2008: On March 6th 2008, one day after Stephanie turned 9 years old. Steph had a CT scan – it changed our family life forever! The CT revealed what was thought to be a tumour in the left side of her jaw.
Initially it was thought by our GP that we might be able to have the initial investigative surgery performed in our home town of
We arrived on 10th March, initially we were accommodated in Ronald McDonald House……you see we didn’t initially fit anywhere because it took 5 and a half weeks and 3 operations to get a diagnosis. During that time there was a lot of discussion as to whether this was or wasn’t cancer.
Whatever it was, it was swelling out the side of Stephanie’s face and she was fast loosing the ability to open her mouth at all.
When we arrived here, we used to make jokes about Steph’s postage slot…….which she used to poke small bits of food that she ripped up into her mouth………we soon got to the stage where we were only able to ‘flick’ one cocoa pop into her mouth using one of the paddle pop sticks, that are provided as ‘stirrers’ at the hospital.
In all seriousness, it was of great concern to the Doctors, not for eating, that can easily be taken care of with a naso-gastric tube. However, gaining access to an airway is something Doctors need to know that they have – and we didn’t really have that. Getting tubes down her nose to her airway was difficult, they were worried that they may have to proceed to a tracheotomy.
Eventually, the Doctors decided that Steph’s 3rd surgery would be on an ‘area of concern’ showing up in her scans in her lung. They were operating to take out her thymus gland. Once they got in there they discovered the thymus attached to her lung…….they had to slice it away from the top of her lung. Once her lung was opened they happened to see a tumour sitting in the top part of the lung……..they took the tumour and closed up her lung.
This finally gave us answers!
Not
It dramatically improved the survival rate, which initially they rated at about 30%. From that to about 90%, certainly cause for relief.
Along, with the diagnosis came a need for a change in accommodation. As it happened Childhood Cancer Support had a unit available for us and our 5 kids.
I clearly remember, after my Husband David had picked up the keys and moved our things to the unit at CCS, he took me to the office to introduce me around. After all this time of worry and lack of sleep, it was like being surrounded by ‘cotton wool’. Bill was busy organising a teddy bear for Stephanie and telling us of the kinds of things CCS could do for us.
Was this real? Or did I just want something like this to be true?
Here we are 6 months further down the track…….yes this place is most assuredly real!
It is not just a place to stay, a place to rest your head and cook a meal. It is so much more than accommodation.
The staff and volunteers of Childhood Cancer Support become part of the family. Someone that checks in and cares how the day has gone. Someone to notice your absence, when you’re stuck up at the hospital for days on end.
The other families that we share the facilities with…..become essential to the journey you travel with your child. For us, we’ve watched our kids come to terms with Stephanie’s illness through ‘playground counselling’……..they chat as they climb around the play equipment and through their play they sort out what is happening to their sister. They compare notes, reassure one another. What that does, is brings cancer down to size……if they were at home, continuing with normality of their regular routine…..then Stephanie is the only kid in their ‘sphere’ with cancer. Making it sound insurmountable and really scary…..Mum and Dad and their sister are gone for long absences.
Being around at CCS, they learn that their sibling is not the only one with cancer.
As for the journey that we are accompanying Stephanie on, diagnosis has not been the only shock or hurdle to get around……..like most others, this journey does not follow the ‘plan’. Stephanie and I say that cancer is ‘plan allergic’ – nobody told cancer that it had to conform to a plan.
Today as I write this, we are awaiting a ‘big’ day tomorrow. We find ourselves (again) at the stage where we are having an appointment to go and find out the answers to the scans. These scans are either going to tell us that we are finished chemo and the disease has halted………or it will tell us that the hard yards are in front of us and the battle is on.
That’s the really incredible thing about this journey – there’s no middle of the road…..it’s either really good, or it’s really not.
But we’ve gotten to the stage, that we don’t wait for news wondering if it will be good or bad news. It will just be news. The goal is to walk out of here with Stephanie happy, well and whole – that may be days, weeks or months away. It’s just semantics. Our eye is on the prize and thanks to the support that we have from family (including our CCS family) and friends……….we will get there.
There are not enough words in the dictionary (and believe me I know a lot of them), to describe what kind of help CCS is or the gratitude that we have. But it is with heartfelt thanks that we try and get our point across, whatever way you are involved in CCS, however big or small, you are making a lifetime of difference, you are part of some really awesome journeys – Thank you!
Remember, it’s more than accommodation, counselling and support, you’re part of the family – Welcome!
2010: Update
In February this year our Stephanie, was complaining of headaches everyday……who would have thought that we would have ended up here!
Stephanie is now in remission and is enjoying being at school with all her friends.