Ryan James Dobbie 13 April 2009 – 3 November 2010 Born: Cairns Base Hospital, Queensland, Australia Nevus Type: Bathing Trunk Nevus Primary Complication: Malignant Melanoma Treatment: None Ryan's Journey: It was Easter Monday when I went into labour with Ryan, he was in hurry to enter this world as the whole labour only lasted four hours. When Ryan was placed on my chest, I noticed some spots on his face and I asked the midwife if he had a mole on his face. Little did I realise, he also had it all over his back, stomach, genitals, legs and there were lots of other tiny little moles around his body. The nurse advised they had called for the doctor to come and see Ryan. We were told that they had sent photo's of Ryan to Townsville where they advised they thought Ryan's condition was CMN (congenital melanocytic nevus) and that is was very rare. They also advised that due to the nevus being on his spine and the base of his neck he would require a MRI to see if there were any neurological problems and because he was a baby they would have to fly him to Townsville so they could sedate him. Luckily, the private hospital had an MRI machine and they decided to try and do it there first. My mother went with the nurse to the private hospital as I was still recovering from surgery to remove my placenta. When mum and Ryan came back, I was told he was a perfect baby and just laid there and did not move and they were able to carry out the MRI. The results came back the next day with the all clear and that he was fine in the brain and spine, but we still had to see the paediatrician as we still were not fully aware of Ryan's condition. We were allowed home after 6 days in hospital, but had several appointments made with his dermatologist Leith Banney and were waiting on a consult with the eye specialist and were also awaiting for a time and date to take Ryan to the Royal Children's Hospital in Brisbane to see what could be done for our beautiful little man. Ryan was 9 weeks old when we made our fist trip to Brisbane and we saw a couple of specialists and one of them had said that they had seen cases like Ryan's before, however, his was the worst he had seen. That did not make me feel very good and I burst into tears. We met Professor Kimble who examined Ryan and said that he would need to consult his peers from Australia and overseas. We then went home to Cairns and Ryan had a cold which developed into RSV and he spent 7 days in hospital. Professor Roy Kimble later contacted us and advised that as Ryan has extra skin around his body, he would do some serial excisions and also see how well his skin healed, so Ryan's first operation was booked in for when he was four months old. Surgeries: Ryan's first surgery was carried out with no issues apart from not being able to find a vein to put anaesthetic. I counted 17 needles holes, luckily Ryan was sedated and did not feel any of those. Ryan was off heavy pain medication straight away and did not appear to show too much discomfort and his wound healed really well. Professor Kimble ensured that all the anaesthetists were careful for any future surgeries. He also took some of Ryan's skin and had planned to try and grow it in the lab. Ryan had four more surgeries after that one and we only had one wound that de hissed and had to fly back to Brisbane for it to be re-stitched. Whilst this was being done, we were advised that the biopsy from the surgery came back with one of the removed areas being postive with a melanotic schwannoma and that it was very rare and not found in children. Professor Kimble said that the biopsy had just cleared the safe margins but wanted to ensure all of it was removed, so this was done with the wound that split open. In February 2010, an MRI was carried out and we were advised that Ryan had the all clear from this tumour and we felt so relieved. Ryan had another surgery after this where he had lumps removed from his anus and was given a new little bottom as the lumps bled and would have caused if problems in the future. Only a couple of hours after his release from this surgery, he developed diarrhoea and I was so worried he would get an infection and he was re-admitted to hospital for a further week. We were very vigilant with cleaning every time he soiled himself and kept the area clean with vasolene. He had the diarrhoea for 3 weeks and did not get one infection and the would healed well. Diagnosis: Six months after his MRI, Ryan was happily playing outside and fell over and cried a little bit. He then got up and continued playing, he had a slight limp but wasn't complaining. The next morning he appeared to still have a limp, so my mother took Ryan to the doctors surgery just to make sure he was ok. Dr Michael didn't think there was anything untoward, but because Ryan had such a high pain threshold, it was decided that we would get an x-ray. This was carried out the same day and results sent to Dr Michael. I received a telephone call to say that I needed to go the surgery to discuss the results. I immediately knew there was something wrong. Dr Michael asked if there was any previous injuries and I advised no and that he would have been aware of them if there was. As I had a paediatrician appointment for two days time, I asked Dr Michael to refer the report to Dr Elena Mantz and I took the film in with me. When Elena examined Ryan, she didn't notice a limp when he walked, however she could see it when he ran. The ortho surgeon was paged and was not available, so Elena said she would refer the report to the ortho and get back to me. The next day whilst I was taking my daughter to school, I received a phone call from the hospital advising they had booked an MRI at Brisbane for Monday and I would have to fly down on Sunday. I said no as Ryan was booked in for surgery on the Wednesday and they could do it then or on the Tuesday when we were due to arrive. Not long after I received a phone call from Dr Elena Mantz advising that it was important and that we should really go, so I agreed. I then got a phone call from the oncology social worker who was booking my flight and accommodation. As soon as I heard oncology social worker, I knew immediately that cancer was suspected, however at worst I thought Ryan may loose his leg. Monday came and Ryan had his MRI, the hospital was only going to do his sore leg and I asked why weren't they doing all of it. They said they may do all, but weren't sure. The MRI took hours. Ryan came out of it fine. It was only hours later and I was called into the Oncologists room and I knew then the results were not good and asked Peter Wilson to get my mum to sit in on the results. He asked me what I thought he was going to say. I said it is cancer isn't it. Peter confirmed this, but said it was really bad and was melanoma that has already spread through Ryan's bones and liver and that there was no treatment available and that he didn't have long. He also said Ryan's leg was actually broken as the tumour was quite big in his leg and were amazed that he was still walking on it. Peter advised the cancer was aggressive and had only been in his body for about six weeks. My world was just shattered, I broke down and cried. I then had to ring my husband and tell him the news. He and my daughter were on the next available plane the following day to be with us. Ryan's last weeks: The palliative care team were wonderful, they provided us with loads of support, information, medication and family day trips. We went out and bought a video camera and spent some quality family time together and trying to be happy for our beautiful boy. We went to Sea World, Australia Zoo and he loved every minute. When we went home to Cairns, we had a party for Ryan and had a merry go round, zoo to you, jumping castle, face painting, balloons, food and all of it was donated by our friends and wonderful people from around Cairns. We got some wonderful photographs from dear friends and Ryan had a ball. Ryan was very brave and never complained. He still walked with a removable caste, but couldn't in the end and I would have to carry him or put him in his pram. He kept his sense of humour, even when his little belly swelled with the tumour and his body got hot with temperatures. You could see he didn't understand why he wasn't able to do some things any more and I couldn't tell if he was in too much pain, this is something I will always wonder about. We were told of what would happen to Ryan like going jaundiced, sleeping more and loosing his appetite. Ryan did none of these things except he couldn't walk, got uncomfortable and I would have to pick him up and then put him down. He developed lumps in his skull and were painful to touch as he would push my hands away from him. Ryan passed away at home 11 weeks after his diagnosis and we were shocked at how quick this cancer took hold of our little boy. We were absolutely devastated and still are today. Ryan was an energetic, mischievous and funny little boy. He was brave and never complained about anything. He loved being outside and taking his sister to school He would yell at people if they walked passed him without them saying hello to him. Ryan changed our answering machine messages and locked us out of our mobile phone. Ryan always had a smile on his face and his beautiful blue eyes sparkled.

By Lyn Dobbie (Ryan’s Mum) Published 2013

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