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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.

“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!

Officially Finished!!!

Nicolas is officially finished treatment.  After 4 brain surgeries, 33 radiation treatments and 4 rounds of chemo….just to name a few of the many procedures he has had to endure. Not to mention the many ups and downs and a far too many scary days/nights, he is done.  So, what’s next??? Nicolas will go back to Sick Kids today for some tests, assessments and clinic. Nicolas has also started to have some tremors since his most recent surgery. We are not sure if this is temporary or an affect from the surgery that will be more long lasting. We are also hoping that they will have a meeting with the “Team” to discuss this as well as finalize the date for the next MRI.

 

Nicolas is also scheduled to start Rehab at Bloorview aka “Baby Boot Camp” on Tuesday October 9th to help him get back up to speed with all his milestones. We need to get Nicolas eating and get him strong again. All this aggressive treatment has really taken a toll on him.

 

We are still waiting to hear when Nicolas’ next MRI will be, but we expect it to be in about 6 – 8 weeks time.  The plan will be to monitor him every 2 – 3 months in this manner where they will be checking to make sure that all the Cancer is gone and continues to stay away!  I will be sure to post the dates for his MRI on here and hope you will all keep Nicolas in your thoughts and prayers.

What goes up…Must come down!

And we have certainly been knocked back to reality again. Nicolas was doing so well and we were ever so close to his “end of treatment” date (October 2/12) that it was almost harder then ever to hear Nicolas was having problems again.

It started with his blood counts being low and requiring another blood and platelet transfusion, okay, nothing out of the normal here.  Then progressed to his eyes having “wonky” movement, which we now know as a sure sign of intracranial pressure. Nicolas was taken back into Sick Kids on Wednesday and it turns out that he 1) has an infection (again) in his port 2) he has enlarged ventricles and excess fluid 3) his Shunt is not working.  So, after a battery of test including an unscheduled MRI, it was off to surgery.

Nicolas underwent surgery yesterday, Thursday Sept.20th to have his shunt repaired.  The surgery went well, they had to replace the valve and they decided to shorten the length of the tube.  However, when he came out of surgery he was having trouble breathing (again).  This happened after his last surgery, so although it is scary, it is amazing how you adapt and learn that it just means he will need a little extra care.  So, Nicolas spent the night in the step-down Observation unit, but appears to be doing much better today.

Today, Nicolas had a CT scan and XRay and we are still awaiting the results from all of these tests.  I heard the term recently “Scanxiety”, although it is not in Websters Dictionary, it is totally applicable to those of us with loved ones fighting Cancer.  After every scan, we sit anxiously awaiting a hint of good news. Please tell us all is clear…that our loved ones are safe.  Well, it will appear we will have to wait a little while longer.

September is “Childhood Cancer Awareness Month”, “October is Brain Tumour Awareness”.  Sadly, I have to admit that I didn’t know this before January 10, 2012. Since that day, I have learned so much about not only Ependymoma, but Brain Tumour’s in general.  The number of children effected by this disease are staggering, and here are some cold hard facts:

1 in 46 children will be diagnoses with a Brain Tumour each year.

Every day, 27 Canadians are diagnosed with a brain tumour

Brain tumours are the leading cause of solid cancer death in children under the age of 20, now surpassing acute lymphoblastic leukemia.

I hope this website not only keeps you informed about Nicolas’ journey with Ependymoma, but helps spread the word of how many children are fighting this terrible disease. We need funds allocated to this….we need a CURE!