Wednesday, 9 November 2016

Suffering

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?

Monday, 31 October 2016

The aftermath is MESSY

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 is always the emotional scars. We know because we have done this before. The aftermath is messy. And it is much harder for others to understand when on the outside things are looking good. 

It started with my daughter. When the dust settled and the height of our chaos was over, she fell first. The uncontrollable tantrums. The inability to play with her peers and her low self-confidence. This all followed months of sleepless nights, fearing her brother was dying. 

Then I fell. After months of holding it together and staying strong for the family I reached my limit. My energy level diminished and I just want to sleep all day. I have no interest in socializing and it's so much work just to move my body. Then the flashbacks. No matter how much I try to push them out of my head, the traumatic events, the devastating words from the doctors keep replaying in my head. The emotions associated with them are exhausting me. 

Now Xavier is showing signs. It happened before. It starts with the nightmares, his own flashbacks of the medical trauma. He wakes up angry and unable to go back to sleep. The memories haunt him at dark. He becomes increasingly angry (this time not from the steroids) but the surmountable emotions flowing within him he cannot explain. He worries. A lot. He worries he will never get better. He worries he will have surgery again.  

I just wish I could take the pain away. 

We are still grieving our old normal as we try to accept once again our new normal. I often find myself longing for May when everything was great and Xavier just learned to ride his bike without training wheels. I look at him now. Fragile. Barely able to walk let alone ride a bike. 

But I tell myself, we will get there! We have done it before and we will do it again. He will surprise his doctors with his recovery once again and life will be even more beautiful than before because of the bonds and lessons learned from this experience. We only get better! There is no other direction. 





Sunday, 2 October 2016

How imminent death turned to hope

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. 
Reluctant to believe this was the case, we continued to process the fact our son's life was limited. We may only have months left to enjoy any quality of life. 
We started planning his funeral. 
Xavier headed into surgery and we were referred to the palliative care team at McMaster.
Surgery was unsuccessful and yielded no more answers than the initial MRI images (which we saw) clearly showed a large mass between his brainstem and cerebellum. 
We grieved some more. 
His condition deteriorated after surgery. He lost all mobility. The high dose of steroids to control the brain swelling stole him from us. We had lost our boy already and had only limited time left. 
Our hope in the theory this was a treatment side effect and not cancer faded. 
After six stomach-twisting, head-splitting and heart-throbbing weeks, we got answers.
Xavier was not dying. Instead, he is suffering from a serious - sometimes fatal - side effect of radiation treatment. On top of that, his shunt failed and he was experiencing extreme side effects from treatment of the treatment of the treatment. Yes you read that right. The cancer treatment caused the problem which led to another treatment that caused other problems which required more treatments.
The reality is the treatment for cancer is just as dangerous as the cancer itself. But in our case with no more options to treat his cancer, the treatment side effect is a blessing. 
And as ecstatic as we were to get this more positive news we are cautiously optimistic. We have been on this roller coaster long enough now to know the dips, twists and turns of the ride. With his type of cancer, cells could easily be sleeping and wake at any time. They have been known to sleep for much longer than other cancers - which is why we will never hear the words he is cancer free. Rather, we celebrate no active cancer. 
However, this tunnel has a bright light at the end and we are moving towards it, albeit slowly. 
Our day to day life did not change with the news it was not cancer. Emotionally a weight was lifted, however, we still look at our son and see a stranger. He still requires constant care, cannot walk or even roll over in bed at night and will receive steroid treatment for months for the radiation necrosis. 
These are the physical obstacles we manage daily, but there are far more emotional challenges. 
But we will face each day with a smile knowing we will now get to that day where things are better and Xavier is himself again. 


Sent from my iPhone

Sunday, 14 August 2016

A new direction of care

Symptom management versus disease control 

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 our subconscious talking. We were trying to block out what it could mean going home. That our boy may not get any better, but worsen. If we were in the hospital there is still hope he will get better. 

Now that we are home, it is stressful. We are constantly assessing and analyzing his every move. We are watching, we are doing damage control and trying to keep it together knowing his situation is black or white. 

We wait and he gets better over time or we wait and he gets worse. 

At this time all we can do is manage his symptoms. Even his surgery was not intended as disease control, but rather to relieve his symptoms. It was devastating to hear his surgery was unsuccessful. All it meant was that the very sick boy we took to emergency was going to come home the same very sick boy. 

I pray every day for a miracle. I tell myself every day to hold on to every moment with my precious boy and to live only one day at a time. My motto now is to live for the now, stay in the present and remember to laugh, live, love and to let myself feel everything that courses through my body as we endure this journey. 

We can do this together!


Friday, 29 April 2016

One year later...

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 and difficult road last spring/summer but Xavier is doing very well again. We have been blessed with an extremely strong and courageous boy.

But as always, there are lingering effects. And two of these things are particularly hard for me. I must pray a lot to find the strength not to blame myself.

I suffer every time Xavier has an irregular symptom. I panic inside. It's a battle not to let my mind go back to the very first time he was sick. I feel it took too long to diagnose him and fill with guilt about the pain he suffered while we tried to find out what was wrong. So now I immediately jump to the worst conclusion and do not hesitate to have the littlest thing checked out for fear of missing something terribly wrong again. But I also don't want to be that paranoid parent who takes their kid to the emergency department for a paper cut. It's a delicate balance of determining what's normal and what's not.

Other parents may not realize what a luxury it is to know your child's headache is just a headache or their stomachache is just a stomach bug.

Then there is the detrimental effect this has had on our daughter Mackenzie. The extent to which she has suffered is far worse than most know. Her personality has been shaped by her experiences and negatively affected her entire self-image.

I have been doing a lot of reading of material provided to us by our wonderful therapist about attachment trauma. It disturbs me to think she has this, but everything I read is bang on!

Unfortunately children who have  been abused or neglected can develop attachment trauma.
To have to admit Mackenzie was neglected is heartbreaking. It was never our intention; it was not consciously or maliciously done but rather a product of the situation we were given.

A child's brain is in a massive growth spurt up to age 2. Those early experiences are most influential in how their brain develops and circuits are wired. Unfortunately in Mackenzie's case, those years were extremely traumatic. She was often passed off to other loving family members, separated from her mom and dad for sometimes days at time while Xavier underwent the fight of his life. Her primary caregivers were at a distance. As positive and happy as we tried to be, a child senses your stress response.

Her behaviour pattern today strongly mimics that of a child with attachment trauma. Her personal beliefs about herself are skewed. Socially she suffers and has been viewed by her peers as being "weird." Her experiences growing up have been extremely different than many others which makes it hard for her to relate. Emotionally she struggles. Unable to recognize cause and effect and moral direction.

She is not a bad kid. She has a disorder that must be treated with care just like her brother's cancer. It takes patience and a team of people to treat her so she can become the best Mackenzie she was born to be.

I ask for your prayers for our family as we go for Xavier's MRI next week. Let there be no surprises (except good ones!) and time for us to continue healing from last year's experience.




Monday, 8 February 2016

Stop and smell the roses

Slow down. Stop and smell the roses, feel the rain, taste the air (although it may be harmful) and see the blueness of the sky.

More than ever now, we need to pay attention to these simple things in what has become an overwhelmingly complicated world. We believe we are making it better and in many ways we are; the medical breakthroughs, the conservationism and social justice.

 But in many ways we are also planning our demise. We have created an epidemic of depression; a mental health crisis.

And while our government has recognized the problem, the solution is not removing stigma or throwing money at the issue. These are Band-Aids. Blanket support systems are inadequate and insincere.

We need to address the root cause and accept we are our worst enemy.  Every day the pressures are mounting, expectations are rising and the pot is boiling.

The root cause is the unrealistic expectations we have sewn and society has cultivated.

We are perfectly imperfect. Stop pretending to be something you aren’t and start being who you were intended to be: a human being. God did not create us to be Him. He created us with freedom of choice and with the amicable ability to learn from making mistakes. Why would He give us this gift if we were not meant to fail?

And when we fail, we need to treat people like people. Somehow life has become an outward competition about everything. And the winners are splashed all over social media to make those who aren’t winning feel even more insecure.  We aren’t animals fighting over the last piece of meat. We are people with feelings.

Embrace your failures and empathize with your fellow peoples. Learn about them. If we understand more of what makes each other tick and why we feel or do what we do, we are building compassion.

I challenge you to be kind to others, encourage them and save your competitive attitude for the ball game.

I challenge you to slow down and reevaluate what’s really important to you. Appreciate the small things.


You are bursting with potential and although it may not fit in a cookie-cutter, hang on because your time is coming.

Wednesday, 13 January 2016

Medical appointment overload

Here it is now almost eight months since the horror of Xavier's relapse and severe meningitis and the pain still lingers.

Will it ever go away? Not likely.

Our healing is a road that never ends running parellel with our reality of managing an incurable cancer. It stretches across oceans, through that darkness of space, up to light where our Heavenly Father hears our cries.

Still I hear the sorrowful moans from my childrens bedrooms. Another bad dream I suppose, a nightmare that had come true.

We entered another barrage of appointments; each a reminder of this journey we call childhood cancer. The weeks before the next MRI are always the hardest. For all of us.

While some live their lives never having to step foot in a hospital with their child (aside from bringing them home after their joyous arrival) others see the walls of the hospital as a second home.
Rarely do we walk the halls of Mac without recognizing a familiar face. It is strangely comforting.

We live different.

I ask that you dont judge us until you walk in our shoes.
It is a way of life for us that I both praise and fear. It brings more joy than ever imagined and more pain than ever described.
You feel things you never knew existed. A blessing; a curse.

A life I will always be thankful for.