The Galileos Family Journey, by Helen Galileos

We celebrated our son Daniel’s 18th birthday in April 2008 and I can remember thinking ‘how lucky am I’. I had a loving husband, a daughter who was studying Year 11 and planning on pursuing a career in medicine, and a son Daniel who was studying Year 12 at Parade College.

Daniel had been experiencing back pain on and off for approximately four months, in which time he sought treatment with a physiotherapist. Honestly, we did not think too much of it as Daniel was a footballer and had been playing since the age of nine.
He was very committed to his football and would often put his body on the line, however was finding it difficult to complete a training session, let alone play in a match.

Daniel’s pain became unbearable in July 2008 so we took him to Epworth Hospital where the first doctor told us to ‘not waste her time and go to see our local doctor’. Luckily I listened to my gut and had Daniel seen by another doctor who recommended he have a MRI.

Little did we know that this was to be the beginning of a month of every test and scan imaginable. All we wanted was the answers to why Daniel was in so much pain. Each doctor would do more and more tests which became quite frustrating as we would inturn be referred on to a new doctor each time.

Finally, we were referred on to Professor Peter Choong. I did not know it at the time; however he is the best in his field and heads up the surgical unit (bone cancer) at Peter Mac Cancer Institute and St Vincent’s Hospital.

I can remember walking into his office thinking that this man should be able to help us find out why Daniel had such pain that would not go away. Professor Choong looked at all of Daniel’s scans and tests and of course ordered more. He then said that Daniel would need a bone biopsy as this would be the best way to determine what we were dealing with.

I asked Professor Choong what he thought Daniel had and he recommended we wait for the test results before talking about what we were dealing with. I was concerned as I had googled him and it came up with ‘Tumour Specialist’.

Daniel had his biopsy on a Thursday and we were due to see the professor the following Thursday however received a phone call from his rooms asking us to come in on the Monday. I knew in my heart that this was not good but wanted to stay positive.

During this long month we had not confided in too many people as we did not want to worry anyone unnecessarily. There is nothing worse than telling people that you think your child might be seriously ill without knowing what they have. Daniel’s best friend Matthew and his parents have been with us from day one and continue to support us.

Having to tell our parents was one of the hardest things we had to do – especially as they had no idea that Daniel was unwell. My parents had helped us raise Daniel when he was little and had babysat him on many occasions. They were extremely close to him. I knew they would all be heart broken but we had to try and explain to them that we needed their support for Daniel to beat this disease.

It took one long month for Daniel to be diagnosed. I was still getting used to him having his drivers licence when in August 2008 he was diagnosed with Ewing Sarcoma in the right iliac crest (a rare and aggressive bone cancer).

You always hear of it happening to someone else, but never in your wildest dreams do you think it is going to happen to you. Cancer…. what do you mean our son has cancer? What type of cancer? How do we get rid off it? What do we have to do? Cut it out please! Please get rid off it! Words cannot describe how I felt except to say that I was numb…. how could this be happening to our son? He was only 18 years old!!

Daniel was diagnosed on a Monday and two days later on the Wednesday we were driving to Peter Mac Cancer Institute to meet our oncologist. As Daniel was 18 he was too old for the Children’s hospital. I will never forget the feeling in my stomach when we drove into the hospital. As we walked in I still could not understand why we were there – was my mind playing tricks on me? This was going to be our world for the next two years.

Our first meeting with our oncologist seemed so surreal as she did not waste anytime in giving us the details about what Daniel was about to endure. She also did not beat around the bush and was very blunt. At the time I thought she was being harsh but in hindsight it helped us understand what we needed to do to support Daniel during his battle with cancer.

The plan for Daniel’s treatment had been decided – 14 rounds of aggressive chemotherapy and surgery to remove the tumour. A port was to be surgically inserted into Daniel’s chest, under his skin above the rib cage. This was the best way for the chemotherapy to be given due to the type of regime that was required. The port was going to be inserted on the Friday and the chemotherapy was going to begin on the same day. How quickly our life had changed.

We were completely overwhelmed with all of the information that was being provided to us by our ‘new family’ (support network) of oncologists, nurses, Professor Choong, social workers and many more. Over time we learnt how to be a nurse/doctor and so many times I wished that we did not have to know any of this information. However, in order for Daniel to beat the disease we needed to know as much as anyone.

Daniel coped with the chemotherapy amazingly well, however watching him have this poison being pumped into him was very hard. Daniel’s chemotherapy protocol was five days of chemo with a three week break then two days of chemo with a three week break. The first nine rounds of chemo were pretty straight forward and Daniel didn’t have many side affects other than hair loss (everywhere). He was very fortunate as he had very little nausea and would often be seen eating while having treatment.

As Daniel was in his final year of school it was decided that after his ninth round he would be allowed to attend schoolies. This was a chance for him to be with his mates and feel normal. Even though we were concerned we were also pleased that with the oncologist’s support he was well enough to be able to attend. Daniel’s friends were very supportive during his treatment and without them he would not have coped as well as he did.

Daniel’s Year 12 graduation was something that was important to us all as he had worked so hard to complete his final year. Against doctor’s advice (he had a temperature of 39+), he attended. This was the best medicine and by the time we took him back to hospital his temperature had dropped to 37.5. Seeing Daniel amongst his peers getting ready to accept his certificate was also medicine for us.

In January 2009, Daniel was due to have his surgery – a hemipelvectomy, to remove the tumour from the right iliac crest. The operation would mean that a major part of his right pelvis would be removed. The operation was extremely risky and was scheduled to take over ten hours. I will never forget the day of his operation, we were all terrified but hopeful. Nothing could prepare us for what we were about to see and endure no matter how many times it was explained to us. Seeing Daniel being taken away for surgery was terrifying as I could not help but think the worst.

Daniel was like a rock and knew what was in front of him. We knew that we would have a long wait as Professor Choong had said all was going well if we didn’t see me after six hours.

Daniel went in for surgery at 8am that morning and we did not see Professor Choong until 7.30pm. He had great news – all of the tumour was removed and the chemotherapy had done its job. There were no signs of any living cells. The only down side was that he had to remove more of the pelvis than he had planned.

My husband Peter, daughter Stephanie and I were extremely relieved, however we knew that Daniel was not out of the woods and the next forty eight hours were crucial. Daniel spent nearly one month in hospital after his surgery at St Vincent’s Private hospital and we will be forever grateful for all of their care, support and understanding.

For the next five months Daniel had to wear a brace that would support his pelvic area and support his entire body. He was very lucky as he was able to take the brace on and off. He also went through various types of crutches that assisted him with his walking. Seeing Daniel commence physiotherapy and finally walk (with a slight limp) without crutches was amazing. I honestly thought this day would never come.

Daniel had further chemotherapy treatment after his surgery to ensure that if any cells had spread they would be killed. This was the toughest part of his treatment as he was very unwell for the next seven months. His positive attitude and support from all our family and friends ensured that he got through and was able to focus on his future.

The last two years have been extremely difficult, however as a family we have battled this disease and continue to do so. Daniel is on three monthly check ups and so far all is good – no sign of the cancer returning. We still take each day as it comes but we are also very hopeful and plan for the future.

We are very grateful to all of our family and friends for being there for us on many occasions with their love, support and understanding. It has helped us get to where we are today in this journey.

This whole experience has changed my whole outlook on life. I no longer sweat on the small stuff. Honestly, it’s not worth it.

Today Daniel is overseas with his sister Stephanie. They are on a four month holiday going through Europe.

Challenge

Prior to Daniel’s diagnosis we had never heard of Challenge and were really unsure how they would be able to support us. How wrong were we as they have been amazing. Daniel has been given many opportunities that he is very grateful for. He’s met Robert Allenby and played on Capital Golf Course –something he has not stopped talking about. He was also fortunate enough to meet Kylie Minogue with other Challenge kids and was stoked to be the only male. Daniel also attended the AAMI tennis classic with our family friend Christian Rapassanis and was given the opportunity to meet Swiss tennis player Stanislas Wawrinka.

Challenge has not only been there for Daniel but also for us. The Mum’s Retreat and different activities for dads are really appreciated. I have met many mums along the way and it is wonderful to be able to talk to someone who really knows what you are going through. I now call some of these mums my closest friends. Thank you Challenge.

My family and I have tried to attend as many events as possible to support this wonderful charity. Rattling tins might not sound very exciting but every cent helps. It’s very rewarding to be able to give something back to Challenge as we know how hard they work.

Thank you just does not seem enough when talking about Challenge – they have made a world of difference to our family. It is because of this that the Galileos Family will continue to support Challenge.

To find out more information visit the Challenge website.

Guest Blog Article, by Helen Galileos