Wednesday, 17 October 2012

We are done

I'm not sure exactly where to begin today but I can only start from my first thought and that is of the councilling session I had today by a lovely man in Cottesloe. He asked me what I hoped to expect to get from seeing him today and I said I hoped for some clarity in my mind about the decisions we are faced with. In the first half hour I felt a little disappointed as it didn't look like I was going to get that and then we started talking about my fears of the future and my fear of jayden dying. He explained to me that if I could find some place of peace within myself in that happening I may find clarity. When I thought about it i realized he was right. That's not to say he will die tomorrow or the next but an acceptance and peace within myself of that indeed happening gave me a sense of clarity. I believe if I find that then not only is this decision so much clearer but then maybe i will be able to truly enjoy him and be with him in every sense and way possible.
I asked him how do I do that and he told me he can help me and gave me a job to write a list of what that all meant to me.

Danny and I were due back in hospital today to start a whole bunch of tests to get jayden ready for round three. As I sat there in the waiting room I felt numb. Exhausted and a very great sense that I needed to cry.
We went through the motions of the obs which Jayden was happy to do, the dressing change of his broviac that he screamed all the way through and the bloods taken from his lumens. They then gave us the forms to go get the snot test and his X-ray of his lungs.

As we walked out the door we both decided no way were we putting him through another snot test. Upon deciding that we went to do the X-ray. They called us in not long after we arrived, and as soon as we walked in jayden became upset, he's been here before and it wasn't fun. The nurses wanted us to sit him in a chair so that his back was resting on the back so they could X-ray his chest. He screamed his head off, cried for us to stop it and fought like mad. Danny and I looked At each other after trying several times to put him on the chair and our faces said it all. Danny said ' we don't have to do this' and I knew what he meant. Neither of us have the emotional energy or strength to do this anymore. I knew at that point we were done. As hard as it was to accept, this is it. No more. I struggle with it still but I know that neither of us or jayden were up for round three. I'm sad, I can only hope now that I find that inner peace and enjoy my little boy every second of the rest of his life.

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  1. For what its worth, I believe you made the right decision. My son, also named Jayden had at/rt, and our doctors told us that chemotherapy really isn't effective against this type of cancer. However, they also said that children who underwent a tumor resection and radiation have a higher likelihood of survival. My jayden was diagnosed at 7 months, and is now 5 1/2. Don't second doubt your decision, doctors may be smart but nobody knows your child as well as you do. Sending thoughts and prayers.

    Jennifer & Jayden

  2. Leisle , you and Danny have made the right decision for you all. I pray Jayden has a long and happy life, which he will because you are a strong family unit. God bless and I will continue to pray for you all ,jojo.

  3. Leisl,
    You have to listen to your heart and it sounds like your heart is telling you what the right thing to do is. If we could turn back the clock there is no way we would do round 3 again. It is an arbitrary number anyway... on some protocols in England they only do one round, but a very, very intensive one. On other protocols for medulloblastoma, they do 4 rounds.
    I think you have done all you can treatment-wise for Jayden, and now you have to get back to the business of living your lives and enjoying yourselves in the "normal" world. I hope you can all manage to take a holiday sometime soon. Will be keeping Jayden in my thoughts!

  4. I am glad that you both are following what sits right with you in your hearts and minds. You are not making a rash decision but one that is well informed and what you both believe is best for Jayden and your family. It may be different to the protocol, but you, Danny and your family live with the decision and that you all agree is everything. Love and best wishes to you all.

  5. I am so very happy that you are not going to put Jayden or yourselves through,such dreadful pain & suffering.Jayden has had enough.I wish you all such happiness & love.Please watch these stories.
    God bless you all