“Diagnosis Day”

Wow, it is hard to believe 2 years have passed since Nicolas was diagnosed with Ependymoma. It feels like only yesterday we were all gathered at Sick Kids rallying around to support him and his parents and trying to come to terms with this diagnosis. I am so happy to say that Nicolas is now a Happy and Spirited 3.5 year old little boy who can truly melt your heart at first glance.

Nicolas continues to have MRI’s of the head/neck every 3 months to make sure there has not been any re-growth of the tumour. I am happy to report thus far he has had 4 clean MRI’s! I plan to keep a running log just so I can look back and feel encouraged about these positive scans.

MRI Dates
December 2012 – Clean
April 2013 – Clean
September 2013 – Clean
December 2013 – Clean

Of course, there have been a lot of down sides to all the surgeries and treatment. Nicolas has a hearing impairment, he must take Cortisol and Growth Hormone as his pituitary was damaged, dental issues and he is still working with therapist to learn to walk and talk. Despite all of this Nicolas will always welcome you with smiles and giggles and will truly teach you about courage and bravery and to cherish every moment with your kids/loved ones.

We had a wonderful Christmas with family and friends and rung in the New Year with hopes and prayers for continued health for Nicolas and for all of those babies out there fighting this terrible disease. I hope 2014 brings about a CURE!

BY way of update Nicolas will be at Sick Kids today for a day of follow up visits with Neuro Oncology, Endocrinology and Audiology. Coming up in February he will be having another ABR (internal hearing test), he will be undergoing a sleep study to look into all his hormone levels, brain function etc while he sleeps, and he will be starting his Growth Hormone injections. Andrea and Mario continue to act as the most amazing Nurses/Doctors for Nicolas as he still requires an amazing amount of care on a daily basis, but otherwise it is “status quo” with regards to working with him daily on trying to teach him to walk and talk.

Today will certainly be a day of reflection for us all, but I know I will also be praying for all of those babies out there who are still fighting desperately, and will be looking forward towards a bright future for Nicolas.