Monday, 1 October 2012

Day at hospital

We all headed into hospital early this morning for Jayden's bloods to be taken, Broviac dressing changed and his nasal gastric tube dressing changed. All of which he screamed through. He seems to be less tolerant of it all now and fights harder than ever before to stop the process happening and u can't help but get the feeling he's had enough as well. He's at his wits end with it too and is so over it all he just wants it to stop. We all do but no one more than him.

We are now at the park outside of the hospital waiting for the results of his bloods to come back. We can't leave until then as he may require a blood or platelet transfusion.

On our way out we ran into nick our oncologist. He was too busy to see us today but made an appointment for Friday. We already know what he's going to say as we are not keen on doing round three and he is. It's a terrible place to be as a parent. Not having any medical background what's so ever but having to mAke decisions that are what's best for your child with the knowledge you have. Jayden is on a trial protocol, which means exactly that, it's a trial. I asked nick before we started does that mean Jayden is a 'guinea pig' and he said yes. No one really knows how to cure this type of cancer and all thAt was available was this trial. Nick told us once that Jayden will be a pioneer for kids to come who have this disease, unfortunately that did not bring me any comfort what's so ever. So as we have gone along we have had to make many decisions relating to our child's treatment one of which was to not do the radiation they had to offer in Australia but to do proton beAm therapy elsewhere. best thing we ever did. We now have to decide if another mega therapy round will be worth it and right now we feel there is not enough Evidence or data to support this.

So we ask ourselves as parents, if there isn't enough evidence to support torturing your child for the third time with high dose chemotherapy, run the risk of damaging his vital organs even more so and risk serious infection or death, then should we? Would we?
We are finding it very hard to say yes to that. He's already lost a lot of his hearing because of these rounds and it is estimated he will lose more, what else will he potentially lose? No one can answer that or can they tell us it will make a difference because they actually don't know.

We are now leaving the hospital as the results came back good and he doesn't need any transfusions! Yah. So now we are going home.
Looking forward to getting home and far away from the hospital. Wish we could say we are never going back there again but we know different.

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  1. Dear Leisl, you are wonderful parents and have made great decisions for Jayden. You have put it into words so well once more, the doctors don't know what will work. But you've come so far on this journey to make you as much of an expert in ATRT as anyone with a medical degree and you have your Instinct as a mother! You know what's Best for your son, believe in your decisions as they are ultimately the answer. Love & hugs xox

  2. Leisl, I am so sorry for how heart-broken you are right now. You are so right, the pain of going through this is excruciating and unfair and having to make these decisions is not something any parent should have to face. You are doing the very best you can do for Jayden and whatever decision you make about the last round will be the best for him.
    No one can predict what the future will hold for Jayden but he is a little fighter and you must believe that all will be will for him. I do!
    Big hugs,
    Erica, Gavin's Mum