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The balance of stress is like walking a right rope - across each parents face tells a story. This trip marking 2 years since we heard the words that our son had cancer, and marking 1 year post treatment ...it was different. It brought a different anxiety that was more intense, it made the reality of all we have gone through feel like a bad dream or movie - revisiting the scenes play out in different areas of the hospital. This time I didn't enter it in a fog but saw the pain everywhere.
( I saw this car the night before the MRI and had to take a photo of it since my friends son and Nicky were scanning 24 hours apart and his Mommas name is Virginia but goes by Ginny)
So the LP was canceled due to the inflammation in the spine and the ABR was done as well as an endocrine lab for cortisol. Nickys cortisol level was exactly the same as before radiation so that was great news. The hearing was a bit different but nothing we weren't prepared for. His right is great, his left has more hearing loss but they are uncertain how much because of multiple factors - the piece they place in his ear could not get a good read because of his tube being packed with wax and the right one fell out so we are needing to see our ENT specialist this week and we think we will probably ask him to remove it since at age the ears typically don't need tubes. In September they will do another hearing test but not an ABR since they do not believe is is totally accurate, however it was a good gauge when he was younger. This news was no shock to us, it was all expected from the side effects of the treatment he needed to cure him.
Upon arriving in Detroit the man sitting in front of me turned around and said he was a good boy on the flight. I saw him again at the gate and handed him a Nickybear card and said this is the little guy that was behind you. I saw him sit with his wife while Nick put Nickys stroller up and he walked over to me and told me he just left Louisiana from burying his son, that he had a heart attack and was on life support but not enough oxygen to his brain and he died. I told him how sorry I was to hear that. You just never know the pain of the people around you and I am reminded that it is everywhere, everyone has a sad story... we all experience pain and suffering ... yesterday that same gentleman wrote me from Nickys website, read our story and couldn't imagine what hes gone through in such a short life and wanted me to know that he and his wife have always donated to St Judes and that he will most definitely continue to. We meet people not by chance, but by fate .... the smallest encounters, sometimes are bigger than we could ever imagine, I ask that you pray for the Johnson family as they mourn the loss of their son.
The next day I was so exhausted but I rushed and made my way to Ryan Kennedy's Funeral Service. It was overwhelming, I would guess 700-800 people were there. The Tributes were amazing and it left me heartbroken to watch another child only 10, just gone too soon from the same disease that my son fights .... Please pray for his family. In the midst of this week ... another child from my group that was 8 years cancer free after multiple relapses he was diagnosed with a secondary cancer that is inoperable and aggressive, Glioblastoma .. please pray for Tanner and his parents.
Nicky had his tubes removed from his ears today just another step in letting them heal now .... Our schedule already came and though its not solid yet and things are missing his scan is scheduled for October 3, 2012. So weird to see something feel so far away for once ... I would like to sigh .... but we will be scanning at U of M in 6-8 weeks to confirm that inflammation is gone.
Lastly ....PLEASE really pray for these kids fighting life threatening diseases across the globe.
P.S. Thank you Lord for the great scan results for Ryan D. David P. Megan P. and Seth B. and of course Our Nicky G.....