Reef Carneson's Granny speaks...

This letter was written by Reef Carneson's Granny, Charmeon to her son, Ryan. We're re-posting it with her permission here, because it gives a brief, painfully honest little glimpse of what it's really like to have a child with cancer. It highlights the very reason for Little Fighters' Cancer Trust's existence: no family can walk this path alone. The only way a family can get through Childhood Cancer is with a very strong support network.

Reefie himself would not be alive today if his family had been left to try to muddle through their tragedy on their own! Thousands of people came together to save that little boy's life by helping him get to America for treatment.

Charmeon's letter shows what life is like in an oncology family, even when there is a strong support network. It is also a moving tribute to her son, a father who has had to face parenthood in ways that most parents could never even imagine. Like so many fathers and mothers of children with cancer, Ryan is a silent hero, dedictated to doing whatever it takes to saving the life of his child.

A TRIBUTE TO MY SON

Just thinking back to the beginning of this horrible cancer journey and thinking just how awesome you are and have always been.

How hard it must have been for you to have been expected to be strong, hold everyone together, work, provide, and always have all the answers

I remember you getting the horrible news that your son was very ill while you were at work and having to rush to the hospital all on your own, in shock and not knowing what to expect. Your face as you looked at the doctor in disbelief when she delivered her diagnosis.

Your rushing out in the middle of the night to buy more blankets as all the ones you had, had been puked on. Leaving Pretoria at 5 a.m. to go to work and returning at 7 p.m. with take outs for supper and sleeping in a church building across the road from the hospital in the dead of Winter when the hospital would not allow you to stay with your son anymore.

I clearly remember you promising your little boy that you would never leave him and yet being forced to watch the emergency helicopter fly off with your son who was not expected to make it to ICU. I can still see your face as I look through the ICU glass in the top of the door sitting on a bed all alone, tears streaming down your face after being told you cannot hold your little boy’s hand as they hold him down screaming and bewildered to insert yet another line.

I can still hear the control in your voice as you phone me in the dead of night for the umpteenth time to say “Mom, I think you better come”. I hate that so often you had to scrape me off the floor when I should have been doing this for you.

I remember seeing the hurt in your eyes when you handed your little boy to me while he was fitting so that you could be strong for your wife and organise the never ending emergency packing to once again leave for the hospital. I have no idea how you have managed with little or no sleep for months on end while always remaining optimistic.

I know what it took to have white cells extracted in a gruelling 4 hour procedure when I know that needles have been a fear of yours from a very early age. Rushing with these life saving cells across town to have them irradiated and then back to Pretoria with your precious cargo to infuse into your son.

The week in isolation, watching from the doorway, when you had your little boy lying on a pillow on your lap, swollen beyond recognition and almost lifeless, attached to multiple drips in an effort to keep him alive, too scared to move in case you caused the fragile balance of his life to be altered.

The tender way you cared for him when his Mom was ill or in hospital organising your home with military precision from mixing and giving meds, mouth, eye and skin care, feeding to staying up all night for fear of not being awake when he needed you.

The absolute strength it took for you to hold your tiny little boy down and push the N.G. down his nose, praying that nothing would go wrong.

The day you took your precious little man to Unitas for the unending blood tests only to get a call to say your wife was about to give birth and wanted you there. Your level headedness in organising a police escort and racing across town in record time to see your little girl being delivered.

The terrible time you had being torn between two ICU units, having to choose between a critically ill little boy and a tiny premature little girl as cross infection between ICU units was a dangerous reality.

The strength it took to sell up everything you worked so hard for, leave your home, your family, especially your brothers and fly off with two babies to a strange Country with just the thought of better care for your boy in mind.

Accepting that you cannot work to support your family when I know how hard this is for you and still believing in your little man’s miracle.

I cannot forget the hurt in your eyes when just recently I witnessed your sweet little boy when saw some children playing and unable to speak, tapped you on the shoulder while in your strong and protective arms, pointed to himself and then to the children playing a floor below. I know that in that instant you would have given anything to change the way things were.

I thank God for your incredible faith, determination and positivity when lesser men would have been crushed by what you have had to face for such a long time now.

I am so very proud to be your Mom.

Love you Ryan.