“I didn’t think Pippa was too bothered about losing her hair with chemotherapy, but when children at nursery were asked to make a wish ….. Pippa wished she had some hair.”
Mum Claire Gibb today tells of the family heartache and the tough journey which has seen their ‘cheeky, caring and smart’ three-year-old daughter Pippa, diagnosed with a rare form of cancer.
Now the Gibb family want to raise awareness and encourage others to look out for early warning signs, after it took almost a year to confirm what was wrong with Pippa, despite several symptoms.
They speak out during Childhood Cancer Awareness Month, which is backed by the Children’s Cancer and Leukaemia Group, as early diagnosis can help to save lives.
The family has told of their experience after their daughter Pippa Gibb was diagnosed with a rare form of cancer.
Little Pippa, who is three, is now undergoing gruelling chemotherapy at Leeds General Infirmary, after tumours were found on the pituitary gland, in the skull bone at the top of her head and below the right eye.
Doctors removed some of the lesion on the top of her head during biopsy surgery but couldn't get it all.
Diagnosis was difficult and took almost a year, after doctors said her excessive drinking could be down to behavioural issues, but parents Claire and John Gibb insisted they had a ‘gut feeling’ that something else was wrong.
Claire, 36, a solicitor from Adel, said: “She would not stop drinking, wherever and however she could, even from the paddling pool, bath or an old watering can.
“They had already ruled out diabetes mellitus (sugar diabetes) with blood tests but it got worse until she was consuming around 2.5 litres a day, which is almost double what she should have been having.
“Then, over time, she began to lose a lot of weight, was becoming withdrawn and lethargic, had a delay in hitting developmental milestones and was not growing in height.”
The Gibb family, from Adel, are speaking out in a bid to help others spot any symptoms, as part of Childhood Cancer Awareness Month during September, a campaign backed by the Children’s Cancer and Leukaemia Group.
Each week in the UK and Ireland, more than 30 children are diagnosed with cancer. Two out of ten children will not survive their disease. An early diagnosis can help to save lives.
Claire and husband John, a civil engineer, who also have baby Austin, aged seven months, first began to notice that Pippa was unwell when she was around 18 months old, in January 2018.
But it was not until December last year that Pippa was diagnosed with Langerhans cell histiocytosis, a very rare form of cancer, affecting only 50 people a year in the UK, mainly children.
She also has Diabetes Insipidus, a condition unrelated to type one diabetes, characterised by large amounts of dilute urine and increased thirst.
Pippa is undergoing chemotherapy every three weeks until the end of the year but her parents remain optimistic: “We have to be positive about it all. We just get on with it. We are happy that Pippa is feeling so much better and is back to her old self again, the cheeky, caring and smart Pippa we know. Thankfully, we now know what is wrong and how to treat it.”
She will receive hormone therapy and regular MRI scans for the rest of her life after the damage caused to her pituitary gland. Regular checks will be needed for many years to ensure she keeps well.
Claire added: "While I was in labour with Austin, Pippa was having chemo nearby at Leeds General Infirmary, so it was a very busy time. By coincidence, it is actually a good time to be on maternity leave.”
Claire added that they wanted to thank staff at the LGI for their wonderful care at the Oncology and Haematology Department.
"The staff at LGI have been wonderful with Pippa since her diagnosis, but with hindsight I wish we'd have pushed for a diagnosis earlier, rather than believing it was behavioural, as doctors initially suggested," said Claire.
“Parents should trust their instincts when it comes to their child’s health as they know them best, so if there is something not right they should push for a diagnosis.”
Parents urged to trust ‘gut instinct’
A CANCER charity is backing the Gibb’s call for parents to trust their gut instinct as it raises awareness about the importance of spotting the signs and symptoms of childhood cancer early.
The Children’s Cancer and Leukaemia Group (CCLG) is raising awareness during September, which is Childhood Cancer Awareness Month.
The campaign is part of the wider ChildCancerSmart project, which aims to reduce diagnosis times for children with cancer.
A CCLG survey found that:
6 in 10 people are not confident they would be able to spot the signs of cancer in children
Around 1 in 450 children diagnosed with cancer before the age of 15 - 49 per cent of people said this is more than they expected
Around 1 in 180 young people diagnosed with cancer by age of 25 - 56 per cent of people said this is more than they expected
7 in 10 people would consult a GP for advice on signs and symptoms
If cancer is caught in the later stages, treatment is harder, more expensive and less effective for children, which often comes with lasting medical problems. If it is caught earlier, the treatment is easier, kinder, less expensive and more effective.
Research carried out by CCLG and The University of Nottingham, has found that there is a lack of awareness of the signs and symptoms of the disease in children, even though around 1 in 450 children under the age of 15 are diagnosed with cancer each year.
A cancer diagnosis at a more advanced stage can mean that treatment is less effective and can also mean that patients have more severe long-term health issues as a result of more intensive treatment and its side effects.
Factfile: Common symptoms to lookout for
Parents know their child best. Many symptoms of childhood cancer can appear to be minor ailments, but coupled together can give tell-tale signs that it could be something serious.
Many parents – including Claire Gibb - said that they had a gut feeling or instinct that something wasn't right with their child so it is important that your concerns are listened to.
This is why parental concern is listed as a high priority for GPs to consider when referring a child or young person to hospital for suspected cancer.
Common signs to look out for symptoms of childhood cancer can include:
Feeling very tired and/or pale skin
Persistent infections such as ear, throat and chest
Flu-like symptoms that don’t go away
Blood in urine, poo or when being sick
Bruising easily or a rash of small spots
Sweating or fever especially at night
Aches and pains that don't go away, especially in the bones, joints,
back or legs, and may be worse at night
Unexplained new limp or leg weakness
Feeling a lump, swelling or unusual firmness anywhere on the body
Weight loss or slow growth
More details at: www.cclg.org.uk