Friday, 5 October 2012

Meeting with nick

We went into hospital today to have our meeting with nick. Jayden was with us as we thought he needed to get his blood counts done but he didn't, but it was good to take him when he wasn't getting something done and no doubt he was happy about that.
Nick said exactly what we expected him to say and more, and left us feeling conflicted somewhat. I know I'm not sure what to do next but danny is still where he was when we first went in. I asked him what his main reasons were to not do another round and he said he didn't think Jayden was up for it and neither is our family. Nicks argument was he's done ok so far so why wouldn't you do another? Obviously a lot more was said than that but what danny said really stuck in my mind. Jayden has had enough and we have too. Our whole family is at the brink of emotional exhaustion from all of this and none of us are truly up for going back. It was hard enough to do round two let alone go in for three. But what continues to play in my mind is nick saying 'will you live to regret that decision should the tumour come back?' However he can't tell me it would be because We didn't do round three because no one knows that. But I can't help but think, would i? But then I think, is that just because I'm so scared of facing the future? That by being in hospital I don't have to look down that path for a while because i will feel as if I'm doing something now? Because right now I am so very scared of tomorrow and the next day and the day after that and the very real possibility that one of those days i will be holding my son for the very last time. I'm at that point now that I don't know what I am going to do to get through this. When we were doing treatment I was busy focused on a goal and that was to get to the end of it. Now I'm here and what next? Waiting? Everyday, wondering, watching, dreading, that it will return. The anxiety and sheer terror of it is so overwhelming that I don't know what I do next. How do I get through this? How do i go through each day?
I sat with my sister tonight and cried. I don't know what else to do and I know that right now that's all that I want to do. I spend all day holding it in but all day all I want to do is cry and cry and cry. I really don't know how I am meant to do this? How does a mother function on a day today basis knowing that one day this dreadful tumour may return and when it does there is nothing more that can be done as Nick told us today. He also reminded us that these tumours if they return, return quickly usually within six to twelve months. So every day from here on in i will be watching for every little sign and worrying senseless that i see one and that his tumour has come back. Its insane. i feel like I'm going crazy sometimes because these emotions are so intense i don't know what to do with them.
I'm truly at a loss. A loss for words powerful enough to truly explain how hard this is and a very real loss at what to do next.

Jayden is asleep next to me right now and looking so peaceful, my only solace in this awful scenario is that he doesn't know what lies ahead of him. He only knows what's in today and that he's comfortable in bed between us and happy sleeping. He's had a fabulous day playing with his auntie and cousins and life is good, as far as he sees it.

How i wish it was exactly how he sees it....

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  1. Dear Leisl, what a cruel place for all of you to be in, it just doesn't get any easier for you, which is so unfair. None of us out here would have anything close to an idea of what you are all going through unless they too have had to meet this terrible disease. You will as a beautiful mother and loving wife choose what is best for Jayden and your family, with the knowledge that you have been given. I wish it was easier for you, I wish the doctors could give you more definate answers to help you make you choices. I am praying and thinking of you and Jayden all the time. Stay strong Jayden, you are so loved Xx

  2. Lesli I wAs in the same boat as you. My son had a bad infection with high dose number two and I said I am done he is done we are not doing number three. The dr. Said to me why wouldn't you do number three? We can get him through 99 percent of all infections but to treat a relapse is harder. Connor had mersa, c-diff, and cellulitis from round two. I know how you feel and unfortunately it doesn't get easier. I live everyday in fear that his tumor will return and as his scans approach I get worse because this can be the day our world changes again. I had a nurse at the hospital tell me that you can't change the future so don't let it consume you know to enjoy every good day you have with your son. It is so true although not easy. I have became very good at keeping my fear internalized because I was making everyone nuts. I snuggle next to home every night because one day he will be to big. I want you to know if this does come back it is not over there is something you can do you can't give up. Dr. Goldman in Chicago would see you and give you a second opinion. I have learned to live in three month intervals. Connors next scan is December so I don't make any long term plans. We get through december and I will plan for three more months. Enjoy The good days and trust me it is very hard to do the fear is always there. Connor will be 1 year out of treatment in December and I am still scarred and unless you have gone through it no one knows how you feel.