December is Childhood Cancer Awareness Month, so we asked one of our favourite charities Starlight to explain to us what the month of December means to those families with little ones suffering from Cancer, followed by an interview with brave mum Beverley Trew, who discovered her son Joshua had cancer in 2010.
Research says over 100,000 poorly children in the UK will spend time in hospital this Christmas. Starlight Christmas of Happiness campaign aims to light up thousands of little lives.
This Christmas over 100,000 children will spend time in hospitals and hospices across the UK. Many of these children will be suffering from life-threatening illnesses and, for some, it will be their last Christmas.
The Starlight Christmas of Happiness returns this year with the aim of restoring the magic of Christmas to the thousands of children in hospital during the festive season. The charity is asking the nation to help bring once-in-a-lifetime wishes and festive entertainment to poorly children across the country this Christmas by making a donation to the campaign (www.starlight.org.uk/christmas/2012/).
One child that knows just how hard it is to be very unwell at Christmas is seven year old Joshua Trew from Wickham St Paul’s near Suffolk. Joshua has been suffering from an optic glioma, which is a form of brain tumour, and for the last two Christmases he has been undergoing intensive treatment in hospital to fight the disease.
In November 2010 Joshua began complaining that his vision was fuzzy and, after a high street test showed no signs for concern, Joshua’s mum Beverley took him to an eye specialist. The ophthalmologist detected that Joshua’s eyes were not functioning properly due to a shortage in blood supply and, to the family’s horror, further tests revealed that this was being caused by a brain tumour.
Joshua was rushed to hospital and he immediately began an intensive course of chemotherapy treatment. His mum Beverley said, “It all happened so quickly and, although it was his dad’s birthday the day after, we just didn’t celebrate that year. It was such a shock for us all, including Joshua’s older brother Archie who couldn’t understand what was happening to his brother.”
Like most children his age, Joshua loves Christmas and it has been really tough for him to have to spend his favourite day of the year feeling really poorly in hospital. Joshua always looks forward to the arrival of Santa and, when undergoing brain surgery in hospital over Christmas last year, he told his family that he was worried Santa wouldn’t be able to find him if he was on the children’s ward, rather than tucked up in bed at home.
After the challenges he has faced, this year Starlight hopes to make Joshua’s dearest Christmas wish, to wrap presents with Santa, come true. With the help of its supporters, the charity would like to send Joshua and his family to Lapland to meet Santa, which will be a magical once-in-a-lifetime experience. Joshua and his parents Beverley and Peter and his brother Archie will be treated to husky dog and reindeer sleigh rides, a trip to a snowy, enchanted forest, and of course the chance to wrap Christmas presents with the elves and the Big Man himself!
Starlight believes that every child deserves a happy Christmas and The Starlight Christmas of Happiness aims to bring fun, laughter and distraction to poorly children and their families by granting magical wishes and providing festive entertainment in children’s wards across the country.
To support the Starlight Christmas of Happiness, please visit www.starlight.org.uk/christmas/2012/.
Q&A with Beverley Trew
When did you first discover that Joshua had cancer? Tell us a bit about what the symptoms were, and how quickly the tumour was identified.
Monday, November 29, 2010. Joshua was 5 year’s old and had complained of “fuzzy” eyes. After an eye examination, he was sent for an MRI scan. We had the results that afternoon and subsequently discovered that Joshua had an Optic Glioma caused by a condition called Neurofibromatosis. We met with oncologists the following day and by the end of the week, he had had surgery to insert a Hickman Line and his first bout of chemotherapy.
For the last two Christmasses Joshua has been undergoing intensive treatment. How is he doing now, has he made a full recovery, and what did his treatment involve?
Neurofibromatosis is a condition which causes benign tumours to grow on nerve endings. Joshua’s Optic Glioma cannot be operated on and cannot be blasted aggressively with chemo – Neurofibromatosis doesn’t respond well to that. Hence why Joshua’s chemotherapy treatment was over a period of 18 months, which was intense in itself. He had two types of chemotherapy and required regular blood transfusions along the way. He also had a permanent feeding tube inserted (PEG) as he lost 1/3 of his body weight.
Post treatment and Joshua is doing really well. The tumour is still there but that is the very nature of Neurofibromatosis and we have to stay positive that the tumour will not grow aggressively again. Joshua lost some of his sight and is now registered partially sighted.
It must have been devastating for you, how did you and your family cope and what advice do you have for other parents going through similar ordeals?
We didn’t have time to think and we simply took each day at a time. We had to stay strong for both our boys – night time was when I would crumble! My advice? Crikey that’s a hard one. To any parent who is going through a similar ordeal – you will get through it, you are stronger than you believe, your child is far stronger than you could imagine! You are not alone.
Was Joshua able to go to school and enjoy any sense of normality in terms of day-to-day life during his treatment, or was he in hospital for most of that time?
Joshua effectively missed a year of schooling. But he was able to attend and we were encouraged by his oncologist to carry on our lives as normally as we could. We found that Joshua really enjoyed the routine of school and was pretty upset when he couldn’t attend.
How did your eldest son Archie cope with Joshua’s cancer, and how did you manage to support both children emotionally during that time?
Archie was amazing. He knew his brother was very ill but we never told him it was cancer – both of them knew Joshua had a spot in his head that needed some special medicine. Supporting my children and being there for them was obviously heightened at this time and I can recall spending the night in hospital with Joshua, “handing over” to my husband then racing in the car to get to Archie’s School Carol Service that I had promised him I would go to. It simply became a way of life and I was always there to talk to Archie.
I have always said we can learn a thing or two from Joshua. I am so proud of him – he took everything in his stride and only towards the end of his treatment did he complain to me that he didn’t want to go to hospital anymore. But I made a pact with him that “we would do it together” and that I would be with him every step of the way as I had always been.
Did Joshua have to undertake a special diet, or take any extra vitamins during treatment? Was he able to enjoy his food?
Unfortunately, Joshua lost enough weight to warrant a nasogastric tube but this eventually became a more permanent fixture and he had a PEG inserted which is a tube which comes out directly from the stomach. This enabled us to give him a special feed which contains a very high amount of calories, and there were periods during his treatment when he would be more dependent on this because food was such a no-go. There were foods that had to be avoided – one I can distinctly remember was probiotic yoghurt (because it is a live bacteria).
During the time you spent in hospital, did you bond with any other families going through the same thing, was there a good support network to help you get through?
We met a number of amazing families along the way. Joshua was at Addenbrookes Hospital and we were assigned a Clinical Nurse Specialist who I could ring if I had any questions or concerns.
You must be incredibly proud parents, tell us a bit about how such life changing events puts things into perspective.
We are a close family, but I think Joshua’s illness has brought us even closer and we try to do even more now as a family. I don’t worry about things as much as I used to – I would say we are enjoying life more.
What’s on Joshua’s Christmas list this year and how do you plan on spending the day?
Joshua wants an easel and paints, Mini Go’s, Kermit and Miss Piggy, and he wants to adopt a snow leopard! This year, it is just the four of us at home on Christmas Day and then we are visiting family thereafter. Wonderful!
Tell us about your trip to Lapland and what the charity Starlight means to you.
Without question or hesitation, Joshua was granted his wish to meet Father Christmas in Lapland and we are all so excited – only 3 days to go now! Starlight is absolutely priceless – they go to the heart of every child, bringing happiness to children who have been through things they should never have to go through.
Joshua and your family have attended some of Starlight’s hospital escapes, such as its annual party for 400 poorly children at Popham Airfield. What does it mean to be able to spend a day together having fun after everything that you have been through?
To receive an invitation to go to Popham was wonderful. We didn’t have a clue what to expect and when we got there, we were all completely blown away – I didn’t know whether to laugh or cry. There were helicopters, planes, hovercraft, classic cars, Harley’s … and we could ride on them for as long as we liked for free! We have fantastic memories of the day which will stay with us all forever, but more importantly, it is another good memory for Joshua. That’s what we want for our children – happy memories, a happy childhood and laughter all the way.