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What Aidan taught me and John Hopkins

Physicians pay courtesy call on Minister of Health Dr. Duane Sands prior to a tour of Princess Margaret Hospital. Pictured left to right are: Colonel Dr. John Black, Consultant in Emergency Medicine & Pre-Hospital Trauma care, Oxford University/ British Army; Dr. Heather Symons, Clinical Director, Paediatric Blood and Marrow Transplant & Assistant Professor of Oncology; Dr Patrick Brown, Director of the Sidney Kimmel Cancer Centre Paediatric Leukemia Program, Associate Professor of Oncology & Assistant Professor of Paediatrics The Johns Hopkins Children’s Hospital and Dr. Maggie Fader, Haematology/ Oncologist, Miami Children’s Hospital.

Physicians pay courtesy call on Minister of Health Dr. Duane Sands prior to a tour of Princess Margaret Hospital. Pictured left to right are: Colonel Dr. John Black, Consultant in Emergency Medicine & Pre-Hospital Trauma care, Oxford University/ British Army; Dr. Heather Symons, Clinical Director, Paediatric Blood and Marrow Transplant & Assistant Professor of Oncology; Dr Patrick Brown, Director of the Sidney Kimmel Cancer Centre Paediatric Leukemia Program, Associate Professor of Oncology & Assistant Professor of Paediatrics The Johns Hopkins Children’s Hospital and Dr. Maggie Fader, Haematology/ Oncologist, Miami Children’s Hospital.

Hundreds gathered in St Anslem’s Catholic Church on Friday for the funeral of two-year-old cancer victim Aidan Carron.

Deputy Prime Minister Peter Turnquest was among the many mourners who assembled to hear tributes and prayers for the toddler who, on Christmas Eve, tragically lost his life to therapy-related leukaemia brought on by the treatment necessary to eradicate the deadly auto-immune disease he acquired from his vaccinations.

Aidan’s father, Robert, and other close family members spoke movingly of the little boy who they said lit up every room and who put of a heroic battle to overcome a disease which had been so unnecessarily inflicted on him.

Mourners flew in from around the world including members of Aidan’s medical team at the John Hopkins Children’s Hospital in Baltimor. They included Dr Heather Symons, Clinical Director, Paediatric Blood and Marrow Transplant and Asst Professor of Oncology; Dr Patrick Brown, Director of the Sidney Kimmel Cancer Centre Paediatric Leukemia Programme, Associate Professor of Oncology/Associate Professor of Paediatrics; Miami Children’s Hospital, Dr Maggie Fader, Haematology/Oncologist and close family friend Col Dr John Black Consultant in Emergency Medicine, Oxford University Hospitals and Consultant to the British Army in pre-hospital trauma care.

Earlier in the day, the group paid a courtesy call on Health Minister Dr Duane Sands and toured Prince Margaret Hospital.

Dr Patrick Brown, a renowned cancer researcher, wrote an incredible tribute to Aidan, grandson of The Tribune’s publisher, Eileen Carron.

Dr Brown’s tribute read: “On the day that Aidan died, his grandmother asked me if I could write down some of my thoughts about Aidan’s short life. I agreed without hesitation. The first thought that came to mind was that Aidan had taught me so much about so many things over the several months I had known him. This is how I will remember Aidan – as a beautiful soul who physically spent only a very short time on Earth but left behind more lessons than are taught in a lifetime by even the most learned teachers.

“I am a physician, so I will start with what Aidan taught me about medicine. Aidan’s medical journey began when he was diagnosed with a potentially deadly disease called hemophagocytic lymphohistiocytosis (HLH) shortly after receiving his six-month old vaccinations. HLH happens when someone is exposed to something that stimulates their immune system, usually an infection with a virus or bacteria. Normal immune responses turn themselves off after the infection is cleared, but in HLH, this doesn’t happen – the immune system stays on, and starts to cause serious damage to the patient’s own body. If the immune switch isn’t turned off, the patient will die from severe damage to the liver, heart, kidneys and other organs. 

“The first lesson Aidan taught me was that our understanding of HLH is incomplete. When HLH happens in very young babies, like Aidan, the explanation is nearly always a genetic mutation in the patient’s immune cells that prevents them from turning off. The infection isn’t the problem – it’s the patient’s immune system. It was a shock, then, when Aidan’s mutation testing came back negative. He did NOT have an HLH mutation. What we learned was that sometimes a stimulus to the immune system is so strong that even a normal immune system develops HLH. In Aidan’s case, this stimulus was one or more of the vaccines he received when he was six months old in the Bahamas. He was not the only child who developed HLH after vaccinations in that area around the same time. Aidan taught us that HLH in young patients is not necessarily a genetic disease – an important lesson that I will never forget.

 “The treatment of HLH is difficult, to say the least. The only way we in the medical field know to turn off the immune switch that HLH activates is with very strong chemotherapy drugs. One of these drugs, called etoposide, is very effective in curing HLH, and thankfully it was in Aidan’s case. Unfortunately, etoposide has a very small risk of actually causing a deadly form of blood cancer called treatment-related acute myeloid leukemia (t-AML). Aidan was one of those rare patients that developed t-AML. Despite heroic efforts by Aidan, Aidan’s parents and Aidan’s doctors both in Miami and at Johns Hopkins in Baltimore, Aidan’s leukemia could not be cured. It continued to come back after every treatment. No stone was left unturned. Ultimately, the leukemia claimed Aidan’s physical body. Aidan’s spirit, on the other hand, was left completely intact. If anything, it became stronger as his body weakened.

“This is the second lesson that Aidan taught me – while the human body can, and always does, succumb to disease, trauma or aging, the human spirit cannot be defeated.

“I first saw Aidan in a video his parents Robert and Lizzie sent me just before making the trip to Baltimore. Aidan, bald from chemotherapy, was dancing, singing, and laughing in his hospital room in Miami, charming his nurses and doctors who looked on with amazement. It was immediately obvious that this was a special little boy. Meeting him in person just reinforced that Aidan was a joyous spirit.

“What I did not know then, but came to know with time, was that this special little boy’s joyous spirit simply refused to be dampened by circumstances that for most of us would have been overwhelmingly disheartening. His strength helped me deal with my disappointment that we could not cure his leukemia. Think about that for a moment – HE, a baby fighting for his life with every fiber of his being, helped ME, a grown man that was supposed to be the one doing the helping. I will never forget that.

“The third, and most important, lesson Aidan’s case taught me was not medical, but personal. And this lesson came not only from Aidan, but from his parents. And that lesson is that the power of LOVE is without limits. Robert and Lizzie’s love for Aidan was so profound that it empowered them to perform truly superhuman feats of grace and selflessness. 

“No matter how bad the news I was forced to deliver regarding the latest setback in our effort to cure Aidan’s leukemia, Robert and Lizzie would somehow find the strength to see through their pain and consider how Aidan’s case could help others. I cannot overemphasize how amazed I was by this. They were losing their son – or at least his physical body – but their love for him was so strong that it compelled them to find a way to honour his life by helping others.

“Ultimately, their unshakeable love for Aidan gave them the strength to provide Aidan with the dignified death that his dignified life deserved. Aidan’s body died on Christmas Eve. He died in his own bed, surrounded by the people and things he loved most. His spirit left his body, more joyous and stronger than ever, ready to inspire Robert and Lizzie to create a fitting legacy. And ready to inspire every single member of the medical team that was fortunate enough to know him to take the lessons they learned and make the world a better place. I, for one, will never forget the lessons Aidan taught me. For that, I will be forever grateful.” 

After the funeral, Aidan’s remains were buried at St Matthew’s Church on Shirley Street as mourners sang together, ‘All things bright and beautiful...’

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