“You have cancer”. Can you imagine sitting in a surgery and hearing that?
Now imagine sitting there with your husband or partner and hearing “Your son/daughter has cancer”.
Imagine the next scene, if your child is old enough, you must sit there and support your son or daughter, as they hear for the very first time that they have cancer.
I have looked on in the past year and watched as a bystander, close friends live this nightmare.
After being told the news their then twelve year old boy had leukemia, shell shocked and raw, they were referred to Crumlin Hospital within twenty four hours.
Here in Ireland every week, there are families reeling, as they take their child by the hand, or hold them close, and enter Crumlin hospital. They walk together, that most dreaded of walks, to St Johns Ward, Oncology. Every step takes them nearer a world they cannot even imagine, and further from the life they had taken for granted.
Once they enter this new world, even if they have a successful outcome, life can never be the same again.
We, who look on from afar, may at times ponder how hard it must be. However we can never really know. We can never imagine how many painful decisions and difficult days those families face.
The other day on the facebook page of my favourite charity Aoibheanns Pink Tie I read this post by a mother of a two year old boy,
“I can barely look at him today. He is so smiley. And when he smiles up at me I hate the fact that I am going to take him to a hospital and hand him over to a surgeon to have his lower leg amputated. I want to tell him not to smile at me. That I am the last person he should be smiling at”.
On reading this I wondered how you can survive as parents such a nightmare.
It is at this point I want to speak of the purpose of this post, the promotion in Ireland of the amazing work of Aoibheanns pink tie, and to those who read who are not living here, I know there must be similar charities where you live.
I asked the question “how do parents survive?”, and in doing so I remember hearing a consultant saying “There are three reactions to a childs diagnosis of cancer. A small minority struggle to come to terms with it ever. Others either embrace life like never before, or fundraise”.
I first met the beautiful inspiration for Aoibheanns Pink Tie, at her removal. She was just eight years old and so very pretty. I had become friendly with her aunt, Caitriona. As I came to pay my respects, I recall her mother glued to her coffin, and her father’s gratitude that I called by. I also recall the child friendly atmosphere and the giant bouncy castle in the garden, which was ordered to amuse the many children who would call. I remember thinking “These are exceptional people”. How right I was.
Not too long after losing Aoibheann her grieving father burst into action. He remembered so well the hardships of daily life when you have a child with cancer. The time spent in hospital, time away from work, petrol money, appointments, and accommodation for the other children in the family.
So he began to fundraise. He wanted to be able to offer practical help to families who were living this nightmare. Maybe petrol money, or help with a mortgage. Maybe a family trip away? There were endless possibilities.
One of my favourite things they have done is fundraise to buy dry suits for the children on St Johns who have hickman lines.
A hickman line (freddy) is a tube through which they get their chemo. It limits the amount of needles they need but it means no swimming. For a child facing more than two years of treatment, that is a huge blow. I remember when Dan heard that it was a major blow. He and his family could not imagine a summer in which you could not swim.
By giving these children dry suits, you do not make them better, but you do make them “normal”.
Dan would have loved a dry suit.
So to all of you Irish bloggers I just wanted to give a big shout out to Aoibheanns pink tie. It is a permanent reminder of a beautiful little girl, but it is also a whole lot more.
Now that you have heard about this amazing charity, if ever you see them collecting or hear about them you might consider giving them a few euro. They really do an amazing job. To all of you who read this you might also consider “liking” them on facebook, they’re looking to make it to 14,000 this weekend.
To all who give their time to APT I salute you. Dan never got the chance to make use of what you do, but I know many are so very grateful to you.
And to Jimmy Norman. I have no doubt your little princess is immensely proud of you. Your loss is unimaginable but you are really making a difference, and I and so many others just want to say “Thank You for doing all you do”.
**** If you wish to read any posts on Dans journey click on the bone marrow link at the top of the page.