Category: Ependymoma


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 – 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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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.

 

 

 

 

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!!!

“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

 

 

 

 

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!

 

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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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Officially in Remission!!!

I am so happy to announce on behalf of Andrea and Mario that Nicolas’ MRI today was CLEAN!!! Some of you may or may not have known, that his last MRI showed a “spot” which the doctors could not identify. This news of course caused us all a lot of anxiety. However, today, Dr. Bouffet gave us all the much awaited news that the spot is gone and his ventricles look great!

 

There is no greater gift in the world then news like this.  Today, December 11th 2012 – 11  (long) months since Nicolas was first diagnosed.  It has been a very long and difficult road, which of course is not yet over.  But there is so much hope in my heart right now I plan on just letting it all soak in and appreciate it.  Thank you all for following along on this journey, providing your love and support through all the ups and downs. Cancer is really such a horrible disease, and for it to hit these little babies (most Ependymoma patients are under the age of 5) just seems so unfair….but I also realize…there is nothing good or fair about Cancer.

 

By way of update on Nicolas’ progress, he is still attending daily at Bloorview Kids Rehabilitation Hospital for therapy to learn how to walk and talk.  He is not quite there yet, but we feel confident that he will get there soon.  Nicolas is learning sign language and this is helping him to communicate with his mom and dad for now until he learns how to talk. I myself had a “crash” course on Sign when I was over visiting with him on the weekend :-).  Nicolas looked great and his hair is starting to come back in and his beautiful, long eyelashes have already grown back.  I am very much looking forward to celebrating the holidays with the family.

 

I wish you all a very Merry Christmas and a Healthy 2013!

 

 

 

 

Hopefully Hearing!

Here is a quick update to show you Nicolas with his new hearing aid. He got it on Wednesday October 31, 2012. We are all hoping now he can hear us and will benefit from his speech therapy and will be talking soon. Nicolas has been learning some sign language, but hopefully won’t need it now.

Such a handsome and brave little man!

We are still waiting for the MRI date and as such, will continue to pray for “No Cancer”!

Hearing / Vision Test

After countless hearing test, all of which came back “inconclusive”, they finally decided to do a more thorough test whereby they put Nicolas to sleep and do an internal hearing test today.  Well, the results were not what we had hoped for, but in the grand scheme of things this is a hurdle we can deal with.

Nicolas has no hearing at all in his right ear, his left ear has some hearing but not in the higher frequency. So, today Nicolas was fitted for a hearing aid for his left ear so that he will be able to get back most of his hearing on that side.  This should help him now that he is in speech therapy so that he can learn to talk.  It may be possible for Nicolas to have a cochlear implant for the right ear at some point in the future, but not at this time.

Nicolas also had a vision test last week which came back good.  He does have one eye that is a little weak, but nothing that needs treatment at this time.  As he gains in strength he will likely outgrow this.

We are still waiting for the date of his next MRI, until then we will hold Nicolas in our thoughts and prayers to continue to be Cancer Free!