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 Nicholas Butters Born 6th July 1990 ~ Taken to Heaven 8th December 2004 With his soft blonde hair, flawless skin and delicate features Nicholas drew admiring looks. His older brother Coen cherished him and his younger brother Alex adored him. The world was Nic’s playground, he explored, digested, questioned all around him. It was obvious to us as a family and all who knew him that he was wise beyond his years. All through his life Nic was the most loving, caring, gentle boy. He loved life and gave to all he met. Nic’s strength of character enabled us, as a family, to cope with the challenges of his treatment. Nic’s nine year battle against cancerous brain tumours did not diminish his spirit. Surgery, radiotherapy, four lots of radiosurgery, five bouts of intensive chemotherapy, immense pain and suffering only intensified Nic’s fortitude, trust, giving and passion. He never ceased to amaze all around him with his ability to deal with adversity without his loving, good nature faltering. His life although far too short was filled with love and courage. Nic’s sense of humour and his ability to make those around him laugh coupled with his zest for life inspired all. He gave unconditional love and happiness to all. Nic loved playing games. Board games or card games would end with Nic as the ultimate winner. Alex and Nic would play all day long entering an exclusive imaginary world. Nic’s gift to us was being able to share his life. The memories he has given remain richly vibrant and his love is felt every day. As Nic began to succumb to the tumours he made sure that each day was filled with happiness, he never complained, he only asked that we hold his hand and walk with him as he guided and filled us with his compassion, warmth and understanding. His fight for life was so remarkable that his last breath was one of disbelief and shock. We cradled him as he quietly passed away. His serenity and beauty enveloped us all. Nic is sadly missed, his love and life we carry with us always. Rest in Peace our precious, beautiful Nicholas. Nic’s Journey 1996 - Nicholas bounded through the gates to commence Kindergarten. His new shoes shone, his smile was radiant. He was ready to conquer the world. Three months later his enthusiasm extinguished, he dragged himself to school, hoping the vomiting would not disrupt his day. What had happened to his infectious laugh, his desire to wreck havoc in the playground? With increasing bouts of nausea, watching the colour drain from his face and frustrated by weeks of doctors telling me he had a virus, I decided to take him to the John Hunter Hospital. I thought that a short visit, a diagnosis of some obscure infection, a course of antibiotics and soothing words would see an instant recovery. As we approached the hospital his condition deteriorated, he began complaining of a headache and sensitivity to light. It was obvious to the clerk that Nicholas was extremely unwell. A bed was found immediately. As Doctors reviewed him and hushed conferences ensued I felt confident in my naivety that illness could not touch my family! As they took him for a CAT scan meningitis was mentioned. That's OK I thought, children recover quickly. As we sat in a darkened room, a group of important looking Doctors entered the opposite bay, I felt sorrow for the sick child they must be attending. It did not occur to me that they were there to see us. As they beaconed to us my heart stopped and the world revolved in slow motion. The image we saw on the screen, the words that our son had a brain tumour were incomprehensible. Cancer not our beautiful five year old son! The following days passed in a blur. Nicholas underwent eight hours of surgery, when he emerged in ICD, his head swathed in bandages, his innocence laid bare. His battle had just begun. Nicholas made a remarkable recovery from the operation. Ice cream played a large role. Still numb we grappled with the enormity of the treatment. Six weeks of radiotherapy followed by twelve months of chemotherapy. The life we took for granted was shattered. Nicholas is the middle of three boys separated by two years. It was difficult to tell them their brother had cancer. Coen, seven at the time, took control "Nic will be fine mummy". Alexander, at three, was unsure about how to respond. From the outset we attempted to keep life as normal as possible. Craig would take night shift; I would stalk the hospital by day. We made an invincible team. With the help of family and friends and the caring staff at the John Hunter Hospital we made it through the regime. Stronger as a family, resilient, conscious of life's frailties. I see Nic vividly, as if the day is yesterday, even now, eight years on, running across that playground of kindergarten, his bald head shining, his legs so painfully thin, yet his smile illustrious, his courage inspirational, his hope contagious. Our lives slipped back into normality, yet our outlook on life had altered, Seize the day became our motto. Our cheeky little boy was moving forward, his zest for life, his inquisitiveness returned with vigour. Known as the boy with a thousand questions he was frustrated by his inability to learn to read, remember simple tasks or make a decision. Within the nurturing environment of Jewells Primary School, Nic recognized his academic limitations not as a deterrent to learning but as a tool to discover methods to expound his knowledge. His belief in himself elevated him above academic inadequacies. We never ceased to be amazed by Nic's positive self-esteem, his self confidence, the lessons in life he teaches us, the people he touches, the pleasure he gives all who know him. He never asked us to share his pain only to hold his hand and feel his beauty. With experience and knowledge we recognized a relapse might occur, the tumour might return. Yet, you never prepare yourself for, "sorry we've found another lesion". Hours spent searching the internet for any information pertaining to medulloblastomas, their treatment, studies, trials, management, anything that could give us hope that a "cure" was attainable, that more time could be bought. Hope propelled us on. We agonised over all treatment; the decisions never easy. Our goal was never to trade Nic's quality of life, allow him to enjoy, experience life to the fullest. 1998 - The heart break of hearing the cancer had returned, another tumour. "Don't worry mummy, you will be fine." Nic gives me the encouragement! Treatment would be in Sydney Children's Hospital under Dr Cohn; intensive, aggressive and frightening. High doses of chemotherapy followed by stem cell infusion (take him to the brink and then save him). I watched as the cytotoxins infiltrated his body, ebbing his strength - Nic' s tiny body doubled in pain. As he battled the drugs being infused we were once more awed by his courage, his determination, his unfailing trust in himself, us and his doctors. We were humbled by his strength and courage. Nic again won the battle, stealing the hearts of all he met, the ward staff and the staff in ICU, where he spent considerable time. Nic defied the odds and after stereo tactic radiotherapy with Dr Smee, he returned to living life to the fullest, dreaming about the future planning for tomorrow. The intensive treatment, the drug regime and the radiotherapy rendered Nic oxygen dependent. Nic was attached to oxygen 24hours a day. A concentrator at home and at school; oxygen bottles for mobility. Not allowing this to restrict his life, he swam, explored and rode every ride at Movie world. Nic would will the oxymetre to give him his independence. Doctors unsure as to the progressiveness of his interstitial lung disease informed us that at best the disease would stabilize. Nic was not about to allow this prognosis defeat him. He doggedly avenged ill health and surprised everyone by regaining his strength. The oxygen bottles were discarded. I watched as he ran with his brothers, chasing them in the yard, swimming, hanging upside down at gymnastics, playing with his many friends. His courage was inspirational. Nic never questioned the disease, he was always aware of his condition and asked many questions regarding his treatment, he never said no, he never said, "I have had enough. why me?" Nic never cried; Nic carried us through. 2000 - The dreaded words resonate. We gather strength to once again make decisions pertaining to the right course of action. We are guided by Nic and his Doctors. We have come too far to give up. Hope will never fade. More Chemotherapy, this time a drug Topetecan, intrathecally delivered through an Omar reservoir, directly into the brain/spinal fluid. This would entail twice weekly trips to Westmead for treatment over six months. Although we did not complete the protocol by undertaking more intensive chemotherapy (to not trade Nic's quality of life), again with stereo tactic radiotherapy under Dr Smee the tumour shrank. Nic's determination again shone through. Six months off treatment, the effects of such large doses of chemotherapy and radiotherapy were evident. We set about assisting Nic to reach his physical potential with growth hormone replacement. Still with sparse hair growth (six years with little to no hair), wearing dual hearing aids (these we saw little of due to Nic's desire not to appear different!), an inactive thyroid, poor renal function and short stature, growth hormones were commenced. The round face, the lethargy, the dry skin and the little rolls of fat began to disappear. Unfortunately with the changes came another tumour. "Sorry, we have found another lesion." More stereo tactic radiotherapy. Nic had become a regular patient of Dr Smee. More heartache. Nic still smiles seeing the future bright, never believing that he would not be cured. Nic uses mental imagery to destroy the cancerous cells, an army of ‘pac men’, ridding his body of foreign cells. 2004 - Eight months on Nic is brimming with life. He starts High school with enthusiasm and the desire to excel, to charm, to steal more hearts. Once again we hear the words that penetrate to our core. "Sorry the disease has spread, there are multiple lesions within the ventricles and spine." Shattered, we ride Nic's courage to enjoy each day, to ensure Nic completes his journey with happiness, fulfilment and achievement. Our family is strong, we trust our strength and draw courage from each other. |
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