Childhood Cancer Awareness Month
September already. The weather is mild and the leaves on the trees hint at the possibility of a season yet to change. A gentle breeze, warm on the skin, reminds me of days in Bristol when I was walking up to the charity house in a moment when Ben was either sleeping or had stopped feeling sick long enough for me to sprint the half a mile to do some washing. October 2018 was quite warm, still, I seem to recall. That year seemed to be very warm indeed. Still, I’m writing this on the day before September begins and my thoughts turn to the many children who are facing uncertainty in hospital, with parents and siblings trying to jolly them along, distract them when the funny coloured medicine is being pushed into them by syringe through a line that feeds into their body, then out again at a suitable point to attach these syringes.
I remember the incessant beeping of the machines, the frequent opening and closing of the door to Ben’s room. Nurses, doctors, consultants, dieticians, play therapists, the charity, social workers, family (when we found a brief sense of normality); and Leo and Friends, the woofers who would come for cuddles. Occasionally another parent might peer in to see if we wanted anything from WHSmiths, M&S, or the inevitable and much-frequented Costa.
I remember wearing gloves when wiping up vomit or wee, the smell of the chemotherapy drugs and carrying every bowl or bottle to the sluice to be weighed. That was in Southampton. In Bristol, you put all that in a cupboard, as you were in isolation for transplant and the nursing team would collect it all for you. I lost track of all the names of the medication, but you learned so much, being in a cancer ward. You learned first-hand of the reality of all that children have to face going through cancer, on a ward and all that their siblings have to face, too; this new, frightening normal. You learned of the heartache, got to know parents, however briefly. You became firm friends in the face of this frightful disease. We are the family that knows too many other families who have gone through cancer and we are now in club that no-one ever wants to be in; that of bereavement.
September to me used to be that ‘children going back to school’ time … it is, still, in some ways. We wait for the barrage of photos on Facebook each year now, of which we were part of in years gone by, except now it feels different. It’s the end of the summer. Summer holidays hold different meanings now, because Ben got cancer in the summer. He relapsed in the summer and he died just after his birthday in the summer. For me, I will be reminded of our break in Devon immediately after Ben’s Celebration of Life, or the whispering in the trees in the early Autumn walks in our local woods, when the children would play with their friends at the dens. I think about the build-up to finding an unrelated donor through August by DKMS, when we found out Ben’s acute myeloid leukaemia was high risk, meaning he had a poor prognosis. I remember the overwhelming emotion I felt when we were told at Ben’s work-up for transplant in Bristol, about the fact that the unrelated donor how now ‘officially signed on the dotted line and said yes.’ To think that a stranger was going to step in and donate their stem cells for our son was simply incredible, because it really was a matter of life and death and the waiting for any family is unbearable.
September is also the last time I saw my father before he died in 2017. Our relationship, after he and mum divorced when I was very young, was always distant, though my sister and I always loved him very much. Still do. Whatever the weather, he adored the children and they adored him. He died in the October, on my Nana’s birthday, the year before Ben was diagnosed. His loss affected the children hugely, probably more than even I realised.
September is my wedding anniversary; a time when I think about the day I met my beautiful husband second time round. We dated one summer when we were twenty-one and then met again nine years later in September 2002. My darling hubby is my rock, my ballast. He holds us all together and we’ve gone through an extraordinary set of circumstances together and are still rock solid, I’m grateful to say.
September is the month I first became a mum and my first born, my beautiful eldest came into our lives, into our world and changed it for the better. I was in awe of her and still remain in awe of her and her younger sister. They have been through so, so much and I’m so very proud of them. I’m proud of all three of my bears.
This September, when it comes to Childhood Cancer Awareness Month, I think about the effects of childhood cancer on every family who experiences this unwelcome bully of a disease touching their lives and the fallout of such an experience. I support the messages being put out and share when I can. I want to make a difference. I want Ben’s life to matter. I want my daughters’ lives to matter, the sisters he left behind. This September, I am planning to walk the South Downs Way (100 miles) to help raise awareness of the need for stem cell donors and to raise funds for Ben’s Epic Christmas Boxes and a couple of other book projects that will hopefully one day help families who find themselves dealing with a cancer diagnosis.
Would you know the signs for Leukaemia? Ben had Lyme disease, too and I believe it was Lyme disease that wrecked his immune system long enough to leave cancer the perfect opportunity to infiltrate Ben’s cells with its dreadful life-changing nonsense. There is no proven link between AML and Lyme disease, but it bothers me enough to want to continue to research this.
What can you do in September?
You can help to raise awareness about childhood cancer. About 1,900 children in the UK are diagnosed with a childhood cancer every year and some of those children might need a stem cell transplant as a way to try and save their life. This was the case for Ben when he was diagnosed with acute myeloid leukaemia.
You can make yourselves aware of the signs to look for; fatigue, sleeping in the day, night sweats, bruising, frequent infections, pains in the legs / bones. Ben’s gums actually began to grow down over his teeth at a rate we couldn’t keep up with.
Be vigilant. AML is quick and the bad cells multiply at a ridiculous rate, meaning that things can get very tricky in a matter of a few weeks.
If you have any concerns, go straight to the GP and be persistent.
You can go to www.dkms.org.uk/becauseofben and sign up to be a stem cell donor. It takes a matter of a few minutes to do a cheek swab. Then you send the swabs back to the charity and await your special Lifesaver card.
In 90% of cases, donating stem cells is akin to giving blood. You can find out more on the DKMS website. The plain fact is that there are about 70,000 people across the globe awaiting a transplant at any one time and the more people who are registered, the more chances of hope there is for families waiting.
We didn’t think it was going to happen to us. It did.
Please be bold and go gold for children going through cancer this September.
Thank you.
Walks in the woods …