Monday, September 1, 2014

Happy 9th Birthday to my Hero on the 1st Day of Childhood Cancer Awareness Month

Today, September 1st,  is a wonderful day as I feel honoured and blessed to celebrate my son's life.  My son has walked his nine young years with a smile and bliss in his footsteps.  A life that has come with a fight unlike other children who do not fight cancer.  He has battled cancer twice, received high risk chemotherapy, cranial and full body radiation, and underwent a bone marrow transplant.  Yet, he continues to walk with a spirit of such inner beauty.  I may be the biased mother, but I can truly say with such observation that Gabriel has walked with such inner beauty and his cancer journey has only increased his inner grace, empathy, and humbleness.  He loves with words, affection and speaks of the adversities of this world with words of a wisdom beyond his years.  He is a remarkable young boy. 

Today, September 1st, is also the beginning of "National Childhood Cancer Awareness" month.  The month that I will inundate social media sites with as much awareness of the outcome of paediatric cancer to children and their families.  I made a decision almost one year ago to remove all contacts from my Facebook profile and to close my community page as it reminded me of the constancy that cancer had over my family's life.  Nevertheless, I returned with a fresh perspective and wanting to continue connecting with people whether it was to simply to check in or to use social media as way to promote awareness.  My son's diagnosis and relapse is a story not unlike other children who have fought or fighting cancer.  Each child does have uniqueness to their story, but all families share the story of suffering, pain and watching their child fight a disease that receives only 4% of all cancer funding.  There are also families that have a story of loss.  The first day of school is tomorrow, and parents are excited about this return.   The families that have experienced loss wish that they could see their child pick out their back pack, prepare clothes the night before, help pack lunch, and wish them a good night sleep. But, this will not occur for such families.  A pain that will never leave.  A constant reminder as every symbolic day comes that cannot be shared with the one that cancer took. 

Finally, there are children experiencing negative outcomes caused by cancer treatment.  A doctor may whisper the word "cured," but this often comes with hesitancy as the future often causes further concern.  Parents know the statistics of treatment side effects and secondary cancers from radiation and chemotherapy.   Parents observe their child as symptoms surface and question "Is this a side effect?"  "Will it get worse?"  "What does it mean?"  "Who is the next specialist that my child will see?"  Every bruise, bump, memory loss, pain, ache is a fear and a question.   For example, my son has seen the following specialists: Nephrologist, Endocrinologist, Ophthalmologist, Urologist, and that has been only two years post transplant.  Some people may even have to "google" the titles to determine their area of specialization.  I would not feel embarrassed about googling such titles because it means you don't have these concerns.  You should feel grateful and blessed when you look at your child[ren].

The journey looks different after treatment, and the more treatment you have the more future concerns arise.  Currently, my son's story is determining whether he will have to proceed on hormonal injection therapy so he can grow and develop.  More needles... because this is what a parent wants to keep doing to their child.  He has seen the above specialists for symptoms that have surfaced that may be concerning, but our Oncologists wants to catch early.  This is our story...  We want our story to be different and the story for many other families to be different.  "It is.. what it is."  A common phrase amongst Oncology families.  That does not mean we don't want change.  We do not want to know all the areas of a medical system, but it is our reality and the reality of many families. 

Most people argue that the cure rate for childhood cancer has become better compared to years prior.  However, 25% of children will not survive and a significant percentage of children will have side effects and secondary cancers from treatment.  (http://childhoodcancer.ca/education/facts_figures)

I write this blog to continue carrying the message of change.  Today, is my son's birthday, but it is also the reminder of how much awareness is needed to end the pain of childhood cancer.  We need more funding for research so we can understand why children are being diagnosed with cancer,  better treatment and to cure cancers that cause mortality.  We are not finished.... not until treatment outcomes are better and more importantly when mortality rates do not exist. 

 Check out the "8 brutal truths about childhood cancer" in the article below.

http://themourningafternatasha.wordpress.com/kids-and-cancer-8-brutal-truths-to-choke-on/


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