'Sorry, your child has cancer'
Jul 21 2008 Agenda
Teenage and cancer are two words one never hopes to hear in the same sentence. Solihull banker Diane Watt explains how her personal experience has led her to become a lifelong campaigner in helping improve provisions for teens with cancer.
On 16 June 2005 my daughter Maria was diagnosed with leukaemia. She began treatment straight away but only three weeks after the initial diagnosis, she got a nasty virus. I lost her the very next day. It was three days after her 17th birthday.
We had very little time to digest the fact that Maria had been diagnosed with this cruel illness. Doctors and nurses were very reassuring, saying she had a 70-80 per cent chance of survival, but it never entered our heads that there was a 20-30 per cent chance the other way too.
Following the initial diagnosis and tears, Maria showed exceptional bravery. The next day she began phoning her friends. I really admired the way she just said “I’m in hospital and I’ve got leukaemia”. I even heard her laughing on the phone. From that point on I knew she was up for the fight. Taking her lead, so were we.
All thoughts about cancer left our minds and the word leukaemia didn’t sound too bad. The days and weeks that followed were spent visiting Maria in hospital and lifting her spirits. Friends, family, everyone came. Her friends from school brought her hats – the one thing that was upsetting her was the thought that she would lose her beautiful blonde hair. She turned to me one evening and started the conversation “Mom. . .” I knew something was coming as I recognised the way she said “Mom”.
She said “I’ve come to terms with losing my hair – I’ve got more important things to think about haven’t I!” I admired her bravery, but underneath I knew that this was the one thing she was not coming to terms with. I was glad she was worried – it meant she wasn’t worrying too much about the leukaemia.
However, despite her bravery and courage, Maria contracted a virus only three weeks after diagnosis, which proved too much for her immune system after such intense chemotherapy.
Losing our precious Maria to leukaemia, which we thought was curable, has been as destructive as the illness itself.
Our hearts are broken and our lives devastated – no parent should hear the words “I’m sorry, your child has cancer”, let alone “I’m sorry, there’s nothing more we can do”. The only way I can describe how we feel now is that someone has ripped out our hearts, scrunched them up, trampled on them, put them back in and said “now go on – get on with it”.
Sadly Maria’s story is not as rare as you may think. Every day in the UK, six teenagers or young adults are diagnosed with cancer. That’s six families who will have been sat down by a consultant and told the devastating news that we were told. Six more will be told that tomorrow and six more the day after and so on.
To be diagnosed with cancer is distressing at any stage of life, but it is particularly hard for a teenager to deal with. They are old enough to fully comprehend what being diagnosed with cancer means, yet are still so young to deal with the emotional strain that comes with having such an illness.
These young people, in the midst of their already difficult journey to adulthood, suddenly find themselves faced with a possible life-threatening illness. Many must put life on hold, just as it is starting to take off.
Since Maria’s untimely death, life is very difficult but I try to focus my grief on doing something positive, so I decided to set up a charity in her memory: The Maria Watt Birmingham Foundation for Childhood & Teenage Leukaemia.
If this could happen to my 17 year-old daughter who ate healthily, led an active life, didn’t smoke, didn’t drink; in essence did all the things we are told to do for a healthy lifestyle, then it can happen to anyone.
The main aim of the charity is to make as many parents and teenagers aware of the signs and symptoms of leukaemia, as some can be easy to dismiss: Headaches, lethargy, pains in the backs of the legs and swelling of the stomach are all common teenage ailments. As parents, we know our children best and we should not just dismiss these signs. We hope that this increased awareness will result in earlier diagnosis, in turn leading to earlier treatment and hopefully a better prognosis for the future.
Our foundation is also supporting the work of Teenage Cancer Trust (TCT), a national charity devoted to improving the lives of teenagers and young adults with cancer.
Teenage Cancer Trust is currently building specialist teenage cancer units at hospitals throughout the UK; in the Midlands there are three in development at Birmingham Children’s Hospital, Birmingham Royal Orthopaedic and The Queen Elizabeth.
Each unit costs in the region of £2 million and will cater for six teenagers at any one time. These units are important, as more often than not, teenagers and young adults will be treated in inappropriate facilities with inadequate support options. Until the age of 16 a teenager is likely to be treated in a paediatric ward alongside toddlers. Diagnosis after turning 16 will likely to result in being treated in an adult ward with elderly patients.
Both of these scenarios are far from ideal as the young person is in an environment with people they will not fully relate to. It is imperative that teenagers are treated in a comfortable environment where they have the opportunity to meet other people their age who understand what they are going through.
The TCT units will not only treat the illness in a cleaner, safer, teenage-friendly environment but will also cater for their psychological needs as well as focusing on the future; whether it be continuing with education or entering the workplace. Perhaps best of all, there is a 15 per cent better chance of survival if treated in a specialist unit. Additionally, the new unit at Birmingham Children’s Hospital will free up much needed bed-space for local children diagnosed with cancer.
This issue is particularly close to my heart as we had first hand experience of how difficult teenage patient care can be. Maria was treated at Heartlands Hospital and although the care she received was absolutely terrific, they simply were not equipped to care for a teenager.
The Maria Watt Foundation unequivocally supports the proposed Midlands units and it is our aim to raise enough funds to pay for one of the rooms within the Birmingham Children’s Hospital unit in memory of our daughter. We need to raise £200,000 for this to happen.
Our charity is also raising funds to start new research into the causes of leukaemia in teenagers and young adults. As the incidence of leukaemia is growing among this age group and as no one has been able to tell me why my Maria got this illness, I am keen to find the cause in the hope of eradicating it in the future.
As you can imagine, running the charity has been time-consuming but luckily I have had the full support of my family, friends and employers and colleagues at Allied Irish Bank (GB). Indeed, a team of senior national Allied Irish Bank (GB) management headed up by managing director Robbie Henneberry have raised nearly £4,000 by completing a gruelling 10k run.
In addition to this, our charity also organises several fundraising events over the year. Last year 27 very unfit 40 something’s decided to enter and train for the Coventry Half Marathon raising £22,000.
Since Maria’s death our family unit has changed beyond recognition. Our relationships have changed. Imagine a stool with four legs. If one leg of the stool is cut off, what happens?
The past few years have gone by in a blur and not a minute has passed when I haven’t thought about her. She would be nearing her 20th birthday now and I can’t help but wonder what her life would be like had she survived.
All we can hope is that by raising awareness of teenage cancer, we will prevent other families having to go through what we have.
