The Book of Me

In case you missed it on my other social feeds, I have teamed up with my amazingly talented daughter Mackenzie for this video project. As a way to give her an outlet and a voice in the chaos of childhood cancer, she has created The Feelings Lab (yes! she was the one to come up with the creative title). This lab is where she will demonstrate ways and tools she has learned to deal with her big feelings and she encourages others to experiment with these things to find what works to help calm their big emotions. It has been amazing to say the least to see my daughter excel in front of the camera and to  bond over something we truly have talent for together. We are the perfect team. She is great in front of the camera and I enjoy the behind the scenes stuff. Please take a moment to look at the videos, subscribe to The Feelings Lab and help encourage this sweet girl's dream of making it on TV someday. Thanks! The Feelings Lab - Trailer A Sibling's Story - Episode 1 The F...

The hustle and bustle of Chrismastime can make any normal functioning family want to pull their hair out. From getting all the right gifts, the wrapping, the decorations, the baking and preparing the feast, there is no vacation about that. But these tasks, no matter how time consuming make Christmas Christmas. They stimulate our senses and ignite the Christmas spirit within us. However, for some, it is simply too much. Christmas is not a merry time for all. And for some it's not a choice to be the grinch or bah humbug for Christmas. For some, like my son, it is forced upon him by steroids; necessary medication to reduce his symptoms of brain swelling. The drug can also cause horrendous side effects in some people and it plays especially hard on Xavier's emotions. My 7 year old son is depressed for Chrismas. He doesn't care Santa is coming... in fact he believes Santa shouldn't come because he has been a terrible boy for crying all the time. And like others who suf...

I am lost in my own world I am frightened The thoughts keep racing in my mind; lap after lap I am sad Gone is the world we had; life is different now God, is this what grief looks like? There is no turning back; only acceptance in our future Lost are our expectations; the picture of perfection we had I turn inwards in my pain I am mad This was not the way it was supposed to be; we tried Now we cry God, is this what mourning looks like? Trying to stay faithful, trusting in His plan I pray for miracles, of a life we used to have I am loved But love cannot take away what has already been done Love won’t fix it; the scars are deep   God, is this it?

We are on the road to recovery!  Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost.  He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month.  Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen  on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery.   Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are!  But the lingering side effect of treatment ...

Six weeks ago my husband and I were given news that would make any loving parent crumple up into a ball of despair.  Your child is dying.  On August 2 a trusted surgeon who has seen us through our seven-year battle with our son's cancer reluctantly gave us the news. His tumour had doubled in size within two months. The cancer was angry. The last round of radiation only fuelled its furry as it aggressively invaded Xavier's brain.  Our only option was surgery to temporarily relieve his symptoms as he would suffer a terrible death from brainstem deterioration.  Imagine having to digest this news as you sleep on a chair beside your ill child in hospital.  We spent the weekend in mourning.  By Monday his team of doctors, including his radiation oncologist, surprised us with another possibly theory.  The tumour may not be cancer at all. It may be a mass of decaying brain tissue severely damaged by radiosurgery.  Relucta...

When your child leaves the hospital after a medical procedure, you expect them to be better. You have some confirmation or resolution to the problem and a followup.  This week when we left the hospital with our son Xavier, it was a completely different feel than usual. Being in hospital and having him undergo surgery is sadly old hat for our family. However, this time was different.  In the past, we had always left with a plan, some resolution -- with a fight against his cancer whether it was radiation to finish the job or to recover from a successful surgery.  This time is different. We have made a transition of care. We are no longer in attack mode. We have no arsenal left nor intelligence about our enemy.   When Xavier's surgeon said we were free to leave Friday, we were hesitant. In fact, we said no. We wanted to stay another night. There is so much uncertainty in his condition now, the hospital is strangely comfortable.  Perhaps it was...

Tomorrow is yet another anniversary in our life that we would rather not remember. On April 30, 2015 we were told Xavier's cancer was back. It hit me like a stray bullet. We were expecting news about a possible ventricle blockage, but did not even suspect the tumour. It was late in the day when JoAnn, our clinic nurse, called. I was at work and went into an empty office to talk to her. She was devastated to break the news to us, but they needed us back at the  hospital in two days. I was in disbelief. Shaking and not really comprehending what she had just told me. It wasn't sinking in and I didn't want it to. He wasn't going to go through this again. The rest of that afternoon is blurry. I remember my boss and a coworker driving me home. I remember trembling as I walked into the house knowing I now had to break the news to Mark. I just hugged him and didn't say a word. That alone was enough. He knew. I am so happy to be where we are today. It was a long an...