"Your son has cancer" are four words I never want to hear again.
In February of this year (2011) our entire world crumbled down around us. My beautiful, healthy, strong five and a half year old son James was about to start the hardest fight of his life. He had just been diagnosed with liver cancer.
It was during week two of school for the year. He had been pushed over in the playground and came home complaining of a sore tummy. After giving him some panadol and noticing the pain was getting worse not better, I decided to take him to our local emergency centre. The doctors couldn't work out what the pain was from, so we were transferred from our home town to the Womens and Children's Hospital in Adelaide - nearly 80km away. James was kept in overnight and had an ultrasoud the next morning which showed a shadow on his liver. After consulting with the doctors again, it was decided they would do a CT scan later that afternoon. It was after the CT scan was done things went from "happy and healthy" to uncertain and falling apart.
James needed to have a liver biopsy to confirm exactly what type of cancer he had and if it needed treatment or not. The biopsy was done the week following the initial diagnosis. The results came back and YES, James had what was called hepatoblastoma (liver cancer) and that it was quite advanced. This was followed by more bad news - The doctors were not sure how to proceed with his treatment as there are not that many children in the world of this age with hepatoblastoma. Most children diagnosed are between birth and 18 months old.
After a lot of consultation with doctors, oncologists and everyone in between, it was decided that James would start on six rounds of chemo immediately, with a Liver resection to be planned once the tumour had shrunk. The first round started as well as could be expected. The tumour was reacting to the treatment and his AFP's (a special protien found in the Liver that determined the size of the tumour) were going down. That was about the only thing that went our way in all of James's treatment. Round number two did not work at all. James didn't even get sick from the chemo. While most children are vomiting and struggle with reduced appetite, James was asking to eat more and was doing the complete opposite. My husband and I knew there was something wrong, but didn't say anything. Looking back, this was probably a mistake but we were still new to all of it and weren't sure what to say.
Before Round three was to start James had another CT scan and more blood tests to see where the tumour was at. The results came in and our worst nightmares had been revisited. The tumour was growing, not shrinking. Another lot of discussions with the Oncologist and it was decided that James would undergo a new type of chemo that is used in children whose tumour has come back for a second time. We were warned that this treatment came with a whole lot of new side effects - diarrhoea, severe stomach cramps and a feeling of never being hungry. Once again James didn't have the side effects the way we were told. He was admitted to hospital on Easter Monday with severe stomach cramps but we were told they had nothing to do with the chemo. Three days later James was discharged, still with the tummy pains but it was just something we had to deal with.
The week before Mothers Day, James and I had to go to Melbourne to speak with a Surgeon and have an MRI done. Because of the treatment in Adelaide not working, we were passed over to the Royal Children's Hospital in Melbourne for a procedure called chemo-embolisation. This means the doctors inject five beads of the chemotherapy drug directly into the tumour itself. We were there for four days undergoing a lot of tests and doctors visits, and were then told that two weeks later, James and I would have to head back to Melbourne and have this embolisation done and then if all went well, the surgery to remove the tumour. If it didn't work, James would have needed to go on the Nationl Liver Donor Transplant list. By this point we were all hoping and praying that the new treatment would work.
On May 19, 2011, James was admitted to the RCH and had the Embolisation done. We thought it would be a small procedure, but it turned out to be a three hour job done in theatre. When he came out, James was taken up to the cancer ward at the hospital and we were told he would be there for up to a week. During James's time in hospital he developed temperatures of 40 degrees plus and we were all getting worried by this point that once again the treatment wasn't working. Ten days later James had another blood test and his results were the first good results we'd had in AGES. His AFP levels were dropping which meant something was working. James was released that afternoon and we headed back over to our accommodation at Ronald McDonald House where we had to just wait until the doctors decided when they would do the operation.
We finally were given a date for James's surgery – The day after his 6th birthday. At 8:30am on June 15, James was wheeled into surgery. There were LOTS of raw emotions that day as the reality of the situation was finally dawning on me. My child was about to undergo major life threatening surgery. The operation itself could take anywhere from 6-26 hours depending on how badly embedded the tumour was. Nine hours later James emerged from theatre quite sore and very, very groggy.
The Surgeon told us the best news possible - They had managed to get the entire tumour out. Our prayers had been answered. Our child was one step closer to being cancer free. James spent the next three weeks in Hospital and after being in Melbourne for eight weeks we were finally on our way home.
James had a CT scan two weeks after we got home. We thought we were on the home stretch. The scan showed that everything was going well. The tumour was gone, his blood levels were dropping to a level that was consistent with the scan, and we really thought that this was going to be the end. After only two weeks though our happiness was short lived. James's blood levels were rising, so six weeks later James had another CT scan. Our worst nightmare was realised. James's tumour was back, and this time more aggressive than ever.
We have been told that my gorgeous, bright, bubbly, beautiful little boy, has only months to live. This tumour is extremely aggressive and there is nothing that can be done. The tumour is now in his liver in the exact same spot, plus four other spots in his liver, as well as about fifteen other smaller spots in his lungs.
We are now taking time to create as many beautiful memories as we can and make every day of our lives with James special. We don’t know how many days we will have or how long it will be before James deteriorates from his current seemingly healthy state. We want to make the best of every minute we have while he is able, but there are no words to describe the heart break we are feeling more and more as the reality settles in.
We have just arrived home this week, after a wonderful eight day holiday on the Gold and Sunshine Coasts thanks to the Make A Wish Foundation. It was James's last wish to go to Sea World and swim with the dolphins and Australia Zoo to feed the elephants. He was lucky enough to have both wishes granted, and we enjoyed a wonderful stress free holiday. Something that is sure to remain in our memories for ever.
As told to Nicole Salinas.
At the time this article is published, only weeks since being given the prognosis, the family has been given the worst possible news any parent could hear. They have been told James may only have days to live due to the rapid deterioration of his lungs. We are sending our thoughts and prayers to the family as they endure this difficult and heartbreaking time.
Help other families struggling with cancer by donating to these worthy charities.
We are now taking time to create as many beautiful memories as we can and make every day of our lives with James special.
Little Heroes Foundation - A SA based organisation that has been a lot of help for the family.
Childhood Cancer Australia - South Australia's key childhood cancer support organisation.
Leave a message for Gail and James on the Essential Baby forums.