Archive for April, 2013


“N.E.D”

“No Evidence of Disease”!!! Never has there been any sweeter words then these. Nicolas has now had 2 MRIs which were clean, and for this we celebrate, not only Nicolas and his incredible strength and courage, but all the  medical staff who have taken such good care of him.

 

On April 18, 2013 we celebrated  “Ependymoma Awareness Day”. The CERN foundation commemorated this day with a butterfly release at St. Judes in Memphis, TN.  The “Collaborative Ependymoma Research Network” or CERN works diligently to coordinate treatment and clinical trials to ensure the best most up to date treatment for this terrible disease.

 

Through the EpendyParents support network I have met such wonderful people who openly share their stories and help support each family as they fight tirelessly for their children.  One very special lady, Kimberly attended the butterfly release this year and gave a speech about her EpendyAngel son Ryan.  Ryan earned his angel wings May 26, 2012 after a valiant battle with Ependymoma. Kimberly put together a wonderful presentation to honour so many of the Ependy Warriors and Angels and has been good enough to share it with us all.  I hope you take a moment to watch the video in honour of all of those who are fighting this terrible disease, and I want to thank Kimberly for including our sweet Nicolas. It is difficult to see these beautiful babies fighting Cancer, but hopefully it will bring awareness and funds to help find a cure.

http://youtu.be/py7LcVkfZg4

 

 

 

 

Advertisements

Over the past 3 months since my last update, Nicolas has been doing fairly well. He has plumped up a little and we are all enjoying seeing him laugh and play.  Of course daily life is still a challenge for his family seeing as Nicolas has not learned to walk or talk yet. Nicolas was discharged from Boorview where he was receiving daily therapy, to a community based program which has been very slow to get going.  Andrea and Mario have been advocating for him and hopefully he will get back into a more advanced therapy program, but the battle continues.  In the mean time, his parents have become physiotherapist, speech therapist, nurse…..well you get the point!

 

Nicolas is still having some issues with vomiting, sometimes more so than others.  Last week he was taken in to Sick Kids for a few tests to be sure the shunt was working properly. Happily, all those test came back good.  It was a long and stressful day for his parents, but it appears that it just may take his body a little longer to recover from all the trauma he has gone through. The vomiting is just one such symptom.

 

Nicolas had his first post treatment MRI on December 11, 2012 where we got his first “clear” scan.  Well, Thursday April 11, 2013 will be his second MRI where we are all hoping and praying for another “CLEAR” MRI scan. We are all trying to keep our “scanxiety” under control and just send him positive thoughts and prayers for NO CANCER CELLS!

 

image