Friday, 3 August 2012

another day at PMH

We spent most of yesterday at PMH again as Jayden had a number of appointments.  We first went to Ward 3B in the morning where Jayden had to have a heap of swabs taken from just about every orifice and then to pathology for bloods to be taken. Poor little bugger has been poked and prodded so many times its just so bloody wrong its horrible. He burst into tears as soon as he laid eyes on the lady who was to take his blood as he recognised her from before when we were here last and knew exactly what she was going to do to him.  It was and always is awful to witness and absolutely never gets easy. Oh to just have to worry about an immunisation shot every so many years.  We then had to go to another area of the hospital for a swab to be taken from the back of the inside of his nose. A long tube was inserted in his nostril far enough to make him gag and a swab taken.  Fortunately it was quick but none the less traumatic for a two year old. Shit of a day out for him, "where's the park?" is what hes probably thinking or certainly wishing we were at instead.

After all that we returned to 3B, as we had a review appointment with Dr nick where he sat us down and gave us the run down of the treatment to come. "Its no picnic" he began. "no shit" I thought, when has any of this been a bloody picnic. Absolute hell is what I would call it, not a damn picnic.  He informed us of the side effects, the nasty shit that will happen to him and the risks involved. None of which are nice, none of which I want to subject my son too and none of which I have a bloody choice. I truly hate this beyond words.

Jayden starts this nightmare again this Thursday. We thought its wasn't until Monday 13th but Nick told us he wanted to "crack on" with his treatment and start Thursday. Jayden will be in over night on Monday to get his Broviac inserted then home Tuesday but back again Wednesday to get pumped full of fluids ready for Thursdays first injection of vial chemotherapy. We are in for a long hall of vomiting, skin peeling as the Chemotherapy this time comes out in his sweat and is so toxic it burns the layers of skin off, and mucositis  that gets so bad they suspect he will be on morphine for some time. We could be really lucky and he sail through but the odds are against us as no one sails through this type of intensive chemo. Theres risk of liver damage that in worse case scenario is fatal, hearing loss, bleeding, infections, the list goes on. We were told he most certainly would get a temperature and some sort of infection as this type of therapy brings his counts so low its beyond scary.Its all shit.

Layla and Luke had to be picked up by their uncle from school as we didn't arrive home until late in the arvo. They are use to this now and at least this time are a little more prepared for things to come.
I don't think any of us can be as prepared as we would like to be but how can you prepare yourself for this nightmare. Really, there is no way of knowing what is going to happen or how any of us will cope.

Its 8.00am on saturday and we have been up since 3.30 am, looking forward to having a normal wake up time, what ever that is.
Jayden is happy, playing with his siblings and it crushes me to know that soon that will dramatically change. He has no idea, maybe thats a good thing, he doesnt have to worry at this moment like I am. he doesnt have to be scared at this moment and he can enjoy it for what it is.I wish i could. But I know whats to come and what i dont know scares the shit out of me, because we have no idea, really, of how bad it will be, or if he will even survive. I havent lost him yet but sometimes I feel like I have, I grieve when he hasnt even gone but the very thought of it burns at my chest and pains me to no end. Im so very scared for him and for all of us. I dont know how he will cope, but Im hoping with all my heart that he soldiers on through this like he has before.  


  1. Leisl, keep going strong. Your beautiful boy is in our pryers every night. We think of you often and know how hard it is. Keep believing in yourself.

  2. I know most of us will never walk in your shoes. But I hope it gives you some strength to brave another day, knowing that you and Jayden are thought of constantly, And if there is a god out there, that he keeps Jayden strong to fight what is ahead of him. Love to you all. x

  3. Beautiful little man,he just keeps on smiling. I think of you all every day. Leisl you have touched so many people, you and your family are amazing .

  4. Leisl you have an inner strength that is unsurpassed. Reading your entries it is clear that inside you feel broken, your heart is aching, and yet your stoic courage for little Jayden is unwavering. My heart aches for you from one mother to another. I wish you strength and love and pray that God takes this insidious predator away from Jayden and he will be well again.