A loving legacy for Frank

Two-year-old Frank sadly passed away in May 2019 from a rare form of cancer. Here his mum, Maris, shares her story about her son’s time at Great Ormond Street Hospital (GOSH) and the legacy she’s building for him.“Frank was born in January 2017, weighing a strong 9lbs. He was hardly ever ill but, just before he turned two, he came down with a cold as we were getting ready to go on holiday.

“Frank was well enough to fly, but things escalated on the plane. Frank started breathing heavily and I could feel his heart rate was very high. When we landed, we went straight to hospital for blood tests. Within 24 hours, we were told our son had T-cell acute lymphoblastic leukaemia (T-ALL).

“It was a shock. I felt like my legs were taken out from under me, our world turned upside down, but I knew I had to stay strong for my son.”

“As soon as we were told Frank was so unwell, our priority was getting back home so he could start treatment. On landing, we were rushed to GOSH.

“Two days after Frank’s birthday, he had his first dose of chemotherapy at GOSH. Because the type of leukaemia he had was so rare and aggressive, the available drugs were designed to fight more common types of cancer. If he responded well, then great, but the chance it’d be effective was slim from the start. We could only hope for the best.”

“After four weeks, Frank wasn’t responding to treatment. We were in and out of hospital for months. My husband and I hoped Frank didn’t have the nasty type of the disease, but we also knew we had to prepare ourselves.

“Even when the leukaemia spread to Frank’s brain, we still hoped for a miracle. But there comes a point when you can no longer treat a child if it means they’ll have no quality of life. It’s the most difficult thing in the world to let go, but you also don’t want them to suffer.

“Towards the end, we were waiting for Frank to go. We didn’t want to see him suffer anymore. Time stopped for us. Every moment with Frank was precious. We talked to him, played his favourite cartoons and calming music, and just breathed with him together. We tried to memorise everything we did with him during his short but very happy life and stay strong for him until the end.”

“GOSH means a lot to us. No matter how bad things got, GOSH staff always gave us hope. It’s incredibly important that staff around you offer personal support, know your story and make you feel as comfortable as possible.

“GOSH nursing staff go through a lot, it’s admirable how they maintain their cool while being there for us emotionally. I often talked to the nurses, particularly when we knew our son would pass away. They’re incredible souls giving their all to support families, offering to make tea or providing their shoulder to lean on when it was unbearably tough.

“The Play specialists, volunteers, the physiotherapy team, it all adds a little buzz and relieves the loneliness. Without these services and support, many parents wouldn’t be able to be as strong for their children.

“While we were at GOSH, I couldn’t imagine leaving Frank’s side. It was great I could stay with him 24/7. I also know GOSH Charity offers accommodation to families too. All of these support services are available because of funds from the charity, and it means the world to us to have them.”

“We call Frank our little monkey. He was born just at the end of the Year of the Monkey and his favourite teddy was a monkey. He was inquisitive, smart, and a very energetic and bubbly boy. He was known and is remembered as always being smiley. Even on bad days, if he could, Frank would smile. He’s our hero.

“Frank was our only child and from being the happiest and caring parents, we now have to navigate the unexpected world of grief. In memory of our most precious treasure I want to do something for Frank and build a legacy for him. I’m interested in understanding the type of cancer he had better and to be there to help others who may be in an unfortunate situation in the future.

“It’s difficult to get funding for rare cancers because there are so few cases. The last patient to have Frank’s specific type of T-ALL at GOSH was five years ago – that’s how rare it is.

“I set up a fundraising page a year from when he was diagnosed (a day before his second birthday) to kickstart our fundraising and raise awareness. I’ve also established charity fundraising in our workplace, and I’m pleased that for 2020 (and hopefully beyond) this will be in support of GOSH Charity. Everybody has the power to fundraise in our society, every little bit helps.”

“Since lockdown, I have immersed myself in the world of art, and the inspiration is coming from Frank.

“As a grieving parent, this is my medicine, and this is my way of helping my son in a way – by helping others through the money I raise.”

You can view and find out more about Maris’s artwork here.

Click here to visit her JustGiving page, in memory of her son Frank for GOSH Charity.