‘On Christmas Day I smiled but I couldn’t help but look at Vanessa and wonder if this was her last Christmas’

Published on Monday 23 January 2012 21:20

The only hope Connie and Chris Riddle have of saving their daughter from a rare form of cancer is treatment in the USA costing £500,000. Maria Croce meets a couple determined to give their little girl the best chance they can

AS Connie Riddle watched her 11-year-old daughter, Vanessa, excitedly opening her presents on Christmas Day she made sure her smile was unwavering. But inside her heart was breaking as the thought that this could be her daughter’s last Christmas flashed through her mind.

Just a few days earlier life had seemed to be getting back to normal. It looked like Vanessa had beaten a rare form of childhood cancer, neuroblastoma, after extensive treatment, because she’d been in remission for 16 months. But just before Christmas a scan revealed the cancer was back.

Connie and husband Chris from Loans, near Troon, in Ayrshire, were then told there is no treatment available in the UK for patients of the condition who relapse – so doctors warned them their youngest daughter now had little chance of survival.

Office administrator Connie and sales manager Chris, both 41, initially decided not to tell their daughter she was ill again and also wondered if it would be best to accept the bleak prognosis and let her slip away. But then they found out there are treatments for relapse patients such as Vanessa available in the US – but at a huge cost. They have now ploughed their energies into an appeal to raise the £500,000 needed for Vanessa to have US treatment which is likely to include antibody therapies unavailable in the UK. Vanessa will need to start medical help within three to six months, so it is a race against time to raise the funds. As the couple sit in the lounge of their cottage, their two mobiles and the landline ring every few minutes. There are offers of help from wellwishers wanting to stage events to raise funds.

Their appeal to save their daughter has touched the hearts of countless other families. Chris says: “I know parents must be thinking what would they do if that was their child. But somehow you just get on with it and cope.”

“It’s every parent’s worst nightmare to find out something is wrong with your child,” adds Connie. “But I think that’s what everyone can identify with and why so many people want to help.”

Incredibly, in just a week after launching the appeal, they raised £100,000. But it is still much less than the £500,000 needed, so they are not complacent. The appeal has given them a focus – and the amazing response has given them hope and renewed energy. Their older daughter, Olivia, 15, has also been involved, spreading the word via Facebook and Twitter – sometimes running two laptops at once. And she says there have been a whole host of famous names retweeting the appeal for help, including Katy Perry, Dannii Minogue, Lord Sugar, and Peter Andre.

Just a few weeks ago as Christmas approached, the bewildered couple were feeling very differently. But even in the depths of despair they still managed to wear brave faces in front of their children. Connie had broken down in tears at the news when Chris had phoned her at work to tell her doctors had revealed the cancer was back – but she had composed herself as she rushed home so that she could be smiling to greet Vanessa. Connie says: “We didn’t tell the girls when we heard the news it was back. We decided we wanted to get Christmas out of the way first.”

But throughout their ordeal, the couple have never wept in front of Vanessa. Connie says: “I do cry at night – but not every night. There are moments that set me off. But we never cry in front of Vanessa. We don’t want her to see anybody upset.”

Even on Christmas Day the couple managed to keep their sadness inside. “On Christmas Day I smiled but I couldn’t help but look at Vanessa and wonder if this was her last Christmas – it was heartbreaking,” says Connie. “Vanessa was jumping up and down with excitement as she opened her Kindle just like any other wee girl enjoying the day. She didn’t look sick. If your child was in bed extremely ill you would say to yourself, ‘She’s dying’. But Vanessa looked fine. It was very surreal.”

“At first we thought we weren’t going to do anything. We were just going to let her go and not tell her she was ill. We didn’t know what to do. I didn’t want her to know she was going to die,” Connie adds, tears tripping over her eyelashes, allowing herself an emotional moment, as Vanessa is at school. “I don’t know if that would have been the right thing to do. But as a parent you want to protect your child from as much as possible. Even when she was first diagnosed I didn’t want her to know it was cancer. There hadn’t been any cancer in the family so she wouldn’t necessarily have known what it meant. But we told her it was a germ in her body that had grown a lump.

“One time in the doctor’s surgery she said, ‘If I didn’t go to hospital would I still be here?’ I said, ‘We don’t think about that’.

“She knew what she’d had was life-threatening. I didn’t want her to know it was back because I didn’t want her to think about that. I’m sure it must go through her head but she’s not spoken about it. We just try and protect her from as much as we can.”

As the news began to sink in, the couple tried to work out what to do. “I asked the doctor to tell me if there was anything that could be done in the UK and whether anyone had survived a relapse and he said ‘No’.” Then the couple discovered there are different treatments approved in America, so Vanessa now knows she is ill and needs help in the US to make her better. For the family, the chance of a treatment that could increase Vanessa’s chances of long-term survival is in sight. There is just the mammoth task of raising enough money first. They questioned whether selling their home was an option, but Chris reasoned they still needed somewhere to live, particularly for Olivia – and selling up would not raise enough for the treatment. Now their focus is on researching treatments and trying to get together enough funds. They do not think too far ahead. Connie says: “You do live each day. You don’t think about what’s down the line, you deal with what you have got at the moment. We were starting to get to planning ahead again and then Vanessa relapsed. It makes you feel very vulnerable. You realise everything in life can change in five minutes.”

But the couple refuse to let the situation bring any of them down; they are trying to cling on to a sense of normality in a very abnormal situation. Connie says: “It’s not in our nature to be down. We’re positive. Of course you’re in the depths of despair but you can’t stay there for that long. Vanessa will say to me, ‘Are you worried about me? And I say, ‘I worry if you or Olivia have a cold, but you are going to get well again’.”

Chris says: “You focus on what can you do about it, what’s next? What are the treatment options – that’s what keeps you going. At first I felt angry that there wasn’t anything that could be done to save her in the UK. But now I’m putting my energy into finding that help somewhere else. I think it’s wrong that in this country, no money is invested in looking for relapse treatments for this disease. They’re letting children die.”

The couple, though, are full of praise for the help Vanessa has received up to now. Chris says: “We don’t want to be derogatory about the NHS because we’ve had excellent treatment. But now we have just stepped outside the boundaries of what’s available.” Connie adds: “I’m not angry with the doctors – it’s the system I’m angry with.”

The couple insist their relationship is weathering the stress. Connie says: “We’ll have been married for 20 years in July and we met when we were 16. We’ve sniped at each other over what we’re doing for Vanessa. But it’s nothing serious. We’re in this together. You have to work together, we’re a team. Olivia needs support as well. We’ve always tried to keep to our routine. Olivia was very understanding if at times we’ve had to go somewhere or change plans because of Vanessa’s illness.”

Connie had already realised the fragility of life after her father was in 1995 diagnosed with muscle-wasting Kennedy’s Disease and spent his later years in a wheelchair until he died, four years ago, at the age of 72. It is completely unrelated to Vanessa’s cancer – but Connie discovered she is a carrier of the hereditary disease that only affects males in adulthood. “I chose not to have the tests when I was pregnant with Olivia or Vanessa,” she says. “I thought even if I’d discovered I was carrying a baby boy with the condition I would still have had him.”

She felt fortunate to have two daughters – so decided not to have any more children. But then she was dealt the devastating blow that, at eight, Vanessa had cancer. “Focusing on the appeal is something positive to do that keeps us going,” she says. “So much of our life is out of control. As parents you’re normally in control of what’s happening with your children. But with Vanessa we have wait for her doctors to tell us what’s happening. We do think we’re going to do it. You just keep going because what’s the alternative? You could lie in your bed and not get out. But that’s not an option for us. We’re optimistic but we’re also realistic. We can’t dwell on whether it might not work.

“No-one is guaranteed that they’re going to be here next year – that’s life. But we want to give her the best chance we can.”

• Neuroblastoma is a rare cancer that affects children, mostly under the age of five. Only around 100 children are diagnosed with neuroblastoma each year in the UK.

• Neuroblastoma develops from the cells left behind from a baby’s development in the womb.

• This type of cancer often starts in the abdomen, commonly in the adrenal glands or the nerve tissue at the back of the abdomen. It can spread to other parts of the body, such as the bones, liver and skin, through the blood and lymphatic system.

• Marta Hofstrom, fundraising co-ordinator at the Neuroblastoma Alliance UK, says: “The Neuroblastoma Alliance UK is helping the Riddle family fundraise for Vanessa’s treatment in the US. We hope that people will donate or fundraise for her appeal so Vanessa can get the treatment she needs in the US.”

www.justgiving.com/vanessa-appeal

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Next Generation Photodynamic therapy

Sunday, February 5, 2012 at 08:41 PM

Isn't it awful that this wee lassie has to go to the USA for treatment - A member of my own family has cancer, he has to have treatment in England. Why is Scotland lagging behind the rest of the UK & Europe, Why can't our own be treated in Large City Hospitals such as ERI, Western & other Scottish City Hospitals? Our NI contributions go to hmrc England, there are no shortages of Centre of Excellence in England. Take for example New Generation Photodynamic therapy, which is proven to kill Cancers of many types, I'ts cheaper and less invasive - and has had excellent results shorter hospital stay's- but we don't have full access to it in Scotland - meanwhile in England they do.. We are paying for an NHS System that obviously is not working for the good & Health of the Scots. We are being fed c r a p - Wake up Scotland !!

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Charles Linskaill

Monday, January 23, 2012 at 02:15 AM

I am right in saying that we who have all read your heartbreaking dilemma, Wish you All our very Best on your plight to have Vanessa cured, Lovely photo by the way.

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Charles Linskaill

Monday, January 23, 2012 at 01:56 AM

I am right in saying that we who have all read your heartbreaking dilemma, All our very Best on your plight to have Vanessa cured, Lovely photo by the way.

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