For a few weeks leading up Christmas 2010, my three year old son Ben just wasn’t himself. He was looking very pale, felt tired, was complaining of feeling cold, but had a high temperature. On Christmas Day, he and his sister Chloe were both poorly with ear infections. She got better but Ben continued to feel unwell.
In early January, I took him to our GP. She too commented that he looked pale and with a high temperature they decided to send him to Whiston Hospital for blood tests. Later that day, the hospital rang to say bring him in urgently because he was severely anaemic.
After a week in Whiston, the blood tests were inconclusive. He had a very low red cell count (4, instead of the usual 12) and was neutropenic (had no cells to fight infection) so they brought him to Alder Hey to determine why he was still so unwell. The staff here carried out a bone marrow biopsy in theatre which confirmed our greatest fear. My baby had leukaemia. I remember Jeanette White and Dr Mark Caswell explaining the diagnosis on another ward and didn’t bring us to Oncology until they knew for sure so we felt comfortable. Two days after we received the results, Ben began intensive chemotherapy.
The first week of his treatment was hard. He didn’t look like a little boy who had cancer. They needed to prepare his body for what was to come, which involved protecting his kidneys by administering a drug via a drip for many hours. Me and my husband took it in turns to stay at hospital with him as we also needed to look after his older sister who was only 5 at the time and didn’t (and still doesn’t) like coming to the hospital. We were given an appointment card and the staff explained everything to us in detail. For the first 6 weeks of his treatment, the type of leukaemia that he had was still unknown as we were waiting on genetic results.
They started Ben on a high dose of steroids everyday for five whole weeks. The steroids were strengthening his body alongside the chemo, but the downside was that they gave him a huge appetite and totally changed his mobility and personality. He went from an active outgoing little boy to a bloated, emotional, withdrawn and frightened little boy who couldn’t walk and had to shuffle everywhere on his bottom. We had to carry him up and down the stairs. He was out of breath all the time as he was so full with the food who thought he needed to eat and he used to wake up craving food in the middle of the night. Ben’s craving was mushy pea sandwiches!. It was very difficult to see him like this.
As we only live 15minutes away, we were able to be at home on a night time and only stay for treatment. This helped us keep some normality. He would need to stay in overnight sometimes if he had a temperature or was very poorly. We met families on the ward whose child was further on in their treatment. This helped us to understand from a parent’s view and find out how people balanced home life as we also needed to make sure our daughter was looked after.
To start with, Ben’s treatment also included bone marrow biopsies in theatre and lumbar punctures every couple of weeks. The first visit to theatre was very emotional, but after that, it was like we got used to it as we had full trust in the team looking after him. There’s a lady who wears a colourful theatre hat and always carries out the procedures. She’s great as she makes a fuss of Ben and asks about his teddy bear ‘Teddy’ who wears a surgical gown.
About a month into treatment it was decided that Ben needed a central line to help administer the chemotherapy, as his veins were closing down. The children and staff called these ‘Wilburs’, and Ben had a book to explain what would happen when he got ‘Wilbur’. Wilbur has had his head changed 4 times, due to wear and tear but also when he put a badge pin through it!
We found out that Ben had Acute Lymphoblastic Leukaemia and the intensive chemotherapy treatment lasted for six months. He was then able to start school alongside his friends. Apart from not having hair at first, he settled in well and the teachers help check his temperature each day. Due to the intense treatment coming to an end, he was then put on what is known as maintenance treatment from September 2011 and will end in March 2014. This involves daily oral chemo, weekly chemo and 4 weekly steroids, as well a 4 weekly chemo in his line and weekend antibiotics. To start with, Ben took his medicine no problems, but as he grew older, he switched to tablets which he much prefers (apart from the weekend antibiotic medicine, as he likes the taste of that one!)
Cancer wasn’t something I could relate to before it happened to Ben. It happened to strangers or a story I would read in magazines. Once it did come into our lives, it seemed so common. Fantastic friends and family helped us to deal with it and would help by cooking extra meals for us or picking up Chloe from school and because my husband works shifts, my mother in law (a god send!) was always on standby.
As a result of his treatment, all the immunisations that Ben had as a child will be wiped out and he will have to have all of his immunisations again. When his treatment comes to an end in March 2014, we’re hoping we’ll just be back for check ups and to check his bloods.
Alder Hey has great friendly staff and there’s always someone to say hi on the corridor. Even by calling Ben by his name, it makes him feel special. There’s been so many staff involved in his care. The Blood team always have a smile for him and the Play Specialists Pip and Caroline help keep up his spirits by entertaining him with painting and playing games. He loves the nursing team in particular Mary, Paula, Rachel, Susan, Michelle and Ian (Ben’s been coming here for a long time!). I love how in between cleaning the ward, the domestics will always stop to ask us how we’re getting on.
Ben’s also been introduced to the ‘Beads of Courage’ which means every time a child has some form of treatment and visit it adds up towards a bead. This is good to show them what they’ve been through and they should be proud of what they’ve got through. We’re lucky as Ben loves coming to Alder Hey, our only problem is that he has too much fun and then I cannot get him home! The magician, Barrington Powell, has a part to play in this as Ben think he’s bonkers and should be on the ward every day.
Coming to hospital and receiving all this treatment is all Ben has ever remembered so he’s not had to adjust and has never cried about his treatment. He’s been very brave throughout his treatment which will finish just before his 7th birthday in April. He’s already planning to celebrate with a big party for family, friends and the friends he’s made
at Alder Hey.
Melanie, Ben’s mum x
Pip, Play Specialist: “Ben is a polite and well mannered young man. He tolerates his treatment very matter of fact because to him it’s routine, he gets on with it. He says that he likes to see me but I know I’m being used for my cupboard of goodies! It’s a pleasure to help to look after him and he’s an inspiration to new patients.”
Ben “I like it here at Alder Hey because they make me better and they know what I like. Being poorly I miss not being able to go swimming and play rugby but I’m allowed to play football. When I’m better and older I want to be a Policeman just like my dad”.
About the new hospital, Ben thinks that there should be an indoor park with skateboard and scooter ramps in it! He thinks the new hospital will be better than the current one as it will be bigger and better.