Life after a Wilms' tumour

Three years ago, Dionne’s daughter, Emma, was diagnosed with a Wilms’ tumour, a rare form of kidney cancer. Here, Dionne tells their story.

"When Emma was four and a half, she had acute pain in her kidney. She was in such a state that I decided to take her to an out-of-hours clinic at Whittington Hospital. They thought her liver was enlarged and told us to see our GP the following day.

"From there, we were referred to a paediatric clinic at University College Hospital (UCH). Emma had several scans, and they discovered a mass on her right kidney.

"I was shocked, but at that time, I thought it was still just a growth. Although I had a feeling it might be cancer, it wasn’t until Emma was given an MRI scan that it was confirmed.

"My husband and I had prepared ourselves for the results, but it was still difficult to hear. It all happened in such a short space of time. Within two weeks, I’d gone from thinking she had a bladder infection to finding out it was a Wilms’ tumour.

Starting treatment

"Emma was referred to Great Ormond Street Hospital (GOSH) at the end of the week and began chemotherapy the following week. She was given a kidney biopsy so the doctors could learn more about the cancer and how it had spread, and was then fitted with a port (a tube through which drugs can be injected straight into the vein) to start a course of weekly chemotherapy. We were able to have some of the chemotherapy at our local hospital, the Whittington, but there were certain types of chemotherapy that they could only do at GOSH.

"It was a very emotional time, and I don’t think everything really hit me until a few weeks later. We’d booked a holiday for the following month, and I hadn’t thought about changing our plans. But every time Emma had chemotherapy, she seemed to get an infection or virus.

"Once, she was in the Whittington for a whole weekend. That was when I realised it wasn’t just going to be about going to the weekly appointments, but that we’d need to make other changes too.

"I have four children and it has had a big impact on family life, especially for my two older children. My son was six when Emma was diagnosed and he didn’t really know what was going on at the time, he just knew I wasn’t there. My daughter was older and having trouble with school friends; Emma’s diagnosis made things ten times worse.

"During the chemotherapy, Emma lost all her hair, and her leg muscles became weak so she couldn’t walk very well. She lost a lot of weight too. She struggled to eat during the day, maybe a biscuit at most, and I was told I needed to feed her through the night to give her the calories she needed.

Surgery to remove the kidney

"Eight weeks after starting chemotherapy, Emma had surgery to remove her kidney. The operation was meant to take two hours, but they discovered the tumour had spread further than they thought. It took four and a half hours in the end.

"Emma had had chemotherapy three days before the operation, so by the time she had surgery, she had absolutely no immune system and got another infection. Initially she was taken to a normal ward, but within 20 minutes, they realised she needed isolation and put her in a private room. Only my husband and I were allowed to visit.

"Seeing her wired up to all the machines after surgery was probably the worst stage of treatment. But, even though she was so ill, she was still very resilient. At one point, she actually pulled her tubes out. I was frightened that she’d hurt herself, but looking back, I knew she was still with us, she was just rebelling and that was her way of telling us that she didn’t want those tubes in her.

"By the time she was discharged, she’d lost about 3kg and came home with an naso-gastric tube (a thin, plastic tube which goes into the stomach via the nose) to get enough nutrition. She still needed another 26 weeks of chemotherapy.

"I’d read a lot of stories about children going to school during chemotherapy but, because of all the infections Emma had picked up, we decided, along with her consultant, that it wasn’t a good idea. At the time, I was heavily pregnant with (and then gave birth to) my second son, so I had to try and feed her during the day. I had the baby to cope with at night.

Ongoing support

"After Emma was diagnosed, we joined an organisation called Noah’s Ark. They offer support for parents of children with life-threatening and life-limiting conditions, and bereaved parents as well. I’ve found talking about everything has made it easier. I’ve grown to know a lot of other parents who have children with different conditions, and hope I’ve been able to give them advice too. It doesn’t matter that our children have different conditions, they’re all very sick.

"The word cancer means such different things to different people. I know a couple whose child has just been diagnosed. That’s a very hard stage, because it’s easy to think the worst. It can seem daunting and the treatment sounds very long, but it does come to an end. I think doing research is good, but it can also be negative too.

Looking ahead

"Emma’s recovered well, but she doesn’t like talking about what she’s been through. She’s settled into school, but has a little extra help in the form of speech therapy. She’s partially deaf in both ears, but we don’t know if that was to do with the chemotherapy or because of all the antibiotics she was given while on chemotherapy. It could even be completely unrelated, we just don’t know.

"We’re still at GOSH quite often for check-ups and X-rays, but are hoping that after five years, she’ll only need annual reviews.

"She doesn’t get ill very often, but occasionally says her legs hurt. I’ve read that children with a Wilms’ tumour can have leg pain after treatment, but Emma usually walks to school and back. She does everything a normal seven-year-old would do."