Tuesday, March 8, 2011

He looks fantastic!

Life is good.
Today Mark and I got great news from Xavier's team of doctors at Mac. His tumour remains stable after eight months off treatment. His radiology-oncologist even went as far as saying he thought it looked like the tumour had even shrunk a tiny bit.
Everyone commented on how great he looked.
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.
Although they couldn't say we are out of the woods yet, they are optimistic. His next MRI will be in July.
We even saw his neurosurgeon again today. He didn't even recognize Xavier since he has grown up so much since his surgery one year ago. His hair was also a big hit.
It gives me a great sense of pride and joy to "show him off" to the doctors, who just one year ago, feared our baby would not make it. I can also see the pride in them, knowing that they had a hand in saving his life. We will be forever thankful to Dr. Gunnarson, Dr. Scheinemann and Dr. Whitton and Dr. Sighn.
I couldn't sleep last night as I worried about what today might bring. Again, our lives could have been turned upside down with just two words: new growth. My gut said he was fine, but deep down I still feared the worst. As I anticipated good news, I braced for the bad.
Once again, Xavier has proven he is a living miracle.
I often recall two statements made during this difficult journey: one I said as I drove to the emergency department at Brantford hospital the day Xavier was sent for a CT scan and the second said to me by my pastor while at McMaster while Xavier was in the operating room.
"I will not bury my child."
"He will survive this and fully recover."
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.

Friday, February 4, 2011

Twin love

Now that the twins are nearing two, I am finally starting to see them interacting more together in a positive way.
Up until this point they would interact -- but by pulling each other's hair, biting or just taking each other's toys away. The constant jealousy was clearly evident too when I would pick one up the other would scream and whine and cry and ...
But they do the sweetest things now. It is especially nice to see Mackenzie enjoying her brother around. For the longest time it seemed like she hated him, or at least, she hated sharing mommy with him. If she woke up in the morning before him we would spend some nice quality time together. But as soon as Xavier got up, she was miserable and would start crying at the first sight of him.
I think she enjoyed being an only child while Xavier was in the hospital. Although they are the same age (of course they are twins except Xavier is three minutes older) I kind of see Mackenzie as the older sister. Because Xavier has some catching up to do, Mackenzie is trying to help him out.
The other day she grabbed his hand as he was trying to walk. She did this multiple times as he attempted to stand up from sitting on the bottom stair of the staircase. She was truly trying to help him walk. It was so cute. She also likes to feed him.
On the rare occasion too, they will pass a ball or a car to each other. And as it has been for some time now, when one is upset, the other one gets upset too.
They also like to give each other kisses in the bathtub (Mark thinks it is weird) but I think it is really sweet to see them getting along so well.
I was worried they may never have a close bond, but everyday I see little things that show me how much they are attached.
It is wonderful to see. And it will be wonderful to see them walking side by side very soon. Xavier took his first steps on Feb. 2 (a year ago that day he was in 12-hour brain surgery). So now I have a much better thing to remember every Feb. 2!

Sunday, January 30, 2011


I can hardly believe it has been a year since our worst nightmare struck. It was a very dark time for our family, but here we are a year later with a happy, healthier Xavier and his busy twin sister.
There are so many emotions running through me right now that I don't even know where to begin. As I reflect on the terrible news we got this time last year, I also think of how lucky we are today that he is still with us.
It was Feb. 1 when our family started what (I hope) was the most difficult journey we would ever have to face - our son's cancer diagnosis.
On Feb. 2, Xavier underwent 12 hours of brain surgery to remove a complicated tumour that was wrapped around his brain stem. On Feb. 10 (my birthday) we learned he was fighting an aggressive cancer, known as anaplastic ependymoma.
Unlike anything I have experienced before, this was the biggest challenge of my faith and life as I knew it. I was a true believer in that everything happens for a reason. But I could find no reason why an innocent baby had to struggle through his young life. That was then. This is now and I still believe that everything happens for a reason.
Through this unbelievably tough journey, I have met some great people, found out who my true friends are and built an unbreakable bond with my husband and family. I see things differently now and have more empathy for those struggling through difficult times in life. I know what it feels to be depressed. I know how it feels to love unconditionally. And I know how it feels to believe--to believe in the greater good, no matter what the situation may be.
I remember this month last year as being the worst time ever in my life. But as I reflect on those early days in the hospital, I see things differently. On Feb. 2, I learned that miracles really do happen. God proved that in the operating room that night. Thank you God for all the blessings you have given my family.
Xavier is doing very well these days. He is not yet walking, but is well on his way. His speech is coming along as well and he is eating better these days. However, he still gets much of his nutrition through a feeding tube. We have gone from administering seven medications a day to only one. His last MRI in November showed no new growth and we are expecting the same result after his next MRI on March 7.
It is always in the back of my mind that at any time we could be back to where we were this time last year. And as much as I want to believe the cancer is gone, we don`t know. We won`t know for some time. But in the meantime, I am going to treasure each and every day.

Days after Xavier was admitted to hospital, I started writing in a journal. Until tonight, I have not been able to read what I wrote in those grief-stricken days after his surgery. Reading it takes me back to those horrible days, but it also gives me a sense of how far we have come today.

Feb. 6, 2010
On the road to recovery
Xavier has been in the hospital for six days now and in recovery from his 12-hour brain surgery. He is still so fragile and is being closely watched in the ICU at Hamilton hospital. He is having trouble sleeping and does not want to be alone. When we hold him he is much more content. Today he had another CT scan because his blood pressure increased and heart rate dropped signaling possible pressure in the brain.

Feb. 9, 2010
Yesterday I brought Mackenzie in to see Xavier. He almost smiled. You could really tell he missed his sister. He was so calm having her around. She wasn`t as excited to see him, but in the morning when I got her up she looked at his empty crib. That is really tough to deal with when I am home. I just don`t know how to do it with one. I`ve always done it with two and that is how it is supposed to be -- and will be!
We met the other surgeon this morning... she said the pathology results will likely be back this afternoon. My heart sinks a little knowing what we are potentially and most likely going to hear. It is unbelievable to think an 8-month old has cancer. My poor little guy.

Feb. 10, 2010
Xavier smiled today for the first time since his surgery! Today is my birthday and his great big smile was the best gift ever! He was so alert and so playful.

Feb. 16, 2010
Been a rough ride these past few days. On Feb. 10 we were told Xavier had a rare, aggressive cancer. The prognosis is not good, but doctors want to try chemo and possibly radiation when he reaches age one. This was a devastating blow, one we knew was coming but didn`t want to hear. To think of losing my little boy is indescribable, so much pain right now. He doesn`t deserve any of this, he is just an innocent boy who could do great things. But on a brighter note, Xavier has been smiling so much every day. He even giggled too. It is great to see the old Xavier coming back to us even if it is only for a short while. The chemo will wipe him out. I hate to see him go through it but there is a chance -- we have to take it.

And take it we did. Xavier is a fighter and a survivor!