Monday, 31 March 2014

A Deep Breath

The worst is over. Those words are like the soothing sound of a steady rainfall on a warm summers eve.
After almost two weeks of anxiety and fear of Xavier's brain surgery, I can finally relax. It is over and he is doing amazing.

This almost 5 year old kid has been through more than I have with 26 years on him. And still, he smiles, laughs and plays his little heart out. Not even a week after surgeons opened him up again, removed scar tissue in the 4th ventricle of his brain and took out a vertebrae in his spine, Xavier is walking, talking and just being a kid again.

This past week has been a roller coaster of emotions, but above all has once again shown me how strong my little boy is ... and how strong I can be when I have to.

There were moments when I thought I couldn't do this again - spend nights at his bedside in hospital, watch him suffer and see his painful scars. But with so many amazing people around me, and the extraordinary care by doctors and nurses at McMaster, I did it.

The experience, albeit horrible, wasn't like last time. This time when we left the hospital we knew we didn't have to go back for treatment. It was done.

Now that I have finally gotten the chance to take a breather I wanted to jot down some of the most memorable moments like the 20-minute tantrum to put a hospital gown over his pjs and when his big blue eyes lit up at the mention of popsicle!

1. The gut-wrenching, tear-jerking moment when Mark walked Xavier into the operating room and Xavier looked at me and said mom, I love you.

2. Sitting in the OR waiting room that we spent 12 hours waiting in 4 years ago to realize nothing had changed except a couch was replaced and the pop machine moved to a different wall.

3. Seeing the surgeon come into the OR waiting room and take us into the little room off to the side. This room is where we were told 4 years ago his tumour was wrapped around his brainstem making surgery extremely dangerous. Instead, this time, his surgeon was smiling and you could feel the high he was feeling after completing a successful surgery. They had found a complete blockage of CSF in his brain and were confident this would solve all of his symptoms.

3. b. Learning that Xavier had asked for his bee blankie after waking up before asking for mom or dad!

4. Running into the same staff that were involved in his care 4 years ago.. and them still remembering Xavier. One even came into ICU after reading his name on the surgery board as they were concerned why he was back in the hospital. Amazing! They treat so many children but still remembered him.

5. The feeling of sadness when Xavier was transferred out of ICU and into the chemo ward. So many memories came flooding back as we saw the nurses in blue gowns administering chemo drugs to babies, young kids and teens. I felt so bad for those families, knowing exactly what they must be going through.

6. Overhearing two younger parents in the washroom complaining about drama with their baby daddies and how they want to fight this person and that person. This almost made me sick to hear... their child has cancer and they are so consumed with their own lives they can't concentrate on what their poor child must be going through.

7. Xavier walking!

8. Going home!  

There are so many moments I could list including the night I spent with Mackenzie at Ronald McDonald House ...I missed her so much and the strength and maturity she has shown during this experience should be rewarded! She has been an amazing sister to Xavier since he came home.

In three months Xavier will have another MRI to determine how successful the surgery was. I am not worried. I know they did a great job and by then this will all be a distant memory.

I am breathing easier tonight.

Monday, 24 March 2014

Complacency and Invincibility

Today my mind is working against me.

We are two days away from Xavier's surgery and I find myself thinking about all the what ifs. This painstaking process (and yes it's a process of digesting and accepting what we are going through) is consuming me with horrifying thoughts and vivid images of what could happen while Xavier is on the operating table...again.

What if something goes wrong? What if the worst happens?
My logical self says this is not worth thinking about. It will never happen. Or we'll cross that bridge when we get there.

But that fear monster inside me argues... how do you know? I never thought it would be our child who got cancer. But it happened. So I need to prepare myself, so I can deal with it. (I am a control freak, can you tell?)

These thoughts pass through my mind as I watch the most recent developments in the missing Mayalysian plane: how many of those passengers passed off the routine safety messages, tuned out the instructions because in their mind, it would never happen to them.

Unfortunately, in this case, those safety procedures would not have saved them. However, there will be a time when these safety procedures will safe a life.

The same rings true when planning for disasters or even fire safety plans: "It will never happen to me."
Well, it can and it does.

I am not saying we need to live in constant fear that something bad could happen or consume ourselves with what ifs. But we need to be cognizant that we are not invincible.

We need to listen and actively engage in the safety education that's out there; Appreciate the information we are handed to prevent, mitigate or prepare for such things.

I have learned the hard way that bad things can happen to us all. We can choose to pretend it won't or we can come to terms with it and REALLY appreciate the current state of our lives. Because in an instant -- it can be gone like the lives of the 239 people on Flight 370.

Don't take things for granted. Don't be miserable and above all don't judge -- because you never know what that person may be going through. Live for today.

Monday, 17 March 2014

In a perfect world this stuff wouldn't matter

As our family anxiously awaits Xavier's surgery date, we are struggling with the range of emotions associated with another hospital stay.

Unfortunately, the sad and most stressful part of it all is the feeling of having to rush back to work. Not because we want to, but because we have to.

Even with the latest addition to Employment Insurance for parents caring for critically ill child, it is restrictive and difficult to qualify (like most programs to get money from the government). And it is only up to 55% of our wage (although I would take what I can get).

Then there is Short Term Disability through work. Again, very challenging to get and the constant inference from the insurer is almost not worth the effort of applying. Plus, it is not my disability. It is my son's. I am not sick. However, I could argue the emotional toll it has on my psyche affects my productivity at work.

And the last option: to use up all of my sick days, all of my vacation days and all of my leui days to ensure I am paid for my time off. But this option leaves me no time to get sick or be with my family when everyone is healthy.

I am not interested in abusing the system, but unfortunately because some people have chosen to do just that, the rules are strict.

Taking a month off with no pay to be with my son while he recovers would be a huge financial burden for our family. I admit, it's our fault to have put ourselves in such a tight position with money. After the first tragedy with Xavier it would have been prudent to save and nice emergency fund. However, we were also recovering from nearly a year of both my husband and I not working to be with our sick child.

And do I regret our family vacations? NEVER. As important as money is, the time spent together as a family somewhere away from the stress and reality of his sickness, is PRICELESS.

But the point of this entry isn't to sob about our money problems (because everyone has them), but rather to highlight the unfortunate reality that there are many others put in this difficult situation. When a child needs surgical invention for a serious medical problem or is very ill, a parent should not have to worry about short-term money problems.

It would be nice for employers to step up and say, "Hey, we are behind you and will support you. Take a few weeks (up to 3 weeks) and we will continue paying you during this difficult time."

I know I know, only in a perfect world -- the one I often daydream about -- would this actually happen.

Aside from figuring out the finances, there is also the logistics of the situation. Only one parent can stay overnight in the hospital. Mark and I plan to share this responsibility but where will the other parent go. Especially for night one neither of us would want to be far incase of a complication. In this case, we are hoping there is a room available at Ronald McDonald House by McMaster. And this accomodation wouldn't break the bank. Having to book a hotel while on a tighter budget would not be feasible.

Then there is where our daughter will go. Sitting for hours at a hospital would not be appropriate for a 4 year old, but we want her to feel involved. She is already saying she is going to miss her brother during his hospital stay.

However, these things are minimal compared to dealing with the emotions of a 4 year child who has been told he is going for brain surgery and another 4 year old who knows her brother is going for brain surgery.

Neither can fully understand the situation and while they appear normal during daytime play, subtle signs and frequent night wakings are a clear indication this is weighing on them both.

I would like nothing more than to take away their fears and concerns.... and pain. It's a difficult journey. I am scared too, and feel sick to my stomach thinking about it and everything that he and her have gone through during the inital diagnosis.

But we are a damn tough family and although it's not a perfect world, we will make the best of what we're given.

Thursday, 13 March 2014

Surgery a must

My little superhero will have yet another chance to show off his super strength with a second brain surgery scheduled for this month.

Doctors informed us earlier this week that all of his symptoms are related to the fluid-filled cysts growing in his spinal cord. The cause: an obstruction in the flow of CSF in his head, primarily (or at least neurosurgeons suspect) in the area of his previous surgery.

It has been 4 years since he was opened up and a large cancerous tumour was removed from the back of his brain. But the memories and emotions of that initial surgery still feel like it was yesterday.

However, this latest news is not all bad. In fact there is a lot of positive.

First and foremost, it is NOT the cancer or any regrowth of the remaining tumour tissue left on his brainstem. He is still CANCER FREE (that sounds so good to say!)

Secondly, the surgery is routine. Albeit there will be an increased risk because the area has previously been operated on, but the surgeon is familiar with Xavier and his initial surgery. She has followed him ever since. (Dr. Singh is an amazing woman and we can't say enough about her expertise at McMaster Children's Hospital).

And lastly, the surgery should alleviate most, if not all, of the symptoms Xavier has been having recenly.

It was four months ago during his last MRI that the cysts had somewhat increased in size. At that time he was not experiencing any symptoms - so nothing was recommended.

Between then and now, multiple symptoms have presented. With no treatment, his condition could eventually affect his mobility.

We expected something (surgery is the only option) would have to be done. We just didn't expect it to be this soon. However, he is young and will bounce back quickly.

I am scared for him. But I know he can do it. He has endured worse and so have we.

The five-hour surgery will keep him in the hospital for about five days. And doctors are confident, pending no unforseen complications, he will have a full recovery and return to school within a few weeks.


Tuesday, 4 March 2014

On tonight's menu: FEAR

Up until about 2:30 today, I was calm.

It was then that I had a conversation with the nurse from Xavier's endocrine clinic about some symptoms he has been having.

For days now he has been complaining about a headache - most of them first thing in the morning. Of course my first thought is the worst, given his history, this would only be a natural reaction. Pushing that thought aside to avoid jumping to conclusions, I pondered what else could be causing him these headaches.

I tested his blood sugars a couple mornings with my tester and found his sugars seemed a bit low to my standards. So, I told myself, thats all it was. Still cautious, I sent my concerns to his team of doctors at McMaster.

He has an MRI tomorrow, so no worries.

Until today when the nurse said his sugars were ok for a child his age and the headaches were concerning - especially since having gone back on the growth hormone. I told her we have an appointment with his endocrinologist next month:

"That's not soon enough. We need to see him this week."

My heart rate increased and I could feel my body warm up and my mind go to dangerous places.

This is our life. Fear.

I hate to cry wolf everytime Xavier has a symptom of any kind. But we just never know. It's an ongoing battle to try to live normal. Sure, the tumour is gone, the cancer treatments or over, but that experience has scarred me for life.

Now there's all the therapy, the treatment required to treat the effects of the initial treatments.

I am worried. I don't want to be worried, because there is a good chance it could be some simple explanation and an easy fix. But what if it's not?

It was just 4 months ago this same scary feeling fell over me. That's when doctors needed a closer look at his head and spine after his initial routine MRI. Turns out what they thought might be another tumour was the Syrinx cysts in his spinal cord. Still concerning and something to be followed, but we had no reason to act at that time.

Now here we are again. I just want to be free of this pain, this fear and worry. I want my little guy to not have so many doctors appointment, pokes and therapy. I don't want to have to tell him he had cancer.

And it's times like these, when I see a symptom present, that I struggle with how to handle it. On one hand, I want to rush him to the doctors and get it assessed ASAP. I am troubled with the guilt of not finding out about his brain tumour for months. What if I had only done this or done that sooner... I don't want to wait, but I also don't want to be a hypochondriac.

I will go home tonight and play with my kids and pretend like there is nothing wrong. But inside, I will be screaming.

This is my life now. But deep down I know whatever happens, it's nothing we can't deal with.