Tuesday, December 3, 2013

9 Month Post Treatment Scans All Clear

Liam had his MRI under anesthetic this morning. He was not allowed to eat this morning, so he was very grumpy! He ran around the house yelling "where did you hide my Cheerios?". We pulled out an emergency stash of Lego men for distraction. I had to carry him to the car because he wouldn't go, then I plunked the iPad into his hands.

Everything went smoothly at the hospital. Liam really fought the anesthetic though. He knows that it makes him "wobbly" after and really didn't want it. They use a mask with gas first, then put the IV into his hand. We keep talking about doing it without anesthetic, but the MRI takes around 1 1/2 hour to do his head and spine. That is a long time for him to stay still. They may not get the details that we want if he moves around. They use contrast every time, so he has to get an IV, might be just as well that he's put under for that.

Liam woke up extremely grumpy from the anesthetic today! He's not usually this grumpy. The nurse offered him a stuffy, play dough or stickers and he refused all of them.

I was better able to smile through Liam's grumbling and crying on the way home, because I already received an email saying the preliminary results are all clear!!

We have our clinic appointment on Monday, so we'll talk to the doctor then. It is SO awesome that they can take a look and give us a heads up so quickly. 

Next scans again in 3 months. Nice to not have this on our mind for Christmas.

Wednesday, November 27, 2013

MRI Postponed

Liam's MRI is postponed until next week because he is sick. There is additional risk with anesthetic when you are sick, so we will wait.

Monday, November 18, 2013

9 Month Post Treatment MRI

As time goes by, we start to feel a little more "normal" between MRIs. We almost feel normal, then 3 months passes and the MRI reminds us of how life is not normal when someone in your life has cancer. Every time it takes time to recover from the emotional exhaustion of the tests and waiting for results. Cancer is evil, and having it return is devastating. (For medulloblastoma, the survival rate of relapse is less than 5%) Liam is doing so amazing, I wish we could say we were "out of the water". We are still in the highest risk time frame, hence why MRIs are still every 3 months. Once we have passed the 2 year mark, we can breathe slightly easier, and MRIs become less frequent. At 5 years out, we'll be much more relieved.

I got the confirmation call from Diagnostic Imaging today, so scanxiety has officially kicked in. Liam's 9 month MRI is next week. We are happy that we got a morning appointment, since he has to fast before the appointment. The 9 month follow up does not include a lumbar puncture.

Sunday, October 20, 2013

One Year Ago

One year ago today was the last day Liam had chemo. Although, the end of treatment wasn't until Jan 29, 2013, the end of 6 months of chemo was a huge milestone. October 31 was Liam's last day on unit 1. He spent 86 nights at the hospital between surgery and chemo. 

When I asked Liam how he felt being in the hospital on Halloween last year, he told me he was sad because he missed his sister. No doubt he did, he was in the hospital a good amount of the last 3 months.

Liam had chocolate cupcake on his face in the picture. It was one of the short times he did not have his NG tube during treatment.

Last week we had another touch base with the neurosurgeon. After finding out Liam is having double vision, we had to discuss if this was a symptom of the hydrocephalus (pressure on his brain). Since Liam is still on the cusp of having to do something about the hydrocephalus, the double vision was another concern. The good news is that the type of double vision Liam is having is not generally caused from pressure from hydrocephalus. The double vision is likely a side effect of the surgery. We are waiting on an appointment with the ophthalmologist to discuss what to do. They'll measure the hydrocephalus again in the next MRI already coming up next month.

Liam starts getting his immunizations this week. He can't get any live vaccinations until 2 years out. This week he'll be starting over with all the dead vaccines. After all he's been through, Liam fights very hard with every little medical thing. I'm not sure how the nurse is going to give him 4 shots, I'm sure it will cost us in more bribery toys!! I'm having a flashback to the last NG tube placement where Troy and a male nurse had to hold Liam down, while another nurse did the NG tube.

Sunday, October 6, 2013

Thank You!

Thank you everyone who sponsored Liam for the Wishmaker Walk for Wishes, Liam raised $1,395!

The kids just LOVE Roary from Children's Wish. There were other characters there that day as well, and a bouncy castle, ice cream candy and more. It was a very fun day for the kids.

In the pictures, you can see Liam has his own Roary, who came to walk with us. All kids granted wishes receive their own Roary. As Liam's wish was to meet Lightning McQueen & Tow Mater, he wore his Lightning McQueen racing suit.

A chilly start to the day ended up being a gorgeous day for a 5K walk. Thanks to our friends who walked with us, a fun day for all!

Thank you everyone! It's great to know that we are a small part of helping grant other kids their wishes.

Sunday, September 22, 2013

Wishmaker Walk for Wishes

One more week until the Wishmaker Walk for Wishes! A huge thank you to everyone who has already sponsored Liam!

As you know, we had an amazing wish trip in April. It was an amazing way for our family to have a wonderful experience after everything we had been through the year before our trip. Children's Wish does everything possible to make the experience very special. We'd love if you help us pay it forward and give other children and their families this special gift.

Liam's fundraising page:

Or, if you want to walk with us, please join our team! Here are the details:
Location: Calgary
When: Sunday, September 29, 2013
Eau Claire Market
Address: 200 Barclay Parade SW
Registration Time:
Walk Time:
Celebration Time:
Click here to join our team: Walk with Team Gould!

Childrens Wish on Facebook

Lots of Updates

Liam started Kindergarten! It's a big change for all of us to all of a sudden have a routine, we haven't done the same thing every day in a long time. On the first Friday, Liam commented that it was "over" he thought Kindergarten was a week like camp! Liam says he doesn't want to go to school anymore. But he goes to school fine, and talks about how much he loves all the activity centres. The teacher lets us know what they are learning, for example this week is triangles. He walks around pointing out everything that is a triangle.

We had our first meeting with the teacher. Liam is slow to warm up to people and new situations so it took a couple of days for Liam to speak to his teacher. Liam likely will qualify for some in class OT to work on his pencil skills. He's come a long way, but I want him to get some extra help to continue his progress. He may also qualify for in school PT. In gym, the teacher asked the kids to hop 12 times in a row, and Liam was the only kid in the class who did it!

Appointment with Oncologist
We had our 6 month follow up appointment with Dr Lucie. At this point, appointments are pretty fun and relaxed after having a clean MRI and lumbar puncture. They did the usual neuro tests that they do with his physical exams. All Liam's blood counts are very good.

To everyone's surprise, the hydrocephalus has decreased slightly. After increasing every 3 months since December, they were expecting a trend of increase to continue. Thankfully we don't have to face surgery or a shunt for now. It is still more fluid than "normal", but he may just adjust to that level and we just hope for no more increase.

Liam has gained weight for the first time since diagnosis April 30, 2012! (not counting days of steroids with temporary weight gain)

Sept 9, 2013 16.9 kg/37 lbs and 106.5 cm
May 13, 2013 14.9kg/33 lbs 104.3 cm/3'5"
May 23, 2012 15.2kg/33.5 lbs 99.3cm /3'3"

Liam is eating more food, but has only added a couple new foods to his repertoire of 10 foods. He is still just eating the same things every day. But, we are not adding whipping cream and oil to his foods any more, it is positive that he gained some weight with what he is eating. Many kids will take appetite stimulant, so it's great that we haven't had to do that.

To give you an idea about how resistant Liam is to new foods. We are always trying, with no success to get him to try something new. No amount of bribery/reward has any effect. But, we did have success recently, we decided to try to get Liam to try pizza. Before diagnosis, Liam would eat sausage and cheese pizza. We got sausage and cheese pizza (nothing else), and explained to Liam that he has eaten it before. We picked a tiny piece of sausage off of the pizza. Liam spent 5 minutes looking at the sausage, with a few touches to his tongue. After 7 minutes, he took the tiniest bite possible. After 10 minutes, he ate half of a tiny piece of sausage. After 15 minutes, we cut a tiny piece of the pizza crust and he ate it with the sausage. In the end, a HUGE success, he actually ate a few bites of pizza!! It was a big surprise to us that he tried it. We have no idea what factors were aligned to get him to try it that day.
(For anyone who knows Daniel Tiger, we've watched the episode on trying new foods a million times!)

When doing the neuro exercises, Dr Lucie observed Liam doing his head tilt still and suggested that he should get checked for double vision. We went to an optometrist and sure enough he has an eye misalignment, which leads to double vision when he's tired. He tilts his head to compensate. (not uncommon with brain tumours, may be due to the pressure on his brain) It wasn't conclusive (he lost patience with the tests), but it also appears that he may not be able to see 3D. 

The news I hated to find out is that Liam has to be re-vaccinated for everything. Initially we were told that Liam did not have to be re-vaccinated, but the information was based on a different protocol. We got the info from the right source, and the conclusion is that he has to have all of vaccinations done again. He's going to lose his mind getting this many needles. How nice it would be if Liam could just have some medical free time.

Monday, September 2, 2013

Wednesday, August 28, 2013

Prelim Results All Clear!

Preliminary results of the MRI and spinal fluid is all clear, nothing questionable. I can almost breathe now. We have to remember it is preliminary, but this is very good.

Tuesday, August 27, 2013

Tests Done

Liam got into his MRI a bit late today, so we are finished much later than previous days. Liam had a full head and neck MRI with contrast, lumbar puncture and bloodwork, all while under anesthetic. They told us everything went smoothly.

Leaving the hospital at 4:30, after Liam woke up from his anesthetic meant the hospital was a ghost town! Apparently we'll be waiting until tomorrow or the next day for results.

Liam's biggest issue is that he said the band aids over the IV sites hurt. No headache or nausea so far. It looks like they had some troubles getting his IV, both hands and his foot are poked.

Liam is drowsy, but happy and playing and wants to get a Happy Meal on the way home.

Tuesday, August 20, 2013

6 Month Post Treatment Scans

It has been a great summer for us, lots of fun in the sun in the Okanagan. Liam starts Kindergarten in a few weeks!

Unfortunately next week Liam has his MRI, lumbar puncture and bloodwork. Nothing like having that looming to take away from everything else. At least Liam doesn't worry about it, he still doesn't understand or ask why he has to go for sleepy medicine to get "pictures of his head" taken. We just hope that the lumbar puncture goes better than last time. He had about 24 hours of headache and vomiting, no fun.

Looking forward to having the tests over with.

Saturday, July 27, 2013

Camp Sunrise

Liam had the best week at Camp Sunrise. Camp was in Calgary Monday through Wednesday from 9-3. Thursday, the kids took the bus out to Camp Kindle (just west of Water Valley, 1 hr NW of Calgary) and they stayed overnight at camp Thursday night. We went out to Camp Kindle Friday morning and they held a family picnic for us on Friday at lunch. It was wonderful for us to be able to talk to the counselors and hear stories about the week. It was also great to catch up with some of the oncology nurses who work at the camp. We spent a LOT of time with some of them last year, it's nice to see them outside the hospital.

The camp is put on by Kids Cancer Care Foundation of Alberta, and cannot even start to say how wonderful the camp was. The camp counselors were absolutely the most wonderful people. Liam is not quick to warm up to people, but took no time to talk to and cuddle with the counselors!

If you've shaved your head for Shave your Lid for a Kid, camp is one of the areas the fundraising goes to.  A huge THANK YOU to everyone who has participated or donated, etc.

These kids share a bond through experiences that thankfully most kids don't have. In a world where noodles, buttons, pokes, heparin flushes, chemo, hair loss, sleepy medicine and transfusions have been a big part of their lives, it's wonderful for them to be around other kids that understand.

On a side note for those interested, research was done recently which showed that camps for kids with cancer is not a luxury, but a necessity:
Research reveals the healing power of cancer camps

Because cancer affects the whole family, siblings are also welcome to go to camp. Next year Madison will be old enough to go to the same camp as Liam, they will love that!

Monday, July 22, 2013


Liam's hair has grown so fast, it was time to clean it up. Unfortunately, Liam got a botched hair cut, we took him back to get it fixed and they ended up just buzzing it off in the back.

I was not impressed, but thankfully it will grow back fast again. It's a bit of a reminder about how many stitches Liam had from surgery! Before his haircut we could hardly see the scar anymore. Because Liam can't see it, the scar doesn't bother him at all.

Wednesday, July 17, 2013

Everything Going So Well

Liam survived all his birthday parties :-). A weekend of rest was needed for all of us!

Liam is doing so great. He seems to be feeling better all the time. To see him playing with other kids and having so fun is just so wonderful. When we told Liam he was going to take swimming lessons, he told us that he wouldn't go... but we managed to get him to try the lessons. He did really great and even put his face in the water, this is huge for him. I hope that getting more swimming time this summer will get him more comfortable.

Liam's eating is odd. We were struggling with getting Liam to eat more at a meal or eat any snacks. He was eating 3 small meals a day. Then a few weeks ago, things changed. He started to eat more frequently... But started to eat the same food almost all day long. First, it was toast with Nutella, or as we call it "chocolate toast". He started eating 2 slices of chocolate toast 3 times a day, with a few other things, such as soup or a hot dog in between. Then about after a week, he switched from chocolate toast to Cheerios. Now he is eating 2 bowls of Cheerios, 3 times a day.

Liam may have even gained a few pounds to 35 lbs, go figure. We just keep trying to get him to try new foods, and hope someday soon it will improve. He just won't try anything new. We tricked Liam and got some ice cream on his tongue, he acted like we gave him the worst thing in the world. He rubbed his tongue, spit and was VERY mad. If we can't even get him to eat ice cream... sigh.

Thursday, July 11, 2013

Quick MRI and Follow Up With Neurosurgeon

Liam had his "quick head MRI" this morning to check the hydrocephalus. The good news is that he won't get surgery for it now. Unfortunately, the lateral measurement was 5mm bigger again today. The small increases still indicate a small blockage, but because it isn't a huge change and Liam isn't presenting with any symptoms, they won't do a shunt or surgery yet.

Next routine MRI is the end of August, so they will measure the ventricles to monitor the hydrocephalus again then.

For those who really like the details, the aqueduct is larger now. In May, the doctor said the blockage looked to be there, but the MRI today does not look like it is there. Therefore Liam would be looking at a shunt instead of the scope to fix the hydrocephalus. But we can hope the increase just stops one of these times!

Here is a picture of Liam going into the MRI. He was awake, because the MRI only took a few minutes. (Is this kid a trooper or what for sitting so still!)

Wednesday, July 10, 2013

Happy Birthday to My Amazing Boy!

We may all be getting a little tired from celebrating Liam's birthday, but we keep celebrating! Such a wonderful birthday compared to last year when Liam was admitted to Unit 1 getting chemo.

I asked Liam what he wanted to do on his birthday, he wanted to go to Calaway Park. Grandma, the kids and I enjoyed the morning there.

Then we had pizza and DQ ice cream cake tonight. Neither of which Liam will eat, but the rest of us enjoyed it very much. For his birthday dinner, Liam had toast with Nutella followed by a chocolate cupcake from his birthday - minus the icing.

Tuesday, July 9, 2013

Yo Ho Ho Party Like a Pirate

Liam turns 5 on July 10! We had his pirate themed birthday party on the weekend, it was a fantastic day.

Lucky one of the few foods Liam will eat is "black cake", so he ate his birthday cupcakes this year!

I can't even say how happy the day was for me to see him having so much fun. It was a perfect day.

Thank you Tara for taking some great photos of the day for us.

Wednesday, June 26, 2013

Cancer is Not a Cold

I had no idea about childhood cancer before I was thrown into this world, so I understand when other people also don't know. Many people are under the impression that once Liam's treatment is done that we can put it all behind us. I suppose people have heard the statistic about pediatric cancer having 80% 5 year survival rate, which does sound good. Cancer is not like a cold. You don't just get over it and it is over.

I've previously listed the long list of side effects, long term effects/late effects that Liam will face from surgery, chemo and radiation. Medical conditions for kids surviving cancer are certain and very real, we can only hope they are less. Liam has troubles with motor skills, he may never ride a bike due to balance issues, he may always be smaller in size (currently 3rd percentile), these are all minor. It's the heart, kidney, hearing, secondary cancers and other issues that are the most scary.

Unfortunately, Liam is already facing his first issue, hydrocephalus. Scar tissue is causing blockage of the normal CSF flow in Liam's brain, possibly from the surgeries. Do we intervene with surgery now, to prevent further hydrocephalus? Do we wait until Liam presents symptoms? Is the hydrocephalus causing Liam brain damage right now? Possibly, there is no way to know. Shortly after Liam's 5th birthday, he may have to go in for more surgery (brain surgery #3) to his brain to fix the hydrocephalus.

You might ask how long Liam's life will be compared to an average person. Consider this - there are no statistics because so few people with Medulloblastoma have lived into their 30s yet. Out of the children who were diagnosed with Medulloblastoma 30 years or more ago, many/most of them are no longer with us. Medulloblastoma is a very aggressive form of cancer, which they had troubles diagnosing early enough 30 years ago. Thankfully, MRIs can tell us much more about the disease now.

Chemotherapy and radiation have killed the cancer in Liam's body... but:
- One of Liam's chemotherapy drugs has a possible side effect of Leukemia.
- Radiation causes cancer and Liam had 30 days of radiation, not to mention I can't count how many CT scans and x-rays.

Any child (or any person for that matter) who is impacted by cancer is never "just over it" when the scans are clear. Every 3 months, when Liam gets his MRI and lumbar puncture, then there are 2 ways the results can lead, overjoy or devastation. 3 months is a short time to go through the emotions of waiting for the MRI and recovering from the stress of going through it. I am most thankful that Liam does not have the same stress about it as us. We don't know how much stress the anesthetic and tests cause him, but we can hope that we are carrying most of the stress.

The other factor that is always weighing on us, what are the chances of relapse? We don't know, perhaps 30% chance. The most relapses happen in the time frame of the next couple of MRIs. If we can make it 2 years out, we can breathe a little easier. With cancer in general, 5 years is much better. Unfortunately, Liam doesn't fall in the best case statistic of 80% survival, because he wasn't average risk. What happens if he relapses? Let's just say the doctors won't give us a survival rate on it, because it's not good.

I can't even say how grateful I am that Liam is doing so wonderful, despite what he's gone through. He has definitely beat a lot of odds already. I just find the more people I speak to, that many people don't understand the impact of cancer when treatment is over. I really appreciate when people ask questions, please don't hesitate to ask.

Tuesday, June 18, 2013


It felt like a big event... we returned the feeding pump! This is the backpack that held the feeding pump that we used with Liam's NG (nasogastric) tube - the tube that went into Liam's nose to his stomach. The pump is inside the backpack, the backpack allowed Liam to be mobile while being fed the formula. No one is sad to give this away, and none of us want to get another NG tube put in. Liam had not gained any weight yet, but his eating is slowly getting better.

Liam has had weekly OT to practice printing and scissor skills, his last weekly appointment is next week. He has come along so well, he cuts out shapes with ease now. What we've learned through these sessions is that Liam may need extra one on one help in Kindergarten with new tasks. But, Liam has shown us that he is very capable of learning and improving. Liam has worked with 2 OT students now, they've both been really great with Liam.

Liam did wonderful at speech and physio today. Physio/speech are now about every 6 weeks, it has been wonderful to see improvements with every appointment (i.e. walking stairs, jumping, balancing, overall coordination). He was very apprehensive, but he tried the climbing wall! I'm so proud of him!!

I am so very grateful for the group of therapists, they have been so great to us the last year and Liam absolutely loves them.

Wednesday, June 5, 2013

Eating, OT & Immunity

The good news is there is not much to update these days, everything is going well. Liam improves in so many ways almost weekly. I think that he is making up for the 6 months he was getting chemo it felt like he was stalled from growing and developing during chemo.

Recently, on a rainy day, we went to the mall and for the first time Liam walked through the mall instead of riding in the stroller! We always bring the single stroller to the mall, Liam rides and Madison walks. But of course, she's a BIG girl and big girls walk. Liam still gets tired really easy, so it was a big surprise to me when he was willing to walk.

Even with fatigue, Liam is having fun in U5 soccer. He has balance issues, but is doing so well running and kicking the ball. We just can't get him to try to get the ball away from other kids :-).

Eating is always a challenge, but he has set some records with recently. Liam ate 7 McDonald's chicken nuggets and a few fries at one meal, this was a huge meal for him. Although, he may not have eaten the rest of the day... baby steps. We try to remind ourselves that he vomited for almost a year, we can't expect him to love food yet. He hasn't gained weight yet, unfortunately now he's in the 3rd percentile.

The occupational therapist got another student, meaning extra OT sessions for Liam. Liam has weekly appointments for OT, and goes every 6 weeks for physio and speech therapy. It is interesting watching the OT sessions, where they are working on pencil and scissor skills. The area he struggles with is with getting his fingers/hands to do what he wants them to. It takes a lot of time for him, he requires a lot of repetition and practice. He is still unable to put the pencil correctly in his hand, but Liam has mastered the scissors and uses them like a pro. I can't believe how many creative ways OT has to get Liam to spell his name over and over!

To get Liam to practice, we made some name tags. Even though he struggles putting the marker in his hand, once I help him get into place, he is doing really well at printing his name.

I know I've mentioned several times, but it is hard to believe a year ago Liam had troubles standing without falling. He had ataxia, which caused his hands to randomly shake, this is gone now. I am so thankful Liam has come this far in a year and to be working on printing and scissor skills is pretty amazing.

It seems as though Liam's immunity is working well, he was last neutropenic end of October. We don't get Liam's blood counts done regularly anymore, so we don't know where his counts are exactly. Liam is getting the same colds as the rest of the family and fighting them away like the rest of. I still worry about Kindergarten and the number of illnesses that just normally go through the schools... but at least he's getting a chance to build up his immunity now.

Liam still wants to be a race car driver when he grows up and now he has the suit to practice!

Monday, June 3, 2013

Survivor Day

Thanks again to Kids Cancer Care for the fun day out at Camp Kindle. It was a rainy day, but no one there minded. They even made use of the dunk tank!

 Liam got his face painted to look like a pirate, he looked pretty awesome.

Liam loved playing with Roary the mascot for Children's Wish Foundation!  

Volunteers for summer camp were there as well, you could tell there was excitement in the air. I am amazed at how many kids I have met that attended camp for many years and now are volunteering there. It's wonderful to see the stories and meet so many wonderful people.

Sunday, June 2, 2013

National Cancer Survivors Day


We are attending a Survivor Day at Camp Kindle, held by Kids Cancer Care Foundation. Bouncy castles, face painting, a magician, sounds perfect!

Wednesday, May 15, 2013

Liam's "First" Hair Cut

First haircut before Liam's first birthday. He was not impressed with getting it cut!

He's had some crazy hair, this picture was taken April 2010.

Today was Liam's first hair cut after it grew back after treatment. It's really hard to believe he had no hair at Christmas. The stylist evened out the hair that had fallen out a second time from radiation at the lower back of his head, it is growing in nicely. He said he liked getting his haircut this time.

Follow Up with Neurosurgeon (3rd time)

We met with the neurosurgeon this morning. As usual, they are happy to see Liam and happy to see how well he's doing, considering how much he's gone through. Liam did all the neuro exercises really well. I can really see the changes in Liam's cooperation as he approaches 5 years old. A year ago doing the neuro exercises was hit and miss. We had a resident do Liam's examination, which was really interesting for us, because the neurosurgeon (Dr Hader) and the resident discussed some details we wouldn't otherwise hear.

The conclusion is we are not doing anything about the hydrocephalus right now. If Liam starts having any symptoms from the hydrocephalus, we will have to do something. Thankfully we don't have to wait for the next 3 month MRI to measure the level of fluid. Liam will go for a "quick" MRI in early July to see where it is at. This will be a less detailed than the MRI that is looking for disease, so it's very quick and won't require sedation.

There is a chance that the fluid could stabilize and not increase, which would be great and we wouldn't have to do anything. CSF is flowing through (or he'd have much bigger problems), but the buildup shows a partial blockage is causing CSF to not fully move from the fourth ventricle through the aqueduct. Since the amount has been increasing since January, it may keep increasing.

If Liam starts getting nausea/headaches/starts walking funny, or if the next scan shows an increase, they will do something to improve the CSF flow. There are 2 options. The first option is to use a scope and create a small hole in the ventricle to allow the CSF to flow (Endoscopic Third Ventriculostomy). The other is to put in a VP shunt, which is a tube that would go from Liam's brain and drain CSF into his stomach. He said Liam is a good candidate for the Endoscopic Third Ventriculostomy. This procedure takes about 20 minutes, and is a 1-2 night hospital stay.

Both options are considered low risk, but poking holes or putting tubes into his brain are still harsh for us to hear and of course both do have risks involved. How much would we love to be worrying about summer plans and not any of this!!

Tuesday, May 14, 2013

The Truth 365

Have you watched it yet? If not, you need to watch this video about childhood cancer. It's not easy to view, but it's the horrible truth about kids getting cancer:



Misconception #1: Childhood cancer is rare - it doesn't feel rare to me when there is a whole wing of the Alberta Children's Hospital full of kids getting treated.
Misconception #2: Children's cancer is like cancer in a small adult - not true, the cancers are different. Liam's brain tumor is rare in adults.
Misconception #3: Over the past 40 years, there have been dramatic improvements in childhood cancer. Is a 5 year survival rate something to celebrate for a 3 year old? Is cutting, poisoning and burning kids an improvement? Living a life of medical problems from the treatment? Many of the chemotherapy drugs are 40 years old.

Have I mentioned one of Liam's chemo drugs can cause Leukemia?
Radiation is the "gift that keeps on giving". Liam brain will continue to be damaged for many years.

I had NO idea of any of these things before I was thrown into this world of kids cancer.

Monday, May 13, 2013


As I mentioned before, Liam has hydrocephalus (a disruption in the balance between the flow or absorption of cerebrospinal fluid (CSF) in the brain). Specifically to Liam, the amount of fluid in the fourth ventricle of his brain keeps increasing. The amount of fluid should be moving and the ventricle should maintain the same level of fluid. Because the fluid is not moving like it should, the fourth ventricle is increasing.

So far, we don't think the hydrocephalus is significantly impacting Liam. Unfortunately, the enlarged ventricle can start causing pressure, and then cause damage to his brain.

I don't know if the neurosurgeon will suggest it is time to intervene. I don't know what options they would use to treat Liam yet. Off to the neurosurgeon we go again, our appointment is on Wednesday. We'll find out if they'll do something to fix the hydrocephalus now, or continue to monitor.

Thursday, May 9, 2013

MRI Results - Good News Again

I just received a call from Liam's oncologist, there is no sign of any new cancer growth in Liam's head or spine! (no lumbar puncture this time, another one in 3 months) Liam's oncologist, Dr Lucie did an initial review of the MRI with the radiologist. She did emphasize this is not the final report, but this puts our minds much more at ease.

The small unknown area that lit up the MRI back in July is even smaller again. It would be nice for this to completely go away so we don't have to keep watching it, but it's now so small it's hard to find in the image. This is good.

The only concern is the hydrocephalus in his left ventricle. In the last 2 scans, it has increased and the amount of fluid increased again with this MRI. We've been to the neurosurgeon after the last 2 scans to review with him, and both times he has said that we'll keep an eye on it. I don't know at what point they'll intervene. Dr Lucie sent the MRI to him to review again, so I'm sure I'll hear from him soon. The last couple times we've gone to see the neurosurgeon, the team (neurosurgeon, fellow, resident & nurse) pretty much smile at Liam jumping around and playing and say "he looks great to us". They keep a close eye on Liam's motor skills, whether he is getting headaches, and his eyes, these are the things that could be affected by the hydrocephalus. I don't see any of these things being affected. These are also the symptoms of Liam's tumor in the first place, so I am super sensitive to watching all of these things. If Liam would cooperate, I would do the neuro exam exercises every day!

We have an appointment for a physical exam with Liam's oncologist Monday and hopefully they'll have the final results to review.

This is the best Mother's Day present I could ask for.

MRI Done

Liam's MRI was moved to an earlier time at 9:00am, so that was nice. Liam didn't notice leaving the house without breakfast or milk, since we had to be there at 8:00am.

This was the first MRI with sedation since Liam's central line was taken out. The central line meant Liam didn't have to get a poke for anesthetic, they used the central line. This morning they gave Liam a bit if gas first, then put in the IV in his hand to use for the anesthetic. They also use the IV to inject contrast to get better images with the MRI.

The "before" picture is Liam and Madison in the room before the MRI. In the "after" picture, Liam is putting the mask on teddy to put teddy to sleep. The anesthesiologist was so good, she did the same for both Liam and teddy. Liam wasn't concerned at all going into the MRI, he did really well. Today he even said the "sleepy medicine" was ok. This is good since he's been talking a lot about how he doesn't like the "sleepy medicine".

The oncologist might not get back to us with the results until the end of day tomorrow. We realize (and are grateful) that we are not the highest priority of urgency now. We will have some patience and try to sleep tonight!

Monday, May 6, 2013

Scan time again already

Just when things almost feel "normal", it's scan time again. Liam's next MRI is this Thursday. Liam is happy and very much enjoying the warm weather. He just plays like everything is normal, unaware that he'll be getting anesthetic again this week. Unfortunately, he is starting to really hate the "sleepy medicine". We might be in for a bit of a bad day, as his MRI isn't until 1:00pm. Because of the anesthetic, he can't have any food or water that morning. Even though Liam doesn't want to eat, he loves his milk. When he can't have his milk, we will have one grumpy bear on our hands!

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!


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!


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!


 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.


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


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

IMG_4903.JPG by Troy and Karla Gould

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.

IMG_4934.JPG by Troy and Karla Gould

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

46034250050.jpg by Troy and Karla Gould 

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.

DSCN0169.JPG by Troy and Karla Gould