A helping hand for young people to handle their lives after cancer

For 15-year-old Lauren Parker, the hardest part of recovery after getting the “all clear” from leukemia was getting back to life as a normal teenager.

 Having bravely coped with the hair loss, weight loss, pain and illness, Lauren did not realise she would need the help and support of a special group to get her back into normal life. 

 “When people hear you are in remission, they think it is great and you can get back to normal straight away, “ explains Lauren, from Swallownest, Sheffield.

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“But it is hard to remember what normal life is like.

“It’s like you’ve been living in limbo for two years, your whole world revolving around cancer.”

It was not only a stressful time for Lauren, but also for her mum, Rachel, who wanted to make everything as easy as possible for her little girl.

But children’s cancer workers at The Children’s Hospital, Sheffield, started to realise that children were becoming increasingly stressed and now lead a pioneering programme which keeps young people and their families in the fold helping them readjust to what can be a difficult time.

 “My mum and I were really worried, scared the disease might come back, but the leukemia nurses invited us to their end of treatment meetings where we could go and meet other children and families who were finishing their treatment too.

 “It was great to meet other teenagers who had experienced what I had been through. We were comparing how differently our hair had grown back, mine’s really thick now!”

 Lauren, who goes to Aston Academy, was diagnosed with acute promyelocytic leukemia in 2009 when she was just 12-years-old.

Doctors said she had the lowest blood count they had ever recorded.

 Usually the bone marrow produces stem cells which are allowed to mature into “adult” blood cells. However, in cases of acute leukaemia, the affected bone marrow begins to release a large number of immature white blood cells that are known as blast cells.

The immature white blood cells begin to rapidly disrupt the normal balance of cells in the blood. This means that the body does not have enough red blood cells or platelet cells. This can cause symptoms of anaemia, such as tiredness, and increase the risk of excessive bleeding.

Also, as the white blood cells are not properly formed, they become less effective at fighting bacteria and viruses, making you more vulnerable to infection.

After Lauren was diagnosed as suffering leukemia, she spent the next two years having intense chemotherapy and blood transfusions, and battling complications like pneumonia.

This meant constant hospital stays, and a lot of disruption and worry for the teenager.

 She went into remission in November 2011 and it was then that she was helped by the Children’s Hospital’s pioneering project.

Since November Lauren has taken part in an end of treatment meeting designed and run by the hematology and oncology team which has really helped her come to terms with going back to life as a normal teenager. For Lauren’s mum Rachel the sessions were also invaluable.

Her eldest daughter had previously suffered a benign liver tumour and so Lauren’s leukemia came as a double blow.

“When Lauren was diagnosed I couldn’t believe this was happening again,” she said.

“She went straight on to chemotherapy treatment and I didn’t think things could get any worse. It was a terrible time, but we got through it, all the family together.

“What I didn’t anticipate was that it was going to be even harder when she finished her treatment than when she started it. The end of treatment meetings were incredible support, meeting other parents was such a great help. To talk with people who had been through what we had and who understood us was very comforting.

The session give children and teenagers the chance to talk with each other about their experiences and their fears as well as talk with profressionals.

“It was great to see Lauren interacting with the other teenagers, comparing scars and treatment stories – they made some really moving collages of all the words they were feeling since finishing their treatment,” said Rachel.

Tracy Twyman, lead leukemia sister at Sheffield Children’s NHS Foundation Trust explained the idea behind the end of treatment sessions.

“Our team really started to notice the stress and anxiety which was being felt by families as their child reached the end of their treatment and we knew we needed to provide extra support for them,” she said.

“We decided to structure our support in the form of group meetings to help lead them through the process of coming off treatment and the emotional and psychological issues it can bring. It’s been really successful.”

So successful that other hospitals around the country are now looking at following in Sheffield’s footsteps.

 There have been more than 14 end of treatment meetings run since 2005, with up to 24 patients, parents and even grandparents attending.

 “The meetings let the families relax and realise they can move on from cancer, but also that our support will continue,” says Tracy.

“The families need to know they are still supported because what they have been through is hard to understand unless you have been on a cancer journey yourself.”

 Leukemia nurses, a late effects nurse and a CLIC Sergeant cancer charity nurse all take part in the sessions which allow parents and patients to share their stories and journey.

The sessions also allow youngsters and their brothers and sisters to express themselves through art and play.

Over last five years The Children’s Hospital has treated 103 children with leukaemia.The median age is five years.

The majority of children live in Sheffield, Doncaster, Rotherham or Barnsley but they also treat children from a wider catchment area.

 Lauren, who is planning to enroll on a child and social care course when she leaves school this summer, adds: “Leukemia is something I will never forget and an experience that will stay with me my whole life, but I now feel lucky enough to be able to leave it in the past and move on with my life.”

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