When It All Started
My husband Tim and I were both working full time and had just bought our first family home a year prior. Dylan had started his first year at school and was loving it. Cain (his brother) had just started in his first football team and both Dylan and Cain enjoyed swimming lessons every weekend, life was great. We had just settled in and decided to plan for our very first family vacation to another state in Australia (Queensland) where they have great theme parks for kids. Both Dylan and his brother were so excited, but a month before the scheduled vacation, Dylan became sick and we were forced to cancel the plans. The kids were devastated and Tim and I knew the battle that lay ahead of us.
I was forced to stop working as Dylan was in hospital 80% of the time. As our income halved, we were under threat of losing our beloved home and were preparing to sell it, but the bank surprised us and cut our mortgage repayments in half for 12 months, so we were able to keep our home and meet the repayments. Cain became a different child as he knew the seriousness of Dylan’s condition. Cain didn’t know how to deal with his emotions and cried all the time at home and was in a lot of fights at school. He started running away from school and he stopped eating. Cain could not even bring himself to go to the hospital to visit Dylan and still can’t to this day. Dylan coped better than all of us. When the doctors told us of the extent of Dylan’s cancer and that he had a less that 25% chance of survival, our hearts just broke. The first few weeks were a blur. I didn’t eat or sleep and things people said to me just went in one ear and out the other. After a while I then realized that I had to deal with this situation the best way I could, so I studied Dylan’s condition and spent hours and hours on the internet. I looked at Dylan for strength and to this day, he is what keeps me passionate about never giving up and to believe in hope and dreams. Dylan was diagnosed with stage IV Neuroblastoma in July 2004. He endured many procedures and 5 rounds of chemo therapy over a 5 month period in Australia. In December 2004 we were told that Dylan’s condition had only responded slightly to the treatment and that his chances of recovery had dropped to under 10%. We were told Dylan had numerous Neuroblastoma affected bones including his skull, spine, pelvis, arms and ribs and also hi bone marrow. His abdominal tumor was wrapped around both his renal arteries and that surgery would not be done in Australia while he had so much bone disease. Through all the research I did on the internet, I knew the only chance for Dylan would be in New York at Memorial Sloan Kettering Cancer Centre, where they treat and research more Neuroblastoma than anywhere in the world. I also knew that was where Dr LaQuaglia was, a world renown surgeon who does more Neuroblastoma surgeries than anyone else in the world. I also knew that there were several clinical trials available one of which is called 3F8 monoclonal antibodies. No clinical trials for Neuroblastoma were available in Australia, nor could they be brought from America. The doctors in Australia told me that I could never afford to have treatment in New York and that the impact on our family would be too difficult. I set out and pursued the only chance I knew of for my son. I made contact with New York myself and they told me I need a minimum of $350,000 U.S which is approx half a million Australian dollars. I planned to have a consultation and fly to America while a campaign continued in Australia to raise the funds. But I discovered that they wouldn’t allow me into the country without proof of sufficient funds of anticipated treatment. The doctors in New York told me that Dylan needs treatment right away or his condition could kill him in as little as 2-12 months. We frantically started a campaign to raise the money on 19th December 2004. The busy Christmas season proved difficult for the campaign and then on 26th December the Tsunami hit and we were unable to get any media coverage for Dylan. But somehow, after a lot of tears and perseverance we managed to get some media coverage after a few weeks and then it was madness. Every morning at 7am the phone would start ringing and not stop until 10pm at night. We were on heaps of radio stations, newspapers, magazines and television stations. Slowly the money came in. We had to open a trust fund, find lawyers, get charity licenses and a tax deductible status for our cause. We worked around the clock and formed a team of dedicated people to organize fundraising events and issue thank you letter and receipts to all our donors. We received thousands of letters, gifts and cards. We were exhausted. Through all this Tim had to continue to work to keep paying the household bills and put food on the table. Then unexpectedly we received an anonymous donation of $175,000 and that sent us on our way to New York. Someone paid for our airfares and another company donated the sale of a block of land that fetched $139,000. On the day we left Australia we had television crews at the airport! People we didn’t even know, who had been following the story turned up at the airport with gifts and support. On 26th January we arrived in New York City at Ronald McDonald House. After many tests and a stem cell harvest, Dylan had an 8 hour operation on 9th February to remove his complex tumor and it was a great success. All seen disease is gone from his abdomen. Now our biggest challenge begins, to remove the Neuroblastoma cells from his bones. Dylan’s marrow is clear but he still has a large amount of affected bones. He had undergone one round of chemo after surgery (making it round number 6) but it did little to change his bone disease. The doctor said his chances are low but they have 2 more chemotherapy agents to try. If they don’t work we can try MIBG and arsenic treatments and radiation. Then there are many clinical trials to try. They also said there are new trials on the way. So we live in hope, far from home and away from our loved ones. Our new life in New York is scary, but it is what we have to do at this point in time. My heart tells me we are in the best care possible[Top of Page]