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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

It is hard to believe that three years have passed since we all made that difficult trek down to Sick Kids Hospital with the news of Nicolas’ brain tumor diagnosis weighing heavily on our hearts. No one could predict what the future held, but with an incredible amount of courage, support and a wonderful team of doctors, Nicolas continues to amaze us all.

I am happy to report that Nicolas continues to grow (thanks to a daily injection of growth hormone) and is walking/running around with little effort. Although his speech has yet to come, he certainly has some great ways of communicating and telling us what he wants. As always, Nicolas is a gently loving soul who is always open to giving endless amounts of hugs and kisses.

Nicolas is progressing well at school (junior kindergarten) and is enjoying the social aspect that comes with it. He also continues with all his therapies and endless amounts of medical appointments. I take my hat off to both Andrea and Mario for their daily strife and struggles as they navigate parenthood under such extraordinary circumstances. The coordination of care and dedication required of a “Cancer parent” is unparalleled.

Now to bring you up-to-date on Nicolas’ medical status, he will be undergoing what will hopefully be his last surgery to correct his eye which was damaged during his prior treatment. That will take place on January 16th at Sick Kids.

Nicolas will be also undergoing his 3 month Brain MRI on January 21 to make sure there has not been any tumor re-growth. Please send all your prayers to Nicolas for “No Evidence of Disease” aka: NED!

Lastly, on January 23 he will have his follow up appointments with (1) Neuro-oncology (2) endocrine (bloodwork and results) and (3) surgery follow-up.

I have attached some pictures from Christmas so you can see how great Nicolas looks. I hope you all had a wonderful Christmas and wish you all a Happy and Healthy 2015!

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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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The Run to #EndKidsCancer

This post is a couple of weeks late, however I wanted to Thank Everyone for their support and donations for the “Sears Great Canadian Run to End Childhood Cancer” which took place on September 21, 2013.  I joined up with the LP Runners and together we were able to raise a total of $14,414.10!!!!  We are all so very grateful to all of our family and friends who supported us with donations along with the many emails, texts and phone calls to wish us well on the journey from Bolton to Blue Mountain.  Despite the pouring rain, it was an amazing and inspiring day.  Luckily, the last 30 minutes or so before we got up to Blue Mountain the sun came out and we had a wonderful finish.

 

I have attached some photos from the day including our brave Nicolas and his supportive sister Sofia who were at the finish line and ran the last 100 meters with us, along with my two kids (Madison and Joshua) and of course Nicoloas’ mom and dad and grandparents were also there to cheer us on. I have to give a shout out to Grandma who ordered us all T-shirts that read “The Little Lion”, “The Little Lion’s Sister”, The Little Lions Aunt”, which of course is the nickname given to Nicolas as he bravely fought Cancer.

 

I would also like to mention we also had another Childhood Cancer survivor run with us on September 21.  Victoria who underwent treatment at Siick Kids for Lymphoma at the age of 16. She is a 3 year survivor and is currently a student at the University of Toronto.  Unfortunately, she had a terrible knee injury for the race but still managed to hobble out a 3 KM leg with her dad Don.  It was great to meet Victoria and hear her story and share in this experience with such great people, and of course raise money to #EndKidsCancer!

 

As we are just getting ready to celebrate Thanksgiving weekend, I want to wish you all Health, Love and Happiness. I know we have so much to be thankful for and plan on having some much needed family time this weekend.

 

 

 

 

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

Scan, Surgery and so much more!

I am happy to say that Nicolas had a great 3rd birthday celebration and even enjoyed a little icing and ice cream :-). Nicolas was surrounded with family and friends who all took such joy in watching him play with his new toys.

Nicolas is making a few more sounds and is looking stronger. He has a full head of dark hair and a smile that would melt your heart. He continues with therapy and is working hard on speech, mobility and balance (just to name a few).

I mentioned in my last post that Nicolas is having surgery on August 19th to remove all the decayed teeth. We are hoping they will be able to save a few, but we won’t know until he is out of surgery.

We have also learned that Nicolas’ pituitary gland is not working at all. Unfortunately the pituitary was in the field of the radiation and was destroyed. His body is not producing “growth hormone” or “Cortisol” and his thyroid is not working at all. He has started on medication and injections for this.

Apparently the most concerning is that his body will not make cortisol. This is the ” fight or flight” response hormone and is responsible for regulating blood pressure, metabolism, insulin, immune function, and inflammatory response. Nicolas will need to be closely watched for this and given meds 3 x a day, as well as an emergency dose if/when he encounters a stressful situation which could be something as minor as stubbing a toe or taking a test, to the more extreme if he gets frightened or breaks a bone etc.

Last but not least, Nicolas will be having his MRI on August 23rd. We are all praying and sending positive “Cancer Free” thoughts to Nicolas for a clean scan. As difficult as all these secondary issues are,the main goal here is to keep the Cancer beast away!!!