Tuesday, April 30, 2013

One Year Ago Today


The day that changed our lives forever. April 30, 2012 we took Liam to the emergency room at the Alberta Children's Hospital. Somehow the triage nurse "just knew". She immediately got Liam through to get a CT scan, and that day we found out Liam had a 4 cm tumor at the back of his head. The neurosurgeon cancelled all her surgeries the next day to make room for Liam's marathon surgery.

I cannot think about that time without feeling sick to my stomach. There are large chunks of time in the last year that are just a blur. I still often wake up and wonder if this all really happened.

I can't say how much I hate cancer for doing this to our 3 1/2 year old boy. I hate how awful cancer treatment is. Liam is facing a lifetime of tests and medical issues as a result of chemo and radiation.

But, having a lifetime of medical issues... means being alive. Even for all the awfulness, I am still so thankful for so many things. I am so thankful that Liam could make it through two major surgeries, and be doing so well. I am so thankful that Liam can run and jump and be a kid. I am so thankful for the amazing care we had. There are so many amazing healthcare professionals, volunteers and child life specialists that go above and beyond for our kids. We had many stressful points and bumps along the way, but treatment is now over. And we got to celebrate the year being over with an amazing wish trip for Liam.

Thank you everyone for everything over the last year. From Facebook messages, cards, gifts, food, donations for the playset in our backyard, to helping out with Madison. I just can't thank everyone enough, we are so grateful for all the support we've had over the year.



The top left picture is Liam on April 30, 2012 when he was admitted to Unit 3 to prepare him for surgery the next morning. He didn't know what was happening, but he knew things were not right. The picture on the right was taken yesterday.

Saturday, April 27, 2013

Day 5 Wish Trip - Legoland

The kids loved Legoland! Liam is a big fan of Lego, and the Lego people. He has a big collection of them, from when he was getting his radiation treatments. When he got to pick a prize from the basket after his treatment, for a while he was picking Lego people almost every day!

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Look Stacey, I got surfers! And Madison got a Snow White Lego.

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Liam got a bit scared on some of the rides at Disney, there were a lot rides at Legoland that were perfect for him. Which worked well, since they were ones that Madison could go on as well. It appears as though she will be our thrill seeker!

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Day 4 Wish Trip - Disney Hotel & Downtown Disney

We went for a character breakfast at Goofy's Kitchen at the Disneyland Hotel. It was very nice of Goofy to greet us at the door!

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 It was the most amazing brunch, they had something for everyone. They had everything from mickey waffles, eggs, peanut butter and jam pizza, hot dogs to ice cream.

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As we ate breakfast, different characters came through to meet the kids and take pictures.

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We wandered around Downtown Disney and picked up a few souvenirs. This is Madison with her new Minnie Baby and jewelry. Liam got a Mickey Lightning McQueen and Goofy Tow Mater.


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Friday, April 26, 2013

Day 3 Wish Trip - Disneyland

The kids were ready for another day at Disney! We spent the second day at Disneyland, we spent most our time in Mickey's Toontown and Fantasyland. We did manage to made it through most of the park.

This day was filled with meeting Disney characters. The kids were thrilled to meet Pluto, Goofy, Minnie and Mickey. Liam was happy to talk to them and give them big hugs (despite the awkwardness of hugging these huge guys!). Madison was a little more hesitant, but was warming to them.

Merida and the bears from Brave were awesome!

IMG_4911.JPG by Troy and Karla Gould

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Mickey's Toontown is perfect for the kids at age 4 1/2 & 2. We toured Minnie and Mickey's houses and met them both. The kids got autographs from all the characters they met.


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No one told us that Mickey's hands were around Liam's neck :-)

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We did some rides, the kids loved Peter Pan's Flight, Buzz Lightyear Astro Blaster and It's a Small World. The kids did so well, they even lasted to watch the Mickey's Soundsational Parade at the end of the day.

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Day 2 Wish Trip - Disney California Adventure

There was no stopping, we immediately had to go to Radiator Springs! For those who haven't watched the Cars movie, Radiator Springs is the town the movie takes place in. A whole themed area of Disney California Adventure is a replica of Radiator Springs. For Cars fans, it is amazing. Liam was mesmerized at seeing Flo's V8 Cafe, the Cozy Cone, etc.

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The first thing we did was go to the meeting spot for Lightning McQueen and Mater. McQueen was there first, when it was our turn to meet him, Liam ran up and gave him a huge kiss. That was priceless, and unexpected so I did not have the camera ready! A few hours later we went back to the meeting spot and met Mater as well. Mater did not get a kiss, but he got a big hug.

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Liam's first ride was the Radiator Springs Racers! Liam loved it, although he got a bit scared at a few points during the ride!

We had lunch with the princesses at Ariel's Grotto. Both kids thoroughly enjoyed meeting all the princesses.

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We did quite a few rides, Toy Story Mania, Monsters Inc (Madison's favourite), Luigi's Flying Tires.

We caught the Disney Junior Live show, which was super cute for the kids. Liam sang out loud along to all the songs. The show featured Mickey Mouse Clubhouse, Sofia the First, Doc McStuffins and Jake & the Neverland Pirates. Liam was very happy to meet Jake from Jake & the Neverland Pirates (in his pirate costume, of course)!

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We managed to stay the whole day and saw the Pixar Parade, more of the characters Liam loved. The parade had the Toy Story and Monsters Inc characters, which were a hit with Liam and Madison.


Day 1 Wish Trip - Travel to California

It was an early morning to catch our flight! But, the kids went to bed a bit early and were very excited for the trip. Even Madison was excited, more than we thought for a 2 year old.

Look at my wings pin! by Troy and Karla Gould

John Wayne Airport by Troy and Karla Gould

The kids were super excited about a room with a bunk bed. Of course, this excitement can't go without a bit of an incident. Liam fell off the bunk bed ladder and skinned his forehead.

Before falling off the ladder... by Troy and Karla Gould

Off to bed to rest up for Disney California Adventure!

Thursday, April 18, 2013

Liam's Wish Trip

We had an amazing trip to California! The highlight of the trip for Liam was visiting Radiator Springs at Disney California Adventure Park and seeing all the familiar sites from the Cars movie. He was especially excited to meet Lightning McQueen and Tow Mater. When we saw Lightning McQueen, Liam ran up and gave him a big kiss!


We visited Disney California Adventure, Disneyland, Legoland, San Diego Zoo and Sea World. 

Thank you Children's Wish Foundation for this amazing opportunity! It was a great time for the whole family.

I will post more details and pictures soon!

Friday, April 5, 2013

The "New Normal" for a Brain Tumour Parent

I found this blog posting, I can't believe how accurately it describes the scanxiety that goes along with having a child with a brain tumour. If you wonder what consumes my mind every single day:

http://themourningafternatasha.wordpress.com/high-scanxiety-portrait-of-a-brain-tumor-parent-on-the-brink/

April 30 will be 1 year from diagnosis. Pretty much every day, I am reminded of the stress of a year ago. Remembering Easter and Liam's symptoms the months leading up to diagnosis. The many tests Liam had to go through. Then that dreaded day the ER doctor said, "your son has a brain tumour".

Tuesday, April 2, 2013

Feeling Well & OT Sessions

Liam is feeling well and doing well. Having significantly less appointments is good for us all! Some days Liam is more tired, some days he has more energy. I have read that for some kids the fatigue can last years, so we'll just hope for the best.

Liam started his OT focused sessions this week. Until now, Liam's OT has mainly been suggestions of things to work on at home to build strength in his hands. This has been great, and has helped Liam come a long way with his fine motor skills. We decided that the most helpful would be to focus on Kindergarten prep activities, such as printing and scissor skills. They also have a student that is going to be working with Liam for 4 weekly sessions who has previous experience working with preschool kids.

Liam is not quite able to print letters. In our session, they watched Liam do some colouring. Liam seldom picks up the marker/crayon and holds it "correctly". I realized in the session that I always put the marker/crayon into position for him. They put a sticker on the web of Liam's hand to help him know where to position the marker. This is going to take some practice for him to do by himself.

When Liam holds the marker correctly, he holds it well. There are a few things Liam does that we need to work on. Liam tends to use his whole arm when he colours. And when he colours at the bottom of the page, he hooks his wrist to reach down.

I am happy that Liam is able to get this help in these areas. I know that some kids aren't keen on colouring at his age, Liam is in that same boat. But with the damage to Liam's brain (area affecting his motor skills), it is going to take Liam longer to gain the same skills. I'm happy to be working on these things now, and do small bit of work on them at a time. I hope this help will prevent Liam from getting frustrated, as that will just lead to him not wanting to do it.

Liam's Wish Trip

We have our wish trip booked! We are going to Disneyland for Liam's wish to meet McQueen & Tow Mater. We are also going to Legoland, Sea World and San Diego Zoo.

A huge thank you to Children's Wish Foundation of Alberta. It is really a huge deal to be able to have a family holiday and give Liam such a special gift.

We received gifts and trip details from Children's Wish this morning. The kids are beyond excited!