Wednesday, 25 November 2015

Survival Strategies

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 will receive and the side effects. I read about his type of cancer and about his emotional well-being. But I don't read too much. I don't get obsessed with statistics and long lists of what ifs. I learn just what I need to know to feel comfortable about making safe decisions surrounding his plan of care.

3. I check-in and attune to my own thoughts and feelings. I ask myself: Am I doing ok? And I answer myself honestly. If I catch myself becoming overwhelmed, I stop and prioritize. I listen to my needs and have discovered ways to help myself during those 'down' times. Writing here is a great tool to check-in and decompress. I never really know what my fingers will type as I sometimes just let the thoughts flow without a filter.

4. I live life and refuse to let the uncertain future prevent me from enjoying today. I still go out for supper and/or drinks with friends. I empathize with my mom group about the daily struggles of parenthood like picky eaters and snotty-nosed kids that won't get to bed. I make time to visit family. Sometimes my kids need me home more than others, but I try to keep a healthy balance of enjoying what I love outside of the home as much as I do at home.

Overall, I don't wait for others to make me happy, or to make things better - I do it myself. I am full of love that pushes me harder and farther than any other emotion ever could.

Friday, 20 November 2015

A new direction

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 always been important to me. For as long as I can remember, what I did was who I was. So if I did nothing (no job, no career) than I was no one.

Now I have decided once again to leave this career behind in order to provide the much-needed support my family needs, including myself.  Xavier's relapse and ongoing care to both him and his sister has opened my eyes to the fact that I am EVERYTHING to my children. Of course this won't always be the case, but I want to take advantage of it while I can -- and do the best job in the world: being a mom. 

I am living my life, but focused on a different direction than I had originally seen myself doing. I didn't end up back in this place, making this decision again for no reason. It's because I am meant to do this.

Don't get my wrong, I am scared as hell! But I am doing it afraid because in my heart I know it is the right thing to do.

I have learned more from being a mom than I have in any  other job I have had. Not only did I get schooled in nursing through Xavier's cancer, but I am training to be a psychologist too! It is a challenge every day and demands my full attention.

And in the end, I know that the hard work will pay off for myself, my kids and my husband. And I am incredibly thankful that I have the opportunity to do this.

We all have ideas of how our life should be, and what we expect should be important to us. At the same time, we all know life on Earth is not permanent and at any moment, any one of us could be called to a better place. And for some of us like me, it takes a concrete example, like  my son's incurable brain cancer, to give us that kick in the ass to go against how we "think" it should be and just do what "it" is.

My "it" right now is to be a full-time Mom.

Who knows where life will go in the next while, but I am prepared to keep moving forward.

Monday, 16 November 2015

The dragon in his head

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 hospital again in June.

It has now become a trigger for me... I know he is worrying or feeling some strong emotion connected to his traumatic experience when he asks to watch Paul and The Dragon. It's his way of opening the dialogue between us and an opportunity for me to calm his fears.

My son doesn't understand what incurable means. And to him, the dragon in his head is gone... for now. We explained to him that doctors needed to go in and take the dragon out. When surgery did not go as well as expected (only part of the tumour could safely be removed) we told him they got most of the dragon except his tail. During radiation, we used the dragon again. An special invisible beam of light was going to be shone into his head and break the dragon's tail up into tiny little pieces so it couldn't bother him.

These explanations seemed to satisfy his inquiring mind and made it not so scary for myself as well. He knows the dragon could come back. But we don't talk about that. Right now, we tell him we stomped on that dragon!

Saturday, 14 November 2015

First round of cancer treatment

Link to my initial blog:

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

Wednesday, 11 November 2015

Brain Tumour Awareness

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 will continue and attract more research dollars, more clinical trials and someday a cure. 

I have hope someday, sooner than later, my son and all the other children with brain cancer will benefit from a discovery. Someday, sooner than later, childhood cancer will be as talked about as much as breast cancer.

Who knew a boy and his last Christmas could mean so much to so many. His cause in the spotlight could be the start of something big! 

For being the second most diagnosed type of childhood cancer, treatment lags behind others. Survival rates for the No. 1 diagnosed childhood cancer - Leukemia - have significantly improved. Now, more than 90 per cent of children are cured, according to St. Jude Children's Research Hospital.

But there are still no cures for many brain cancers. Only invasive treatment options with high risks and severe long-term effects are available. Five-year survival rates for my son's cancer have not improved in years. Still a quarter of every child diagnosed with anaplastic ependymoma dies within five years of diagnosis.

I know better treatments, a cure are out there, we just need to give this cause the attention it deserves!

My thoughts are with the Leverage's tonight and I pray that God gives them the strength they need during this difficult time.

Thursday, 5 November 2015

Open wounds

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 then the prognosis is poor, just like the poor kid with a physical injury. We are seeking treatment and we must give them time to heal before making them "run" again to prevent further damage.

Baby steps. Not just throw them into a big situation we know they do not have the tools to deal. Like putting your child with a healing leg that was broken into a race. Start with walking.

Dealing with emotional issues is challenging because it is not a physical thing you or anyone can see. Progress is hard to determine and knowing when to push is hard to judge. It is a process, and likely, a much longer process than that of a physical injury.

We must be patient and sensitive to their situation. And I like to think as a well connected parent, I will know when its real or manipulative behaviour. Right now, I feel their suffering. I am still suffering and I am an adult. So yes, we are dealing with things differently and giving them more choice than ordinarily. But right now tough and stressful situations normal for most kids become monstrous and overwhelming to mine. It's a BIG deal.

And in the end, if my failure as a parent is because I was too giving, too nice and too loving to my children, then so be it!