Tuesday, 4 April 2017

When you think you can't take anymore

That was me about three days ago. I was done. 

Over and over again I hear myself telling others how I am hopeful of Xavier's current treatment. I put on that positive attitude, smile and say it's going to be ok, it's just going to take time. I hear the words leave my mouth, but inside I don't believe them. It's a canned phrase now - you know the one people want to hear. 

They don't want to hear me say life really sucks. The days are painful, literally, having to carry around a 70 pound boy and up and down stairs. The nights are even worse when the emotional pain comes pouring out of all the little cracks inside where we tried to tuck it away during the day. All the fears, all the anger, and all the exhaustion. 

Three days ago Xavier said he forgets now what it even feels like to run. My now 7-year-old son who once took kickboxing and could keep up to his sister kicking a soccer ball around, hasn't been able to run since last July. Some days he can barely walk. It's devastating for me and I can't even imagine how he must feel. To have known what it was like to be a carefree kid and then to lose it all. To have experienced your independence and then lose it all. 

It's so easy to get lost in the negative of this situation. The journey has been so long and this time around there has been little reprieve of his symptoms since August. My stamina for this is running out and I need a recharge. We have all lost our shit at least once now; felt like giving up and walking away. 

But then God always has a way of giving you another perspective. That came in 3F cancer clinic. Week after week I see the same families, the same people, the same kids being hooked up for their weekly dose of chemo. But one in particular reminded me of Xavier when our journey just started. 

She is only 18 months old. She has a beautiful smile and big happy blue eyes. She loves to say hi to everyone. This adorable baby is a foster child. Her parents gave her up after her cancer diagnosis. They walked away. Now her foster mom is there every week giving this beautiful little girl a chance at life. 

When I heard her story the other day, my heart sank. How could someone walk away from their sick child like that?  As much as I know the struggles of raising a sick child, I couldn't help but think of all the wonderful, loving experiences this journey has brought us. 

Every hug is special. Every kiss goodnight is precious. We have learned how to love deeper, love stronger and ask for forgiveness. My heart would never have been as full as it is now. I see the beauty in the depth of understanding and breadth of feelings this journey has brought upon us. A blessing in disguise revealed by a random conversation with someone I had seen time and time again but never spoke to until that day I was done.  

God's timing is impeccable! 








Friday, 27 January 2017

Good for us both!

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 Feelings Lab

Christmas on steroids

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 suffer from mental illness, there is no on-off switch to make it go away.

No amount of money and no amount of gifts can make me happy. I don't need a fancy house, a flashy car or even a trip or two. All I want for Christmas is to wake up in my own home, in my own bed with my family snuggled in beside me. Unfortunately, way too many families will wake up on a cot beside one of their children in a hospital bed while the rest of their family wakes up at home without them.
I appreciate the importance of being together.


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!