Here is some of his story as told by his family:
Luc was born with a genetic Bone disorder called " Spondyloepimetaphysialdysplagia " which caused his Bilateral Hearing loss ( he wears hearing aids on both ears ) and his bones grow at 2 to 3 times the normal diameter and flare at the joints. Between age 5 and seven at some point he developed a spontaneous fracture in his neck at C2, which has been stable since and he has had yearly MRi's since to make sure there is not even the slightest deviation at C2.
August 2010, Luc age 14 developed a peticial rash. September 2010 it was just contributed to eczema. At the end of October the family doctor was referring us to a Dermatologist ( that appointment February 2011 ) ( Don't need it now ).
Towards the end of October his normally large appetite is on the decline and chronic body aches. November 1st, Luc's weight was noticeably dropping, by November 10th we are getting calls from teachers that he has been falling asleep in classes, he was coming home from school and going straight to bed and sleeping through til morning, we took him back to family Doctor, who orders blood work and thinks it is likely Mono.
November 15th , Luc is now weak and turning Blue, the Doctor sends him into Victoria General Hospital Emergency. Luc and my wife Dana spend the next nine days in VGH having every test from Mono to Malaria being tested for, finally on November 25th they do a chest xray and then a chest CTSCAN which show Lymphoma ( Cancer ) through out his chest, on his lungs, heart, everywhere. Luc and Dana are then flown by Air Ambulance Helicopter on the morning of Friday November 26th to Children's Hospital in Vancouver.
On Sunday November 28th, after making arrangements for Dana's parents to come and stay with our other two son's Noah age 9 and Tristan age 15 and having taken care of other work related issues for both of us, etc. I joined Dana and Luc in Vancouver. Over the following eight days, Children's redoes all the tests VGH did, putting us through an emotional roller coaster like no other. Spinal taps, Bilateral Bone Marrow Biopsies, Lymph node Biopsies, radioactive PETSCAN, multiple daily blood tests. Finally on December 15th we are officially told that Luc has " Complex T - Cell Non - Hodgkin's Lymphoma with secondary Leukemia in the Bone Marrow".
A Spinal tap and chemotherapy commenced the next morning, once the first 28 days of chemotherapy are complete the 2nd week of January we will find out how Luc is responding to treatment and how his Chemo will be adjusted for the next six to seven months of aggressive chemo. At that point we will find out what portions of the treatment can be done in Victoria, the preliminary guess from our Oncologist is best case scenario Luc will have to be at Children's every second or third week for a week at a time with the rest being done in Victoria. Worst case scenario will be complete treatment at Children's. After the six to seven months of aggressive, we will be looking at 2 to 3 years of maintenance chemo.
At this point Dana has been off work from Thrifty foods ( Colwood Corners ) and Quizno's ( on Douglas street ) since November 14th and will have to continue to be off work until at least September of 2011 at the earliest. I have been off work since November 26th, but fortunately for me my coworkers have been working my shifts allowing me to so far maintain my full wage. Through the generosity of so many in the community we are managing to pay our bills and basically keep our divided family in two separate cities.
Ed Savage
