September is Childhood Cancer Awareness month. We, a group of parents of St. John’s Ward, Crumlin Hospital, the only paediatric oncology ward in the country, have set up a campaign, Light It Up Gold, to raise awareness, for the 200 children diagnosed in Ireland each year, by lighting up buildings around the country gold and raising much needed funds to finish renovating St John’s Ward.
My daughter Grace was diagnosed with stage 3 Neuroblastoma on September 9 2010, aged 5. After enduring the rigorous treatment of chemotherapy twice, as she has already relapsed, radiotherapy, cis-retinoic acid, losing her hair twice, and all the other anti-sickness drugs that go with it, Grace still has a small tumour on her aorta; the main blood vessel in the body, and because of its location, surgery is not an option.
The doctors in Crumlin are watching it with ultrasound and CT scans and so far it has been behaving itself. We had a bit of a fright in April when it looked millimetres bigger, but in June, it looked the same size. It’s sad to think we breathed a sigh of relief to think she still has a tumour in her tummy, but at least it wasn’t growing.
You’d have to be forgiven for thinking Grace was cured, but we cancer parents all know that’s not a word we ever use. At the very best you could say the child is in remission. But although Grace is off treatment and has a head of thick, curly hair, looks healthy, and goes to school, swimming and all the other things an eight-year old girl does, she still has a small neuroblastoma tumour in her body.
It is very difficult to live this kind of life, not knowing at all what the future holds for your only child, but each day I am just glad I still have her here with me.
Although I haven’t got a fundraiser going for Grace, I am grateful for the help from family and friends, and children’s cancer charities Hand in Hand based here in Galway, and Aoibheann’s Pink Tie in Meath who help all families affected by the horror of childhood cancer.
Please check out Hand in Hand’s Facebook page where you can see Grace take part in a promotional fundraising video or go to www.lightitupgold.ie to support the kids’ cancer ward in Crumlin, or Aoibheann’s Pink Tie on Facebook.