Wednesday, 14 November 2012


Back at PMH in radiology waiting room waiting for Jayden to be called for his MRI. Fasting sux for a two year old and we have to wait another two hours in a waiting room that doesn't stock toys. Fortunately we have done this enough to know that and stocked up on entertainment in the back of the pram. However he still asks to go home or to go to the car. I wish. I think everyone in this waiting room wishes they were in the comfort of their own home and not stuck in here waiting. Would be so nice.
But we are not.
All things considered hes amazing. He's hungry but playing. Doesn't want to be here but makes the most of it anyway and still manages to smile.

He's now in getting scanned. It was a really tough couple of hours especially after some idiot sat in the waiting room drinking a chocolate milk and eating! Loads of signs everywhere to say not to because the waiting room is FULL of fasting kids. Honestly it made me so cross i wanted to scream. So of course once Jayden saw that he went bananas for something to drink and eat. It was awful and was really difficult to distract him for the next two hours. We had to take him into another room to calm him down and even that didn't last long.
Its these moments that really test you when you are already living your life walking a very thin tightrope of sanity. One slight hiccup and off you go into the depths of crazy land and you just want to scream or cry very loudly. It's so hard for me now to cope with stressful situations without wanting to curl up in a ball and cry about how damn unfair this is. But I don't. I managed to keep my cool with the nurse who told us it would be another half an hour while my son screamed in my arms. I cried, but I kept my cool. I so wanted to yell at her but I knew it wasn't her fault but sometimes you just wish you could blame someone, anyone for this shit situation. I didn't. I sat in the MRI waiting room and just cried instead. Being back in this hospital for any reason stirs emotions in me that I spend all day and night keeping at bay, I hate it.
Soon after the anaesthetist came to speak with us about how she would put him asleep as he no longer has the convenient Broviac. She told us if she couldn't find a vein they would use the gas mask which frightens him terribly. They didn't find a vein, he had the mask and it was awful, he was very scared. Fortunately it was quick even though it felt like it took forever.

Now we are waiting in the friendship room for someone to tell us he's ok, it all went well and he's now in recovery.
More waiting. I now wish I never complained about sitting in a doctors surgery to get a prescription because I wish that's what I was doing now and not waiting to find out if my sons deadly brain tumour has grown back or not. Oh for that life.
What I wouldn't give to be whinging about that!

There's other parents sitting in here and I wonder what they are thinking. No doubt something along the same lines.

A volunteer just came and got us and we are now sitting in the waiting room of radiology. One step at a time. We now have to wait till he wakes before we can see him. Crazy really? Why can't I sit by his side and be the first face he sees when he wakes? I'm sure there's a good explanation medical wise but as his mum no explanation is good enough to keep me from him. However that's the way it is. I'm just glad it's over and we are one step closer to going home..

He's with me, it's a few hours later and we are home.
We spoke to Nick just before we left and apparently Jayden has something known as radiation neurosis. There is areas around the part of his brain that was radiated that show damAge. This wasn't there five weeks ago. He's pretty sure it's not tumour but the full report needs to be seen tomorrow and he wants another expert to look at it. He's also sending the pictures to Dr Chang in chicago and ask him what he thinks as he personally has not seen a lot of it here.
What does this all mean? Well essentially as I understand it, its cells damaged from the radiation that could potentially get worse and cAn show up after 6 months after the radiation.
What Nick has told us is we have to watch him closely in the coming days and weeks and if he shows any signs of neurological problems we get him seen immediately and treated.
You just can't get through all this unscathed. You put a small body through the ringer and something's gotta give.
This nightmare truly never ends.
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1 comment:

  1. Leisl I hope that you get your questions answered sooner than later, and more than anything I hope that it is good news. Out here thinking and praying for you, your family and brave beautiful Jayden xxx