian March seizure, in which the jerking activity traveled from his fingers and arm to the whole right side of his body, culminating in a grand mal seizure. He was rushed to the local hospital, put on Dilantin, and given a CT scan the next day. The CT revealed a troublesome "spot" - possibly signs of a stroke, a scar, or a lesion. An EEG the next month was normal, but the neurosurgeon to whom he was referred ordered an MRI. The MRI appeared to show a slow-growing tumour, but in order to get a clearer diagnosis, the neurosurgeon performed a stereotactic biopsy.

In May 1999, Dan, at 22, was diagnosed with an anaplastic astrocytoma, a grade three glioma, in his left frontal-parietal lobe. It was a fast growing, aggressive, infiltrative tumor on the motor strip, and therefore inoperable. Dan was referred that day to a neuro-oncologist for chemotherapy and to a radiation oncologist for radiation. Treatments were started immediately and aggresssively. Dan began 7 rounds of PCV, the standard treatment for aa3 glial tumours, from May 1999 to March 2000, . In addition, he received six weeks of whole-brain conformal radiation from June to July 1999. Chemotherapy left Dan extremely fatigued, and twice the next round had to be delayed due to low blood platelets. Radiation caused confusion, disorientation, clumsiness, and loss of short-term memory. The weakness and loss of sensation in Dan’s fingers remained. Dilantin levels had to be adjusted several times to control the tonic, motor, and sensory seizures which also continued. Phenobarbital was eventually added, resulting in cessation of the seizure activity. In spite of the side effects, the treatments have been effective in stopping tumor growth, even causing shrinkage. MRI's in Dec., Feb., and June 2000 have showed "stable tumor". As the months progressed, Dan’s nausea decreased and he steadily developed more energy and clarity and better well-being. Although initially Dan had to resign from his job, he believes that his deep faith in God has led him down a different path and that “God set before me another opportunity, a much greater mission - music.” Toronto music producer, Doug Romanow, worked with Dan to record ten of his songs. The final product, Beggars and Kings, is now finished and available. Dan faced many obstacles throughout the recording sessions, but he overcame them all with grace, courage, ingenuity, and prayer. When he could not play his guitar because of right-handed weakness, other musicians were hired to play the instruments while he sang. Many times he had to reach deep down and up to find the will and energy to continue, particularly on the weekends requiring intensive recording sessions. Again his strong religious faith in God gave him strength, and his music is blessing the lives of more people than ever before, in Canada, the United States, and as far away as Australia and Europe.