Joseph Hammel
Joseph Hammel’s Story
“We will forever be grateful and never forget the exceptional care provided to our son Joseph by Children's Health Ireland at Crumlin. Our son’s recovery is down to the truly amazing talent and care provided by the multidisciplinary team in Crumlin, and we want to see this amazing work continue and benefit current and future sick children. I wanted to make a big impact with the fundraising and to do something over a long period. I started my fundraiser, running 10k a day for 365 days on July 1st 2020. It is tough but the support that I have received to date provides me with much needed confidence boosts to keep going.” Joe Hammel.
In June 2019, doctors discovered a large inflammatory tumour in Joseph. It was located between his heart and lung.
“In the days and weeks that followed we met the incredible multidisciplinary team in CHI at Crumlin. I remember the first time we met the oncology team led by Dr. Cormac Owens. Although they explained the seriousness of Joseph’s condition and the uncertainty we faced myself, Nicole and Joseph felt reassured by the multidisciplinary team, as they always had a plan for whatever scenario lay ahead. As our whole world was completely turned upside down, that reassurance gave us some peace and confidence that everything that could be done, would be done. As a parent, this is all you could have asked for in facing such uncertainty, a plan.”
In the 12 hours after admission to Children's Health Ireland at Crumlin, Joseph’s health rapidly deteriorated and Joseph needed two blood transfusions in the next 36 hours. He underwent surgery for a biopsy on the tumour within a number of days of admission. During surgery, this was the first opportunity for the multidisciplinary team to analyse the tumour.
It became apparent the tumour was inflammatory, and they deemed it prudent not to remove the tumour then, but rather attempt to shrink the tumour over time using medical treatment.
Joseph’s surgeon, Dr. Lars Nölke explained that it would be difficult to operate on the tumour at the current size; he was concerned about the risk to the left lung. The tumour size needed to be reduced before any future surgery. Subsequent results confirmed to the oncology team that the tumour was an Inflammatory Myofibroblastic Tumour (IMT). Traditional chemotherapy was not considered as a viable option to reduce the tumour. The team was familiar with a trial treatment that has shown effective results on reducing this type of tumour, particularly on patients having a specific gene.
Pathology confirmed that Joseph’s tumour did have this gene. As the drug was unlicensed, the medical team made an application to the drug company to acquire this treatment, which was eventually successful. Joseph was administered the treatment twice a day over 128 days.
During this phase, tests did show that the treatment was having a positive effect on reducing the tumour and after 128 days, the tumour reduced in size by approximately 30%, which was noted as a spectacular result by the oncology team.
Joseph now had to face the prospect of surgery to remove the tumour. In December 2019, Joseph underwent his second surgery to remove the tumour on his lung. We arrived in Crumlin not really knowing what was going to happen. The treatment had shrunk the tumour, but CT scans showed that the tumour had spread and attached itself to other parts of his body. There was no way to assess how everything was going to play out until the surgery.
Joseph was fully aware of everything and the fantastic multidisciplinary team kept him informed of everything throughout this journey. Joseph’s bravery was remarkable. He was so afraid of what was going to happen yet he had total peace that the team was going to fix everything.
Under the care of the exceptional heart surgeon, Lars Nolke, Joseph had approximately 70% of his left lung removed, his heart sac removed, part of his food pipe and diaphragm removed.
While the surgery and subsequent recovery in PICU was a horrendous ordeal for Joseph, the surgery was nothing short of a miracle. To undergo such invasive surgery in the cardio thoracic region and come out of it with no debilitating effects where he has a realistic chance to grow and live a relatively normal life is unbelievable, and testament to the skills of Lars and the team.
Unfortunately, the surgical team could not remove all the tumour tissue because it had stuck to parts in his upper body and they deemed it prudent to leave and monitor it over time. Joseph will undergo regular monitoring by the hospital until he is a young adult.
From the first day we arrived in CHI at Crumlin on 18th June 2019, through the months of chemo, surgeries and rehabilitation, we can never repay the hospital and staff for everything they did for us.
Even though it was an extremely difficult time, some moments stood out to the Hammels. The play specialist visited before Joseph’s surgery, “it was such a simple thing but it was amazing how much better Joseph felt afterwards and how much better I felt.” – Nicole, Joseph’s Mum.
Every member of staff that we met were amazing and so dedicated to their jobs. “I remember sitting alone in the corridor in the early hours of the morning, none of the catering facilities were open at that time, one of the cleaning staff saw me and without asking brought me a cup of coffee, it was so thoughtful and appreciated.”- Joe, Joseph’s Dad.
