Monday, 3 September 2012

Kidney and hearing test

I'm laying In bed squished up at the very edge of the mattress just about falling off thanks to my wee little man that seems to be able to take up the entire space of a bed.
Yes, they are all asleep, but not me. One day I hope I will go to bed, not worry about anything and sleep. However I don't think that day will come anytime soon.

Today we were up bright and early and Jayden and i went to PMH for his scheduled GFR kidney test and his hearing test.
We got there on time, and were led into a treatment room for jayden to have a line inserted into his vein so they could push the radioactive stuff into it then draw blood from his central line every hour for four hours. This process can then determine how well the kidneys are functioning.

All abit scary in itself really as the stuff they inject into him comes in a metal syringe so it cant come into contact with Anyone yet it's going into my sons veins.
But that I have to say was not the worst thing I witnessed today.

When we went into the treatment room the doctor inserting the line just didn't get it first go, I truly hate that. Yes, I understand they can't be perfect but when they insert a needle into my two year olds arm and spend Ages moving it around under his skin trying to pierce a vein with him screaming at the top of his lungs, anurse and myself holding him down, well, it's just bullshit. I was so disturbed by the whole process that I had to ask her to stop. I thought I was going to pass out, and not from the needle but from witnessing the sheer stress in my sons face and hearing his screams. It was truly torture. She went for it the second time and I wish I had of said no, for again it went on for ages and when I said "oh my god" out loud she knew I had had enough. Why did I allow this person to do this to my son?? I ask myself that many times. I have a voice, why didn't I use it and demand it done buy someone more experienced in that area? Or even more compassionate would have been better. at one point she told me "He would only feel it as it's going in he just doesn't like being held down?" Really? Honestly, if that was me and that was happening I would be hurting and completely stressed and truly, isn't that bad enough?
Poor little mite was so traumatized by the whole process that when they sent us upstairs to get it done by the guys in nuclear medicine he was really and truly scared and very upset. They strapped him to the bed to keep him from moving and that wouldn't hAve bothered him too much but when they took his arm he went nuts, screaming at me "cuddle mummy, cuddle mummy". Because he knew what was coming. Oh my god, what he endures is nothing short of a nightmare. It truly is no wonder he wakes up often In The night x screaming "no!no!"

Don't get me wrong he's had plenty of these lines put in and 90% are done so quickly and efficiently it's over really quick. Still awful, but quick.
But when it's not like that, oh my goodness it is just too much to bare. Someone so young and has absolutely no understanding of why? Its just heartbreaking. Really and truly it is.

At nuclear medicine the doctor there took his time, and I didn't care if he took all day finding the vein, as long as he didn't go searching for it when the needle was in There. And he didn't. He took his time, found it, put the needle in, done, over. Brilliant. Jayden was in my arms for that cuddle in no time after and my word, did I not want to let him
go. God I love him so much.

We then headed off to hiS hearing test and yet another not nice experience. Was fine for him as he got to sit on my lap and listen to sounds and when he heard on he turns his head towards it and Bobthe builder would light up in a box or Dorothy the dinosaur. Thinking that Mater would have got a better response but never mind.
There is so many things that bring me to tears in this whole process and this was no different. Sitting in the sound proof room with him on my lap and hearing the sounds but realizing jayden wasn't, was truly awful. His little face didn't turn to where they were coming
from and it appears he has lost some more of his hearing. He hasn't lost it all but high pitched sounds have completely gone more than before. I hate chemo, and cancer. It all truly sux. I so don't want to do this next cycle or the next one after that.

after the hearing test, all the bloods were taken and his dressing was changed on his broviac and we were them able to go home and make it home in time for the kids to finish school.

Jayden had fallen asleep in the car on the wAy home as he was so exhausted from the days events.

He's due to start chemo on thursday but I'm really worried as his counts are still dropping and he's no wAy near in good as shape as before. I spoke to the nurse and apparently that's fine. I call that scarey, not fine. Very very nervous.

I may have witnessed one of the many worse moments in my life today but Tonight I witnessed one of the most beautiful. Jayden and Luke went into the bathroom to clean their teeth and I usually help jayden but Luke Was so worried about the state of jaydens teeth as they are very yellow from the chemo that he insisted he do it for him. Jayden, whom normally kicks up a HUGE fuss when I do it diligently stood there with his mouth open while his six year old brother gave them a good clean, with a running commentary while he was doing it. Making sure jayden was listening to his every word, which of course he was. Beautiful. Truly beautiful. He brother loves him so much, as do we all.


  1. So, so precious. It's moments like this that make It possible to survive the days like this.

  2. Bless you and your family. May you all have the strength to smile as the sun goes down and the stars shine. Faith in yourselves and your love will bring you the courage to keep tomorrow a promising day. You guys are in my thought. Lisa from Butler. (wife and mum of 2 boys)

  3. I am reading this post late. Thank you again for letting us know where Jayden and you are in fighting this awfull cancer.This post was so sad with the pain and anguish that you both had to endure today.But, so special the end of your day with Luke and Jayden having a absolutely beautiful moment that they owned together xx