Someone told me that the most commonly experienced side effect of cancer is living with the fear that it might come back. No one should have to live with this fear especially a child. To know that your child lives with that thought is heart breaking. I want to take it away and to make others understand that there is a real crippling anxiety that can occur and go unnoticed to most people. I know Ive said it before but Joey is my hero. He fights so hard and he keeps so much to himself. You can ask Joey how hes doing and 99% of the time he will smile and say fine but after some thorough questioning from the doctors yesterday and after having some time to let it all sink in….he really is struggling inside. He wants so much to be back to who he was before his cancer. He wants to deny and fight changes in him physically and mentally. He will be the first one to tell you that God has helped him with the cancer and he knows how blessed he is that things didnt turn out as bad as they could have, but he is fighting things he doesnt understand and doesnt want to acknowledge. He was relieved when the doctors expressed the need for Joey to talk to someone that knows and really understands what he is feeling and going through. Even though we may not always like we hear from the doctors there is a comfort in knowing they deal with children like Joey every day…they understand and they truly care and want to do all they can to help. I am always so impressed with the doctors at Childrens. His appointments may take almost 3 hours but in that time he sees a group of doctors and nurses that make up a brain tumor team and they all see him individually and then share their thoughts and together make decisions. The very first time we had one of these appointments I actually got a little impatient because it seemed like each doctor came in and did close to the same exam and asked almost the same questions and gave a lot of the same advise. But after several times, I love the fact that when you leave you feel that you received the best care and that you know they all working together and that the best decision are being made. They stressed over and over to Joey that it is ok to ask for help and he needs to stop setting such high standards for himself, to try not to compare himself others and realize that he has truly been through a lot and he needs to give himself credit and quit being so hard on himself. Sorry for the long post. Just felt good to get this out. And as always I want to thank all of you for always keeping us in your prayers. That is the most powerful thing we can ask for.
Posted on: Thu, 20 Nov 2014 17:26:02 +0000
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