Archive for September, 2012


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!

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I am very happy to update you all on Nicolas today.  This past weekend we celebrated a family wedding, and YES, Nicolas was happy and well and able to attend AND participate in the wedding for his Uncle Doug and Aunt Sylvia 🙂  It was a beautiful day to celebrate love and family and having Nicolas in such good spirits really was the icing on the cake.

 

Today Nicolas was admitted to Sick Kids Hospital for his 4th and Final round of Chemotherapy. He will be in for 3-4 days and then will return home again to finish out this 28 day cycle.  As of October 2nd, Nicolas will be officially finished with his treatment protocol.  It is hard to believe how far we have come in the last 8 months and that we are finally nearing the end.

 

Once the treatment is complete, Nicolas will begin rehabilitation at Bloorview childrens hospital and will continue to have regular MRIs.  I will continue to keep you all up to date with Nicolas’ progress.