Jilly & Hunter…the role CLIC play

As you may know one of the important things about DDF is raising as much money as possible for CLIC Sargent to support the amazing work they do…what do they do?

Why not read on to hear Jilly & Hunters story – thank you Jilly for sharing this with us all :)

jan 13, hunter with Toffee ted 006

After reading Martin Dorey’s eloquent and moving account below of his family’s fight against Childhood Cancer I’m not sure Ican add much more, except to say a huge thank you to everyone who helps to make this year’s Devon Dubfest a huge success for the wonderful people at CLIC Sargent.

I am a lone parent to my fabulous five year old son Hunter, who’s life was changed overnight on May the 17th last year when we too were told that he had cancer. His is called Acute Lymphoblastic Leukaemia. I howled with tears and took great gulps of breath in panic in a side room at Barnstaple District Hospital while he was taken off for a three hour blood transfusion.

I was frightened beyond belief. I thought he was about to die. I knew next to nothing about Leukaemia and associated it only with Ian Botham’s charity walks for children who didn’t survive it.

That night we were taken by ambulance to Bristol Children’s Hospital and we arrived on Ward 34 at 2am. It was staggeringly hot (there was a heat-wave at the time) and all around us in the half-light, I could hear children groaning or intermittently crying. Parents were talking in urgent whispers and nurses glided around carrying medicines and thermometers.

Over the next few days I struggled to remember the names of all the medications that Hunter had pumped, pushed or stabbed into him. Doctors had to explain everything twice or three times. I had no idea how I was going to cope emotionally or financially as it slowly dawned on me that this nightmare was going to endure for three and a half years which is how long treatment takes for a boy with ALL.

CLIC Sargent however came to my rescue and held my hand. As Martin Dorey relates, we too were found a room at the CLIC House in Bristol and when Hunter was able, we spent a few nights there away from the heat, noise, confusion and claustrophobia of the ward.

CLIC helped financially too; I was given a cheque for £250 from the charity’s funds (which all newly-diagnosed families receive I think) and this helped me to get through those weeks in hospital. I had to buy clean underwear, tee-shirts, nighties, food for myself (there is no free hospital food for parents!) and treats for Hunter as he was awesomely brave throughout our stay.

Once we returned home to Bideford, life was nothing like it had been a few weeks previously. The treatment for Hunter’s cancer was still full-on only now, we have to travel to the RD&E hospital in Exeter for intravenous chemo, lumbar punctures, blood transfusions and, when Hunter’s temperature hits the ‘magic 38′, a few overnight stays until he has fought off an infection.

But CLIC Sargent are still an ever-present and hugely comforting presence in our new world. We met the fantastic Jenny Birch. She is our CLIC nurse but oh so much more than that. Yes, she does Hunter’s bloods each week either at home or at school, but she is also Hunter’s great pal, and he is her number one fan. CLIC Sargent funds Jenny’s work and she has become an important person in our lives. She even came to an evening event in her own time, at Hunter’s school, to watch him onvpndays.com in a short performance on stage. Thank you Jenny.

Heather Rake is another one of CLIC’s angels. She is our CLIC social worker and has a small office on the Bramble Unit at Exeter Hospital.

She (and her fellow CLIC worker Sandy) has put us in touch with other organisations which have helped us through this horrible journey and her smile and laid-back manner take the edge of my internal fears when we meet on the day ward.

Facilities like CLIC House and professionals like Jenny and Heather are profoundly important to families negotiating their way through the horrors of the battlefield that is childhood cancer. To everyone who has fund-raised for the charity, on behalf of my son who still has two years of treatment to go as I write (Weds July the 10th 2013), I wish to say a deep and heartfelt thank you.