When you’re told the most unimaginable news, how do you go on with your life as normal? At Chesterton House we have had a long standing relationship with a local business in Loughborough for many years. Last year Michael, took over the business on the retirement of the remaining family owners, and he expected to put in the hard work that goes with running a successful company. What he hadn’t prepared for was the news that his 15-month-old son had developed Cancer.
Annabel went to speak to Michael and he told her how the deadly illness had changed his family’s world, and what he wants to do to support those who encounter humanity’s most common killer.
“It was a chance occurrence that it was spotted so quickly,” Michael, 35, tells me. Leaning forward in his office chair, his eyes gloss over as he recalls the events that led up to his son’s diagnosis, and the year-long battle to recovery.
Michael lives in Loughborough, with his wife Sarah, and their two children; Toby, 8 and Jacob, 2. Last July, just before they went on their yearly holiday to the Isle of Wight, they took Jacob to the opticians after noticing he was squinting an abnormal amount.
“They told us he had a problem with his eye, which is something that we’re used to because his brother, Toby, wears glasses.”
After arranging a follow up appointment, they saw an optometrist in September who discovered that Jacob had a fleck of white towards the back of one eye and encouraged them to get it examined by a doctor.
“She didn’t say anything, other than it needs to be checked out, but you could see from her face that something wasn’t quite right.”
What started as a simple optician’s appointment soon unravelled into something sinister as the family went to A&E in Leicester twice in the following week, where Jacob was finally diagnosed.
“They put Jacob under anaesthetic so they could study him. Hours later they came back to us and confirmed that he has Retinoblastoma.
“I asked them what it was and they told me, it’s cancer.”
A rare form of eye cancer, Retinoblastoma usually affects children under the age of five. It can be passed on genetically, or occur in freak instances, and to this end, the direct cause of the illness is unknown. With a 95-98% survival rate, children commonly beat the disease, but the treatment can be a long and complicated battle.(1)
“They say if you could choose a type of cancer, then it would be this one, because the survival rate it so high. I did a lot of research online; you don’t understand the jargon from doctors a lot of the time, but mainly because I was thinking, why us? Why has this happened to us?”
Just two weeks after diagnosis, a treatment plan was in place and Jacob started chemotherapy via a hickman line into the side of his chest, followed by regular visits to see specialists in Birmingham for cryotherapy and laser eye treatment. These were the bricks paving the way to his recovery.
“Managing his illness slowly became routine and our lives adjusted. We knew he would be poorly after chemo and it took us a while to work out how to deliver the anti-sickness meds as he was always nauseous.
“He never let it affect him though. This was his normal life and he continued to be the same adventurous boy he always had been.”
Months into chemotherapy, Jacob grew more visibly ill. His hair started to recede, he slept a lot and would get high temperatures. It’s common to acquire an infection due to the hickman line, which meant that Jacob was regularly admitted to hospital.
“The hospital trips were the most stressful. It was a risk to Jacobs health to be around so many sick people. At one point, we were in and out of the Leicester infirmary. Every round of chemo, every four-week cycle, he would end up with a high temperature and land back there. It was really hard.
“There was an occasion where I had to explain to Toby that his mother wasn’t there in the morning because she had been at the hospital all night with Jacob.”
The worst part though, Michael confessed, was seeing the emotional impact it had on each member of his family.
Michael, having just taken over a business, struggled to balance work and home life, sometimes having to work from hospital.
“It’s been difficult for me to balance the two, I’m in charge at work and my team needs me, but I wanted to be there for every hospital appointment for my family. I’ve been so lucky because my team have been so supportive and understanding. A lot of my clients are long-standing, so because I wasn’t always there at the office, I would be honest and explain what was happening.”
This was just one of the many sacrifices the family made. Due to chemotherapy, Jacobs immune system was severely depleted, meaning that for eight months, his family shut themselves away in their home.
“We didn’t go out and live our lives and no one came in. That’s where it was hard for Toby, he couldn’t have any friends round and have a normal life. Sarah stayed inside with Jacob and our family were the only people that saw us regularly. We took that decision to make him as safe as possible.
“We cancelled our holiday, and for Christmas, Jacob and I stayed in so everyone else could go to our traditional Burleigh court dinner. It was incredibly difficult, on all of us, more so for everyone around Jacob because we knew what was going on.”
The shining light in the darkness though, was how the family pulled together.
Grandparents continuously looked after Toby, Michael worked whilst balancing hospital appointments and Sarah dedicated all her time to caring for Jacob.
“Balancing work got easier over time and the family has been so supportive. One of the nicer moments, was when we sat down and first told Toby. He immediately asked for Lego, and wouldn’t tell us why. Eventually he explained to us that he was going to build a ‘cancer-killer,’ to cure his brother.
“Every so often, even now, Toby would run up to Jacob and ‘squirt’ the gun in his eye to cure him.”
Alongside his family, his work and the NHS, the family were supported by Macmillan Cancer Support. Every week the charity would come to collect Jacobs blood for testing, and deliver the results.
“Sarah couldn’t go to the hospital every week and their support meant we knew whether Jacob’s blood count was healthy enough for chemo. They were there for us on a personal level too. They would check up on us and ask how we were doing as a family, and that made a huge difference.”
Michael wanted to give back to the people that supported him and his family.
When April rolled around, Jacob had his last chemo treatment and it was in June that the hickman line was taken out.
Not long after Michael decided to fundraise for Macmillan and Cancer Research by hosting a 60-mile bike ride on the Isle of Wight.
The bike ride will kick off on the 23rd of September, almost a year after Jacob was diagnosed to commemorate his recovery. Michael’s family are all taking part, with Toby joining in on the last few miles.
“Completing the bike ride on the Isle of Wight means so much to us as we’ve had so many family holidays there. We love cycling and we’re supporting a great cause, so I’m really excited about it. It’s definitely going to be a challenge though, we know the area and there’s some interesting hills!”
The family have been training twice a week and have set up a fundraising page, which has already amounted to an impressive £1668.
“The biggest reason we’re doing it is because of Jacob, but there are friends and family of ours who have also had cancer and unfortunately lost their battle. There are people we know who have had intensive treatment.
“You just think, there are people out there that rely on the charities. It would just be nice to try and do something to support them.”
Jacob has now been declared to be in grade one remission but will have regular check-ups on his retained tumour until the age of sixteen.
If you would like to find out more about Jacob’s story or to donate to their cause, follow the link to their everydayhero fundraising page.