Every cancer diagnosis is difficult. And being told that your child has cancer can be particularly harrowing. Four years ago Ruth and Ben Hillman were told that their baby daughter Georgia had a rare kidney cancer called Wilms’ tumour. Each year in Great Britain around 73 children are diagnosed with this cancer. The good news is that Wilms’ tumour is now curable in more than 9 in 10 cases.
Every one of these ‘9 in 10’ is a child with a family, not just a statistic. And each has their own story. This is Georgia’s story:
As Georgia approached her first birthday, she was just like any other child: bubbly, increasingly mobile, and seemingly healthy. But, one Sunday night in August 2008, after her bath I noticed her tummy felt firm as I was blowing raspberries on it. The previous Thursday I’d been at a coffee morning where I’d been tickling another boy’s tummy and noted that his was all squidgy. I didn’t think much of it at the time, but that night, alarm bells started to ring.
On Monday I called the health visitor and they said to take Georgia to Tuesday’s baby clinic. There they said it didn’t look quite right, and should be checked out by a doctor. I thought she’d maybe swallowed a toy as she was always putting something in her mouth.
The only appointment was for last thing the following day, but I still wasn’t comfortable so I called for an emergency appointment and went in at 8.30.
The doctor said there wasn’t anything wrong with her. Uncomfortable with this, I asked to be referred to a Paediatrician. I was told this could take up to six months. After speaking to many private hospitals that morning, I finally found someone who would see Georgia and called my doctor for a written referral. She finally agreed to phone the Victoria Hospital in Kirkcaldy to discuss Georgia. I believe that Georgia was pretty much diagnosed over the phone as I was told to bring her in immediately.
When we arrived at the hospital, they immediately took her down for an x-ray. I remember being chaperoned everywhere; everything moved quickly and a nurse wouldn’t let us out of her sight. My husband, Ben, was working in Birmingham at the time, and I asked whether I should get him home. Initially, I was told to wait and see. Then she had an ultrasound and I asked the nurse again ‘should I get my husband back?’. I remember her words vividly: “I’ve never seen a child rushed through x-ray and ultrasound quite so quickly in all my years as a nurse; if it were me I’d be getting my husband back straight away.” He was on the next flight home.
Later that afternoon I was told there was a large mass in her tummy. They were fairly confident it was coming from her liver, but they would not indicate whether it was benign or malignant. We were told to report to Edinburgh’s Royal Hospital for Sick Children the next morning, and to take overnight clothes and accept that we might not get out for some time. Georgia and I went home, I somehow managed to get her fed and to bed, and waited for Ben to arrive home. We spent a sleepless night, scared, tearful and bewildered. We had gone from the excitement of organising her first birthday to potentially having a sick child in the space of a couple of days.
No-one had warned us we were going to an oncology ward at the ‘Sick Kids’, and walking onto the ward the following morning and seeing children undergoing treatment and fighting for their lives, was a massive shock. We felt complete frauds with our bouncing baby who had no signs of illness apart from a well-fed tummy! Little did we know how this ward would become a place of refuge, understanding and support over the coming year.
On that first day on the ward, they redid the x-ray and ultrasound. They confirmed that the tumour was coming from her kidney, and was spreading out into her abdomen, pushing all other organs aside. The next day she had an MRI scan and biopsies of the tumour.
Three days later we celebrated her first birthday. All of the family flew and drove from afar to ‘celebrate’, worried that this was the only birthday we would celebrate with her.
The following day we then returned to the hospital for her biopsy results and received the news that we had dreaded; it was cancer and, worse, it had spread. Our lives were turned upside down.
They told us they were confident it was either neuroblastoma or Wilms’ Tumour. A port – a tube to give chemotherapy – was inserted, and chemotherapy was planned for shortly after that. At this stage we didn’t have a definitive diagnosis, but the tumour was too large not to start treating. A second, surgical, biopsy was also arranged prior to the chemotherapy starting. Weeks later we had confirmation that Georgia had a stage 3 Wilms tumour.
The plan was to give her six weeks of chemotherapy to shrink the tumour before surgery that would remove both tumour and kidney. Shortly after diagnosis they decided to introduce a third, intensive drug, doxorubicin in the hope that Georgia could be treated without radiotherapy, which would have such a profound long-term effect on her wee body. It was a blow – we had done our research and it was a drug we wanted to avoid, but the tumour reacted dramatically and I swore I could see her stomach shrinking before my eyes at every nappy change.
Her first dose of doxorubicin was given to her when her white blood count was very low and she became ill with hand, foot and mouth disease. For any other child this is easy to shake off but not for Georgia, who fought against an unrelenting high fever in hospital for ten nights.
When her health improved, chemotherapy recommenced and, the day before my husband’s birthday in November, she had a seven-hour operation to remove the tumour and kidney. When the doctors met with the surgeons, they couldn’t believe they had managed to do it through keyhole surgery. In two months it had shrunk from the size of a football to that of a satsuma. After an amazing recovery from major surgery, she was discharged after less than 48 hours.
The pathology of the tumour was positive, and it was agreed that Georgia would be treated with another seven months of chemotherapy. We then had to make the decision of whether or not to consent to radiotherapy. They were fairly convinced that they had removed the entire tumour in her operation and we trusted their instinct, and decided against putting her through radiotherapy.
During the administering of the chemotherapy drugs, Georgia didn’t understand what was going on but somehow grasped everything that should happen. So, if the nurses didn’t complete a procedure properly she wouldn’t clap…as soon as they did she would clap and smile. She was clapping people who were in the short term making her sick.
When she was not sick, she was a very bubbly, happy child and so very brave. She would never cry or whinge. I know Ben or I would never have coped half as well.
I remember on my birthday in December, she was sick nine times. My husband was upstairs ill in bed and I remember blubbing away, forcing myself to eat some tea in my pyjamas, as I had no clean clothes left. It wasn’t one of my finer birthdays!
Early January, Georgia had a peg inserted for feeding and anti-sickness drugs. This provided a welcome relief for Georgia from all the vomiting, though amazingly she never needed it for feeding. Shortly after, the peg became more trouble than it was worth and became chronically infected. In late April the infection became so bad and internal, she spent a week pretty much fighting for her life.
After fighting this off, in June 2009 she completed her treatment, and in July we were told that she was in remission. She has gone from strength to strength ever since. People are amazed by Georgia when they hear what she has been through. She’s a happy, healthy, cheeky…normal…child with nothing to show for her ordeal other than a few scars on her tummy.
We feel so very lucky to have Georgia still with us and certainly could not be prouder parents of a lovely little girl who has achieved so much in 5 short years.
She’s just started school, four years to the day after she had her first MRI and biopsy, and is loving it. Another milestone ticked off! Another milestone that we thought we’d never quite reach.
Thanks to advances in research, Georgia’s story of successful treatment for Wilms’ tumour is the norm, not the exception. While just 59 per cent of children survived their disease in the early 1970s, 95 per cent now survive.
Cancer Research UK funded scientists and doctors played a key role in a number of clinical trials that have contributed to this improved survival. For instance, it was Cancer Research UK funded work that led to children like Georgia being given six weeks of chemotherapy to shrink the tumour before surgery, reducing the number who need to be treated with radiotherapy.
And in the last couple of years Cancer Research UK scientists have discovered genes that are involved in the development of Wilms’ tumour, which could lead to new and improved treatments for the disease.
But there’s so much more to do – for the 5 per cent who don’t yet beat Wilms’ tumour and for all children who are diagnosed with cancer, whichever type.
With your help, we can and will do more to ensure as many children as possible survive their disease.