Archive for April, 2012


Treatment # 20!

Today is radiation treatment #20 for Nicolas, which means only 13 treatments left! It seems like it has taken forever to get to this point, but he is finally seeing an end in sight.  If all goes according to plan (cross your fingers!) he will have his last radiation treatment on Thursday May 17th.  Of course there will be the next chapter of Chemo – but lets celebrate each milestone for Nicolas.

I was able to spend the afternoon with Nicolas and family yesterday as we celebrated Uncle Doug’s birthday.  Nicolas was looking very good and seemed to be having a good day.  During the week while he is undergoing treatment – it is very rough on him and his family. However after 1.5 days of no treatment on the weekends, Nicolas does seem to perk up somewhat.

On a positive note, the medication seems to be helping Nicolas eat – well mostly he just drinks Pediasure, but he nibbles on some real food too.  He enjoyed some ice cream yesterday….and we all enjoyed seeing him eat it 🙂

Doug's Soccer Birthday Party!

 

http://www.cern-foundation.org/Content.aspx?id=1006

 

I thought it would be appropriate to make mention of the great effort the CERN Foundation is making to bring awareness to this awful disease.  Please take a moment to look at their site or check out my Blog Roll and read some of the stories of other brave soldiers fighting brain cancer.  I have really become inspired and strengthened by the amazing spirits of those afflicted with Ependymoma.

 

My thoughts and prayers are with you all, today and always.

 

 

 

The roller coaster continues! It is a constant theme for this journey.  I no sooner updated this blog (Wednesday evening) then Thursday we hit another bump in the road.  Nicolas went down for his treatment on Thursday and as soon as they sedated him he started having respiratory issues. They could not proceed with the radiation but rather had to wake him back up.  Nicolas does have a little bit of a cold, so that may be the cause, but we really don’t know for sure.

 

The decision was made to send him home and to also take Friday off too, just to see if that will help.  Nicolas will go back on Monday April 16th and they will attempt to proceed again with treatment #10.

 

I was able to go visit with Nicolas on Friday to get my fill of hugs and kisses.  I am always amazed at his fighting spirit, despite all he is going through.  He is a feisty one for sure 🙂  All my LOVE and PRAYERS for the de la Fuente family as they continue this journey of recovery with Nicolas.

Radiation Day 9

As you all know, Nicolas ended up having surgery on March 28th to insert a cerebral shunt. This is a drain which allows excess cerebrospinal fluid to drain from the brain to prevent hydrocephalus.  Nicolas had been struggling with draining this CSF fluid throughout his time at Sick Kids, however we were hoping his body would eventually regulate this on his own.  On the morning of the 28th, Nicolas was showing signs of significant pressure on his brain from the build up of fluid and as such the shunt was inserted immediately.

Nicolas tolerated the surgery well and was discharged home on Friday March 30th.  He has now resumed his radiation treatment at Princess Margaret and is currently on Day 9 (of 33 treatments).

Nicolas certainly has struggles, from being tired and lethargic, to being grumpy and frustrated – likely due to his inability to communicate with his parents. However, all things considered, Nicolas is a tough little guy with the sweetest smile.

One of the biggest challenges right now is getting Nicolas to eat.  He is very small and does not seem to have an appetite. Currently we are just happy if we can get a few feedings of PediaSure or Boost – the childrens supplement shakes into him each day.  Some days he nibbles on some food….but most days he is just not interested.  The doctors have given him medication to settle his tummy and to try and make him hungry (can you imagine needing that???)  so hopefully that will help.

I am happy to say that despite all our worries, we had a wonderful Easter weekend with the family.  Going through something like this really teaches you the importance of Family, Love and what is truly important in life.