Ben’s Story
The 10th of December 2000 was the much anticipated and much awaited day that Ben arrived, a little late but in his own time. He was a beautiful baby and from the very beginning had a mind of his own. He would drink when he wanted to drink, not when his distressed mum and the doctors and nurses wanted him to.
As he grew Ben had a fascination for nature and everything in it, or that had been in it. Dinosaurs were one of his favourites and by the age of 3 years he could name them all from the slightest sight in a book or on a poster. Sharks and whales were also his fascination. Again he could name them all although on a visit to SeaWorld shortly after his third birthday he announced that the dolphins had upset him and that was it, he could no longer watch their show!
Ben loved books and having bed time stories. He loved to play and watch his favourite movies or make a visit to the Wiggly Play Centre or the local park. He loved the garden and helping with the cooking. He would help to nurture the plants and grow herbs and vegetables from seed and then pick and help cook with them. He loved the beach and swimming. I guess he was a normal, inquisitive little boy, but he was also a very considerate and thoughtful little boy who loved his little brother from his arrival.
In 2006 Ben started “Big school”. He loved the computer room the most, so Wednesday’s were his favourite day. He loved sport and wanted so badly to play soccer with all the other boys. He started Little Athletics in September 2006, but sadly was only able to make 4 weeks when his life changed forever.
Ben had occasionally complained of sore legs, like many children do and a quick rub with some “magic cream” would always sort it out. But in September 2006, he started having pain in his abdomen and so we took a fateful visit to our GP; and so started our journey with childhood cancer .
After several tests Ben was diagnosed on 27 September 2006 with Neuroblastoma Stage 4, a very aggressive form of childhood cancer. Watching the Oncology doctors walk towards me on that day was like watching the “Scarers” enter the scare floor on the movie Monsters Inc. With solemn faces and great compassion they told us that our little boy had only a 30% chance of survival regardless of what treatment they could throw at his disease, but there are always advances and who knows what would be around the corner. We decided that we owed Ben the opportunity to fight and not to give in to this disease without a battle and so the battle lines were drawn and the war begun.
I spoke with Ben about the “lump” that had grown in his body and how we would fight it together and he agreed that it was a battle we should fight and we also discussed what would happen if the lump won………
When your child is diagnosed with cancer, the medical teams provide so much information that is difficult to absorb at first but becomes second nature once treatment begins. Even Ben could name all the drugs, the tests and knew what his side effects would be. Ben endured just about every side effect of chemotherapy that was written down plus a few that the medical teams were not expecting. We spent weeks and weeks at a time in hospital, either having chemotherapy or recovering from the side effects of it. Ben was very slow to recover, but maybe this was a good sign – if the chemo was knocking him around so much surely it was doing the same to the cancer…..
After 5 rounds of intensive chemotherapy, Ben underwent surgery on the remaining tumour in his abdomen. He was in surgery for 7 ½ hours and lost 50 – 60% of his blood volume, but they could only remove 50%. We were devastated. I told Ben and we agreed to fight on. The final round of Chemotherapy came and went and then he went into bone marrow transplant, where a super high dose of chemotherapy is given to destroy all bone marrow and then it is replaced with new cells, in Ben’s case his own stem cells. Just a few days into the transplant Ben caught CSV, a common virus that most of us have many times in our lives but for a child in transplant potentially fatal. He was transferred to the infectious diseases ward and there underwent treatment inside a special tent which was placed over his bed three times a day for three hours at a time over a two week period. Slowly he started to recover and the virus went away. After 5 weeks we were allowed home and Ben was so happy and so full of energy – better than we had ever seen him. He started radiation therapy and we went everyday for 5 weeks while they irradiated his abdomen and left leg.
Throughout all of this treatment ongoing scans had shown good news, the tumours which had been throughout his body were shrinking – the chemotherapy was doing its job………….
Then in September 2007, after the post radiation therapy scan, we were told the unthinkable…the cancer had returned and in a new location…….Ben now had a less than 10% chance of survival. And so another choice had to be made … do we keep trying or do we let him go…………..
Ben appeared so well and so we gave it one more chance.
We started a form of treatment that involves a radioactive isotope of iodine, which has very few side effects but targets the tumour directly from the inside. Ben underwent two of these treatments and then following a scan his specialist called me in to say that instead of slowing down, the cancer was mutating and grow very rapidly, he said that if there was anything special that I wanted to do with Ben then organise it now, so that it would happen in the next few weeks. Our time with our beautiful boy was now running out….
We organised Ben’s Make a Wish which was a trip to the Gold Coast and we filled everyday with theme parks, beaches, glow worms, restaurants and as many things as possible that Ben loved. We came home and a week later thanks to the love and generosity of friends and people that we did not even know, we threw Ben the biggest 7th birthday party ever. 80 people, a clown, a face painter and Spiderman everywhere. Ben described it as “the best party ever”.
We managed to get him back to school for a few hours a few days a week, as he craved his friends and the experience of being back at school.
The day after his 7th birthday, he took a rapid turn for the worse. He underwent some radiation therapy for pain relief and required transfusions of blood products every two days. He had one last treatment with the radioactive iodine, so that we could have our final Christmas together.
In the New Year, with the entire family exhausted and Ben wanting so badly to be on holidays like all his friends we took a trip to Bear Cottage at Manly. We had intended to stay only a week and ended up there for nearly two as Ben and his brother loved it so much. It was here that our beautiful, gorgeous son left us on Friday 25th January 2008 at 6.15pm.
Ben was so very brave and strong throughout his battle and it is ironic that his favourite games on his beloved X-Box were all battle games: Call of Duty, Spiderman, Ulimate Alliance, Battlestations – a metaphor for his own battles, which while so bravely fought were sadly unable to be won.
I miss my Ben every day, his wicked sense of humour, his inquisitiveness, his companionship and his love.
Ben’s Mum, Melissa.