May 28, 2018

A grandparent's perspective... Please let me introduce you to Thomas, my grandson. Thomas was born in August 2006. He was my second grandson, 2 years younger than his cousin Shaun. The first 3 years of his life were fairly uneventful, just the usual children's ailments, nothing to be concerned about. 

A short time after his 3rd birthday, my daughter began to notice that he was losing weight, and looking quite pale. Then he began to have nosebleeds, which became almost constant. My daughter took him to see  the GP several times, only to be told that it was probably his tonsils or adenoids playing up, nothing to worry about. One one occasion she was told he may have put a crayon up his nose, as young children can often do, and it was lodged there. They referred him to the ENT clinic, but were advised that there was a considerable waiting list.

Meanwhile, his condition continued to deteriorate, and he was admitted  to hospital overnight for observation a couple of times,after having a high fever. Each time he was sent home, with NFA (no further action). My daughter was made to feel that she was a 'nuisance', and an over-fussy mum, but she knew something was wrong. This was to be proven one evening, when Thomas began to cough.. He seemed to be choking, and after a pat on his back, he coughed a lump of what seemed to be mucus of some kind. My daughter took him and the substance to their local A&E department. They checked him over, and sent the material away for analysis. What happened next was about to change our family's life for ever...

The results were in, and the material was found to be a piece of a tumour which had broken off and found it's way into Thomas's windpipe. The tumour was a very aggressive soft tissue cancer called Rhabdomyosarcoma, and there were fewer than 20 children in the UK diagnosed with it each year.

I will never forget the phone call my daughter made to me that day.

I was 200 miles away, but I jumped in the car, and through a haze of tears, I made the 3 hour journey to be with my daughter. My own baby was trying to make sense of what she had been told about her baby. I had to step up and be strong for both of them. A double-whammy if you will.

Being a grandparent is supposed to be the most joyous, uplifting time of your life, and here I was, thrown into this world of chemo, scans, radiotherapy, and (for all we knew) maybe death.

The tumour was so aggressive, that we were told his only shot at survival was Proton Beam Therapy, a type of radiotherapy, which at that time wasn't available in the UK. Within a couple of weeks, myself, my daughter and Thomas were on a plane heading for Jacksonville, Florida USA, for treatment.

I felt so out of my depth, but couldn't let my daughter see how scared I was, she needed me to be strong, and I couldn't let her down. But who supported me? Who could I lean on? I started to look for groups just for grandparents going through this, but there were none. It was then that I decided to start a group of my own. Maybe there were a few grandparents  that I could talk to out there? I created a Facebook support group called 'Grandparents of Kids With Cancer', and posted a link on my page. The rest, as they say, is history! We now have over 500 members, from all over the world, and some of us have actually met in person a couple of times. 

We have members whose grandchild is just beginning their journey, some who sadly didn't make it, and others, like myself, whose grandchild is now off treament and doing ok. But make no mistake - this journey is never over. It doesn't end when chemo is finished and their hair has grown back.

Every cough, every ache and pain, every follow-up scan, fills parents and grandparents alike with fear and dread of the 'R' word - Relapse. 

The 'lucky' ones who survive are plagued with life-long late effects from the treatment.

Being a grandparent IS a wonderful thing, but sometimes we need the support of someone who has walked in our shoes, someone to say 'me too'.

May 01, 2018

Being told that your grandchild has cancer is devastating. Not only is your grandchild going through the most traumatic experience, but your own child is also facing the worst pain imaginable. Talking to other grandparents who are going through the same ordeal can be a life-saver. You realise you are not alone, and you are able to voice your worries and fears in a safe, closed environment.

May 01, 2018

As we become more established, we hope to introduce a network of practical, hands-on support, which will include 'Hospital Buddies'. When a family have to re-locate due to being sent to a hospital in another city, or even another country, we will have a register of grandparents who are situated near that hospital who are willing to meet with them, and maybe offer to show them around, or offer transport to help them buy groceries. 

May 01, 2018

We will also be introducing pop-up information days in different towns and cities, where grandparents can learn about how to spot the first signs and symptoms of childhood cancer, find out about our support group and how we can help.