Niamh’s symptoms were very mild so her cancer was diagnosed quite late. Wilms’ tumours are usually discovered between the ages of three and five and Niamh was six years old.
She used to complain about tummy aches and feeling sick, but she never actually vomited. She didn’t look particularly bloated, perhaps a little heavier than other girls when she was wearing her ballet outfit, but nothing unusual. The symptoms were so subtle.
One Friday, she came out of school, and told me that her tummy was hurting. I took her to the GP straight away as we were able to get an appointment. The GP found the mass immediately and suspected it was in her spleen. We went to hospital that very afternoon and the wheels were set in motion.
At the hospital, further checks were carried out and there was a very large tumour coming from her kidneys. It was so large that it was pushing her heart, spleen and abdomen. Niamh’s tumour had spread to her lungs and we were told that that she had stage 4 disease. They wouldn’t be able to stage the tumour until it was removed. This would happen after she had completed two months of chemotherapy.
I understand now that the medical team were following protocol from a 10-year research study, and thankfully, Niamh is benefiting from this important research. But at the time, I felt like I wasn’t getting answers to my questions.
She was given odds of 60-70% survival right at the beginning of her treatment, but the only statistic that matters is your own child.
Treatment and side-effects
Niamh doesn’t need to go through radiotherapy as the metastasis in the lungs had responded well to the initial chemotherapy, but she did need two months of chemotherapy before surgery.
The tumour and her left kidney were removed. She responded very well to the chemo and the tumour came out whole during surgery, which was really good news for us. We had a bad time just a few weeks into the chemo as Niamh contracted pneumonia, but she pulled through. She’ll also need a further 28 weeks of chemotherapy following the surgery.
She’s been a real fighter throughout her treatment – the next stage is when we get to the end of her treatment in about three months time. I am still worried about future but we all try to be positive and I am sure she will pull through. I know that we are one of the lucky ones.
Niamh’s biggest worry was about losing her hair. She was given a wig from the Little Princess Trust. This was a huge help in the beginning. Someone made her a couple of lovely scarves which she absolutely loves and wears all of the time! She has also grown in confidence and accepts that she is bald.
The most noticeable thing about her treatment is the nasogastric tube (the one that goes into the nose), rather than the hair loss. Sometimes people look but we smile back and tell them politely that she’s been poorly. Throughout her treatment, Niamh has had good energy most of the time. The main problem has been joining in with group activities because of the risk of infection.
Wonderful friends and family
Niamh was also really worried that her friends would forget her but their families have been wonderful. We’ve all worked hard to ensure that we keep in touch. She now feels very comfortable, confident and reassured that she still has friends.
When Niamh was diagnosed with cancer, it affected our whole family. Niamh has a twin brother, Zach, and neither of them have had chickenpox. They were both off school to avoid catching it.
Her older brother Ethan has been a great help throughout Niamh’s treatment. He had a heart transplant a few years ago so had experience of hospitals. Niamh used to see him going off to hospital and coming home, so hospital trips have a big part of all of our lives in a positive way. Ethan really helped Niamh to be less worried about her trips to hospital.
We tried to make the process as child-friendly as possible – we called the tumour a ‘lump’ and we were given various books for Niamh and her brothers to read. When she asked the question ‘have I got cancer?’, we were really shocked, as we never really used that word.
Of course, we were terrified when we heard the word cancer. It’s a dreadful disease at any age, but we know more about it than Niamh does so she’s taken it all in her stride. She’s adapted very well, and at that age, your old life fades away quite quickly. She calls her scar her ‘lucky line’ as she knows it saved her life.
It’s important to be as honest as you can be about what’s happening; the children look to you to see how you are feeling so we tried to appear as normal and positive as we could be. But it’s difficult.
I still have lots of questions
I still have lots of questions today about Niamh’s condition. Wilms’ tumour is really rare so it’s been hard to find anyone going through the same as us. We’ve met a number of families, but everyone is different and some childhood cancers are so rare that there aren’t many of us! I would love to hear from anyone who has been affected by this.
We know it’s sometimes harder for other children and we truly appreciate that we’ve been really lucky to have received the best news at each stage of Niamh’s treatment. The service from the medical teams has been incredible. Everyone has been amazing. They all have such a positive outlook and have been a cheerful distraction for Niamh.
Important research into childhood cancer
We met Eddie Kidd recently and he told us about Children with Cancer UK. We also saw the front of the Children with Cancer UK offices when we came to Great Ormond Street Hospital for Ethan’s treatment.
Raising awareness of childhood cancer and raising money is so important. I’m so glad that Children with Cancer UK are putting so much money towards research – Niamh is just one child who is benefiting from this essential work and she’s doing amazingly well now.
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