“I can’t take the pain from him. All I can do is support him”.
Kat tells us of her experience dealing with Teddy’s rare cancer and about the support the family has from Family Support Worker Jayne.
My son, Teddy, began to feel constantly unwell just after his third birthday. Back and forth to the GP every week with viral infections that he never seemed to recover from, Teddy started complaining of pain in his sides. Worried it could be a kidney infection or appendicitis, I took Teddy to A&E and we were sent home with antibiotics. Teddy stabilised for a few days, but the pain quickly returned. Back in A&E, doctors did an ultrasound which showed that Teddy had an 11cm mass on his kidneys.
Blood tests confirmed that it was cancer, and an MRI scan that it had spread all over his body. Teddy was diagnosed with the rare cancer, Neuroblastoma. We went from thinking he had appendicitis to finding out he had stage 4 cancer. It completely turned our world upside down. My heart broke in two. It was all very scary and stressful. We had a tiny baby, Rupert, and a very ill three-year old in hospital.
My husband, Alastair, and I then had to endure an agonising wait for Teddy to begin his treatment, whilst undergoing a list of endless scans, biopsies, blood tests and more.
It seemed to take forever, and he was becoming sicker and sicker, to the point of him lying in a darkened room all day crying or sleeping. Teddy was in hospital for six weeks for his first round of chemo. I was living away from home, near the hospital, so I could be with Teddy every day. We were not able to spend any time together as a family, and even when Teddy did come home in between treatment, with constant check-ups, scans and unplanned hospital admissions, we barely had a day together for four months.
It was completely relentless. There were awful, awful times.
We were in complete survival mode for around seven months after Teddy’s diagnosis. It was just about getting through each day. Our family life completely turned upside down. I missed Rupert’s first Christmas because I was in intensive care with Teddy. And Alastair missed Rupert’s first birthday because Teddy was having his second bone marrow transplant.
At the time we were relying on hospital transportation to and from appointments because we don’t drive and we couldn’t use public transport because Teddy’s immune system was too weak. Living an hour away from The Royal Marsden, where Teddy was receiving treatment, and 40 minutes from the local hospital, complicated our situation further.
Using hospital transport made things more difficult. It was a lot of work to book it and they would often be late collecting us or be so early that we would have to wait hours in hospital prior to our appointment. In fact, we have had to wait for collection up to four hours after our appointment, to the point where the unit Teddy was on had closed before we hade been picked up: all the nurses went home, and we were just left wandering around this empty unit waiting for transport to come and get us with a child who had just woken up from a general anaesthetic, who was weak, tired and just wanted to go home.
Our community nurse referred us to Rainbow Trust. I remember feeling like other people must need this more than us. Then we thought ‘if we don’t need help then who does?’ Family Support Worker Jayne has been supporting us since January 2023, mainly with transport to and from hospital appointments.
The first time Jayne came to take us to a scan I felt a huge weight lifted off. I hadn’t really realised how much extra stress the travel had added to our lives. Teddy had radiotherapy recently and we stayed near the hospital. If we had still been using hospital transport, we couldn’t have brought four weeks’ worth of luggage. Jayne came to our house at 6am in the morning, helped us load up the car, she dropped us at the hospital, she collected the keys to the flat for us, she collected a supermarket shop for us, she came back and helped us unpack and make the beds. It’s all help that you don’t get from transport.
Alastair and I currently take it in turns to be at the hospital when Teddy is an in-patient and Jayne’s transport support saves us train ticket fares and an immense amount of time. Jayne would drop Alastair off, we can then spend four or five hours together with Teddy, and a Rainbow Trust volunteer driver would take Alastair back home.
But is not just the time and money saving. We can actually rely on Jayne. We trust her. And I benefit from emotional support from her too. Jayne is always on time and Teddy loves her because when Jayne comes, she doesn’t take bloods, nor do any medical tests, she’s there just to see Teddy, and Rupert loves her too.
Teddy’s treatment has been harsh for all of us. We have our heads down and wake up in the morning not quite knowing how to get the strength to get up and face the day and knowing that we can count on Jayne really helps.
