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It is hard to believe it has now been 4 years since Nicolas was diagnosed with Ependymoma! He has come a long way in those four years. Nicolas is 5 1/2 years old and is in senior kindergarten, and loving every minute of it. 

Since my last post we have celebrated Christmas and welcomed in 2016! Nicolas was treated to a very special day (along with his sister Sofia), on the “Dreams Take Flight” adventure to fly to the North Pole. It was an amazing and memorable experience for them. 

As far as his progress, Nicolas continues with therapy and is really working hard and progressing with his speech. Nicolas is having a sleep study next week, and is scheduled for his second eye surgery (to correct damage caused by his treatment). We don’t have the MRI date yet, but it will be in March.

Nicolas also qualifies for the “Make a wish” trip so he and his family will be going to Disney World soon. I am so happy they will get this opportunity as they all really deserve it!

Today I choose to celebrate the amazing little miracle we know as Nicolas! I hope you all had a wonderful holiday season, and I wish you all great health in 2016.

Here are a few pictures from Christmas.

   
    
    
 

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MRI #9 – September 29, 2015

I really have been slow to update this blog, but all for good reasons. Health, fun and adventure over the last nine months. I am happy to report hat Nicolas continues to do well, growing, advancing and having a great time! Nicolas started SK at Aurora Grove PS this fall and is a happy little guy. He is learning to communicate and continues to work hard in therapy to work all his muscles.

Nicolas’ summer was full of cottage fun, swimming, playing, his 5th birthday and a much needed family trip to Mexico!

Nicolas continues to scan every 3 months…this week he will undergo MRI#9 on September 29th  and we just know he will continue to kick cancer’s butt! Here are some updated pictures for you:


   

  

  

 

MRI Scans:
9. September 29, 2015

8. May 29, 2015 NED

7. January 21, 2015 NED

6. August 2014 NED

5. April 2014 NED

4. December 2013 NED

3. September 2013 NED

2. April 2013 NED

1. December 2012 NED

MRI#6 – Aug.27. 2014

Even with the passage of time, awaiting these MRI results weigh heavily on our minds. Nicolas will be heading down to Sick Kids tomorrow, Wednesday August 27th for his 6th post treatment Brain MRI. I ask that you all send him prayers and well wishes for a clean scan or “No Evidence of Disease, NED”.

Since the last update Nicolas has turned 4 years old (July 26th) and is now 2.5 years post Ependymoma diagnosis. He is such an amazingly strong little boy who continues to show strength and determination in continuing to recover from his treatment. Nicolas has made great strides in learning to walk and can walk short distances between people or furniture and is improving every day.

There will be another large milestone for Nicolas next week, he will be starting Junior Kindergarten!!! That’s right, he will be joining his sister Sofia at Aurora Grove public school in September. Given his limitation he will have an aid with him and will only be attending for half days (mornings), however this is a huge step for him and his family. I am very optimistic that Nicolas will thrive in this new environment and will be encouraged to continue to learn to walk and talk. Nicolas will continue with his therapy programs in the afternoons along with attending his never ending amounts of doctors appointments.

I thank you all for your continued support, prayers and ask that you continue to help us raise awareness for Childhood Cancer, and specifically Brain Tumour Awareness.

MRI Scans:
6. August 2014
5. April 2014 NED
4. December 2013 NED
3. September 2013 NED
2. April 2013 NED
1. December 2012 NED

 

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MRI – April 30, 2014

It’s that time again…time to scan and get confirmation that Nicolas is “NED” or “No Evidence of Disease”.  I’m not sure it will ever get easier but there is no reason to think otherwise. Nicolas is a happy, energetic 3 1/2 year old who is curious, expressive and yes, sometimes a little mischievous 😉

 

Nicolas continues with daily therapy and although is not walking, if you give him his walker toy he will move like crazy!  He also started growth hormone injections which Drs. Mom & Dad get to give him every day so we are hopeful we will start to see him grow. Despite the fact that the de la Fuente house looks like a medical clinic with all the equipment and meds, Nicolas really looks great. Nicolas still loves Elmo…he actually goes nuts if he has to go too long without watching it. He loves iPads, iPhones and knows how to go onto YouTube and find videos of Elmo lol! You will see in the fourth picture below he has stolen an iPhone and is trying to escape with it 😀

We also welcomed a new addition to the family on March 18th with the birth of baby Peter! Congrats to Doug and Sylvia! It has been very nice to see the family growing and now Nicolas is finally a big cousin. We spent a nice weekend together for Easter and the cousins had fun playing and eating lots of chocolates. Here are a few pictures to see Nicolas and his beautiful dark curly hair that he now has and ask that you all send positive thoughts and prayers to Nicolas tomorrow for his MRI.

 

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“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.

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Sofia and Nicolas

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I am delighted to report that Nicolas’ MRI showed “No Evidence of Disease”! We usually find out within hours of the MRI but this time we had to wait all weekend and half of Monday, but it was all worth it to get this fantastic news.

Nicolas also had successful dental surgery. They ended up only pulling one tooth and doing some pretty creative root canals to fix the others. The talent these doctors have to treat these tiny patients is noting short of amazing.

It is hard to believe we are coming up on one year since Nicolas finished treatment. October 1st marks this remarkable anniversary. Nicolas has come a long way, yet he still has some massive mountains to climb. He continues to inspire us every day.

September marks a month long campaign to bring awareness to Childhood Cancer. I am honoured to be participating with the LP Runners on September 21st in a 125 KM relay from Bolton to Blue Mountain to raise funds and awareness for this horrible disease. I want to take this opportunity as a shameless plug to support my fundraising efforts, but also to THANK you all for your support over the past year and a half. The emails, comments on this blog, texts thoughts and prayers from all of you have really helped us all get through this. And of course I hope to one day see an end to childhood cancer.

I thank you for taking the time to read this and visiting my fundraising page:

http://searscanada.akaraisin.com/pledge/Participant/Home.aspx?seid=6189&mid=9&pid=1222895

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Cancer sucks…we all know that. The side effects of Chemo and Radiation, well they suck too! Beside all the usual effects such as sickness, vomiting, bloating, hair loss etc. we now know the harsh reality that it can cause some more significant effects such as hearing loss, vision problems and dental problems. This is where we are now with Nicolas.

 

Unfortunately, Nicolas has sustained severe dental problems due to the combined treatment. He will undergo surgery on August 19th to try to help out, however at this time we are unsure as to what the final outcome will be.  He will need to have many of his teeth pulled out, and they will try to save via root canal and caps, as many as they can. They will not know until they are in there how bad (or good) the outcome will be.  Of course they also can not put any metal in his mouth as this will affect the MRI’s which he continues to have every 3 months.

 

This of course has been rather upsetting to his parents given that he will likely not have many teeth until his adult ones come in. Not only cosmetically, but because Nicolas is still not talking or eating very much. Not having teeth will not make things any easier.  On top of this, Nicolas also has an eye problem which is also on the radar for possible surgery. He will be seeing the pediatric opthamologist in October for a definitive answer.

 

We also found out recently that Nicolas has a thyroid problem, which again is a direct result of radiation to the brain (pituitary). Luckily, this can be regulated via medication and regular blood test to monitor his thyroid levels.

 

Nicolas is still working regularly with the therapist and although he is making some progress ie: starting to babble and making some sounds and walking short distances with assistance, he still not actually walking or talking yet.

 

Of course the most important thing is that the Cancer continues to stay away, but the difficulties and struggles clearly continue on as Nicolas pushes forward to overcome these challenges.  What he has had to endure, and what he continues to go through is more than most of us will ever know in our lifetime. Generally, Nicolas is happy and smiles and loves to snuggle (although mostly with his mom!). His strength and courage is inspiring to us all and I am looking forward to celebrating his 3rd birthday in July.

1 year ago today…

Most anniversaries are spent celebrating with food, drink and parties, however this type of anniversary is more one of reflection and hope for a brave little lion named Nicolas.

It was one year ago today that Andrea and Mario walked into Sick Kids Hospital with a feeling that something was not right with their baby. 3 hours and 1 MRI later they were given the most grave diagnosis a parent could get….your child has a massive brain tumour that needs to be removed immediately. I spent some time last night reading over my blog entries and reflecting on the past year.  4 brain surgeries, 33 rounds of radiation, 4 rounds of chemo, not to mention a bout with meningitis among many other peaks and valleys over the past year. It is absolutely incredible to imagine this little baby enduring so much.  Nicolas has shown us all what Courage and Bravery really is. For me personally, he has also taught me a lesson in Humility, to appreciate all the little gifts in life and not to take for granted our precious gift of life.

Nicolas has Kicked Cancer’s Butt”!! And he continues to work hard everyday in therapy as he attempts to learn the basic skills of walking, talking and eating.  It has been an uphill battle for him and the results have been slow to come, however all of that seems so unimportant given the mountain he has already climbed.

Despite the fact that Nicolas has done so well, I am always reminded of the children who have not had such great results, and those who are still fighting everyday.  I have met so many wonderful families through this journey who have provided love, support and guidance even though they themselves were dealing with the same frightening disease. I am reminded daily of the fight that continues for them and even for Nicolas given the fact that Ependymoma is a highly recurrent Cancer. I guess the lesson in all of this is that CANCER SUCKS! And no one deserves to suffer like this. We need to find a CURE and there is no reason why this can’t happen…and happen soon. I personally have committed to helping to raise awareness and funds towards finding a cure.  More to come on this soon!  For today, we will reflect on a year now behind us, learn from it, and look forward to great things to come, and most importantly live each day to its fullest potential.

Nicolas, you are my HERO!

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