The Book of Me

Buried deep within my soul is a fire. It burns slowly; smouldering inside me day after day. I long for the day when this fire rages again. Like it used to before I smothered it with life. Before kids, before mortgages, bills, illnesses and medical interventions, there was something else on my mind. It was fuelled by almost everything around me and grew stronger with every use. This was something that took me through dark spiralling tunnels, across cobalt blue seas with purple monkeys swimming and up mossy green mountains that whispered cool breezes. It sparked all my  senses and tugged at my heart. It sent shivers down my spine and excitement in my belly. And sometimes it paid. My creativity was ignited by an imagination as unique as every snowflake that falls. The words came to me, the stories flowed and the imagery made sense. I created eloquent editorial and powerful prose. But somehow along the way I lost my creative spirit. I pushed it away. I pushed it down. I push...

On December 1, Mackenzie and Xavier gave back to McMaster Hospital. After collecting money from family and friends, Mackenzie and Maria from ChildLife handed out MacKids plush toy Finnegan the Fox to the children on the cancer ward (3Y) at McMaster Children's Hospital. Xavier then presented his doctors and other helpers in the Neuroncology Clinic (3F) with a Christmas plant and card to say Thank You for providing him the best care! I am so proud of them for their kind hearts!

I often get asked: How do you do it? How do I manage to stay calm when everything around me is uncertain; keep my head on my shoulders and maintain the best "normal"our family can have amongst all of the struggles... The simple answer is I just do what I have to do. It is during those most difficult times when you just find the strength you never even knew you had. But there are really four key strategies I use to stay calm, stay sane and positive throughout this journey: 1. I pray. 2. I learn just enough. 3. I check-in with myself regularly. 4. I live life. Let's break those down (and I strongly encourage anyone to follow these strategies because life is hard no matter what) 1. I pray every day that God takes my fears in exchange for strength.  I pray that He brings comfort to my children and will soothe our aching hearts. And I never forget to thank Him for the blessed life he has given me. 2. I learn and educate myself about what treatments my son wi...

Life takes you on some unexpected turns and you never know where it will go. But the most important thing is to keep focused on looking forward. Again today I find myself full of bittersweet emotions as I leave my job to focus more on my family. It seems like a no-brainer, but it has been a difficult decision - and not the first time I have done this. Back in 2010 after Xavier's diagnosis and first round of treatment, I returned to my job as a reporter with the local newspaper. It didn't take me long to realize the stress of the job, the deadlines and the politics, was not worth the anxiety it carried with me at home. I still struggled to pull the plug and hand in my resignation, but after I did, it was a huge relief. I could be there for my kids and I could take care of me. Life eventually settled and I accepted the past for what it was ...  Five years later, I rebuilt a new career because working (for the money and my own self-confidence) has a...

As far as my son knows, there was a dragon in his head. This dragon was big and scary and made him feel sick. But as far as my son knows, we stomped that dragon out. The idea of Xavier's cancerous tumour being a dragon in his head came from a movie that had been given to me by another mom of childhood cancer. Paul and The Dragon is a powerful 20-minute video of a young boy with cancer. Although it is generic (not about brain tumours), and there are no words, it is incredibly telling. For any family who has been through a similar experience, you will instantly connect with this boy and his family. And for my kids, who are very young and don't exactly understand medical terminology, the story is easy to understand and has provided a great foundation for how to talk to them about Xavier's journey with cancer. The movie was so popular among my kids that it became part of our regular Friday night movie rotation. My son even requested it while he was in the hos...

Link to my initial blog:  http://mackandx.blogspot.ca/ I started this blog initially to document life as a mom of twins, but even before a full year adjusting to two at once, our young family received the devastating news that one twin had an aggressive brain tumour. My last entry: "It was the best news we could possibly get. While what we want to hear is that he is cured, we know that is not a reality. However, today's news puts us a little closer to hearing that. Given the aggressiveness of his cancer and its past behaviour off treatment, doctors were impressed with the MRI results and his progress thus far. ... When I find myself thinking negatively, I find strength in these statements. I say them with conviction and believe them. This journey is not over, but I am celebrating today. - 2011

One boy's tragedy, is another boy's hope I want to say thank you to Evan Leversage and his family.  As I write this, Evan is in palliative care with an inoperable brain tumour and his family preparing to say good-bye.  But last month, a community, a region and a nation came together to bring one last Christmas to this amazing 7-year-old boy in his hometown of St. George, ON.  His story has gripped the hearts of millions of people, and renewed faith in humanity. But Evan has also brought our family an early Christmas gift. Evan has given us hope. His story has attracted media attention from networks across the province and with it bringing to light the much-needed awareness of paediatric brain tumours.  This little boy's wish, his journey and his smile have ignited a flurry of media reports and the reality that more needs to be done to treat and cure brain tumours in our children.  Because of that attention, I have hope the momentum wil...

I respect everyone who wants to help our family and offer some advice on how to help in our current situation, but I am frustrated because most people just don't understand the complexity of the issues. I am so tired of hearing, in some form of another, just make them suck it up! My children are behaving normally for a 3-4 year old. They are 6. Their behaviour is associated with many internal hurts, trauma from our experience of having a child with cancer. Yes, someday things will have to be different. But just a few short months ago our lives were turned upside down again. Look at it this way... if your child got hit my a car and had a gushing open wound to the head or leg, would you just tell them to suck it up?? Of course not. You would need to seek medical treatment ASAP and have them treat the wound so it can heal properly followed by proper physio therapy. Well my kids have a big open wounds in their hearts right now. If we leave it and just make them suck it up th...

Many thoughts are consuming me tonight after the emotional turmoil our family endured today on this first MRI since Xavier's treatment ended.  I have learned a lot on this journey (an much more to learn) through therapy and continuously reading and researching. And if there is a positive in this nightmare, it's that I am becoming the best I can be - a better person as we continue this difficult path. One thing I have learned is that grief is not something you only experience from the loss of a physical being. Grief can be experienced in many situations including the loss of an expectation that will never be. We are grieving. We are grieving that normal life we anticipated. Our reality will never be what we expected nor will it be like any others. Our lives, and us as individuals have been shaped and grown in many ways from our experience. But for this we must also grieve.  In time we have to reach acceptance that our lives are different, our fears are different and ...

Today was tough. Today was my first day back to work after spending the last 2.5 months caring for my most prized possessions: my children. But now after another devastating round with cancer, it's time for our family to try to find our new normal again. But it's hard. We never had "normal". I guess it's our own definition of normal, just like each and every other family out there.  But today was tough.  Today I had to walk away from my children's tears and go back to what was routine before April 30th happened. My heart sank and my own eyes welled as I drove away waving like a panicked swimmer in shark-ridden waters. It was the first day of kindergarten for us all over again.  Except today was tougher.  Today my children were still suffering from the scars left from a month of unusual terminology, strange places and people who cut other people open but are called heroes for doing so. A confusing time for two six-year-olds. It was unlike the two ...

I am a writer. But I am at a loss for words This journey has filled me with emotion trapped inside, not yet able to escape There have been glimpses of the flood ahead A trickle through the cracks But the gates have not opened I cannot find words for what haunts me inside This journey has been lived once before and will again, not an end in sight There have been glimpses of the flood ahead A trickle through the cracks But the gates have not opened Forever will I fear the unspoken words This journey has brought upon our lives in every day, not a rest to be had Until the gates open There is hope in the flood. A current so strong all fear washed away This journey has a purpose A plan so perfect not yet able to comprehend

Find your daily dose of positivity  Ever have days when you just can't watch or read any more news; when you have to turn the channel from that reality crime show or stop scrolling through your Twitter feed. You know those days when your own life is so overwhelming that consuming any more negativity in the world makes you sick to your stomach. For anyone who has had days like this, I want to help by giving you a place to come for a "good" read. For the next month, any blog entry, Facebook post or tweet will be positive. Consider it my personal "Chicken Soup" style blog. My pledge: No matter what happens in my life in the next 30 days, I will turn it into a positive. I will only share positive news stories. Sometimes I think it's OK to shut out the horrible things going on around us - for the sake of our mental health. We shouldn't be oblivious, but we also shouldn't endure the world's pain on a regular basis. As I was researchin...