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This photo was taken at the Grizzlies House playground when we first arrived to Jude ...
May30Jude4Back to Grizzlies ....In the last few days I have been trying to compile my thoughts and feelings about this week.... Nicky was great and slept through our flights. Upon arriving by shuttle to St. Judes there was another family on our shuttle bus just arriving. A teenager that was so thin and frail covered in a blanket. The shuttle stopped at the hospital and the man driving asked if he needed a wheelchair and the boy nodded his head. Upon crawling out of the first row I noticed a puke bag in the bald teens hands that he was clenching it as he was trying to get into the wheel chair and his mother trying to shuffle all their things and small bags. I turned my head away and let the tears roll quietly down my face, a truthful reminder that we were in fact at St. Judes.


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.

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This is a photo of Nicky before the MRI, this was the first time they didn't have our normal Tiger gown and pants and gave us the girlie peace stars and hearts...
As I told you Nickys MRI was clear - no cancer. But our week didn't end with a sigh and exhale and let's go home.  Our doctor called 10 minutes after my post and told me that the neurosurgeon looked at the scan and agreed that we shouldn't wait until our next scan and asked us to re-scan his spine in 6-8 weeks to see if the inflammation is gone, improving or gotten worse. If its gotten worse she threw more technical medical terms around and a possible surgery as if it was casual conversation. Upon reading the final report of his scan, I completely understand why they are being overly cautious, but its at our expense and even the radiologist noted that in a clinic setting these observations may be pretty much nothing. For some reason the children on this protocol pick up contrast in the kidneys, we did an ultrasound for that last time that was uneventful, again overly precautions for our team to schedule it, but we did it. Sometimes I can't tell if the tests are needed or just added stress ....either way no fun.

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( 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)

The mother I am researched for 10 hours and sent our primary Doc so many questions she has yet to fully reply but told me she would when she had more time. I'm not a simple parent, nothing is simple with my questions. Nicky then had his hearing testing ABR. while sedated I went to pick up his MRI CDs and I met a mother in radiology, her daughter was first diagnosed with ependymoma at 9 months old and was back being treated for her third relapse, its just devastating meeting these children that don't just fight cancer, win and go home ... but repeatedly this is their lives.

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May30Jude2So 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.....

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