Thursday, December 27, 2012


Liam is done 8 of 13 days of radiation treatments of phase 1, all without anesthetic. We still are not exactly sure how many more treatments are after that, but it probably is 15 or so more days of treatments for phase 2. We haven't gotten the final details on it yet, it's hard to get in touch with the right people over Christmas, unfortunately, they are very busy.

The iPad is right above Liam's face, Felix the frog is at Liam's feet, Liam is holding teddy and Felix Junior. Before treatment starts, all the stuffies give each other high fives, Liam runs around a bit, then gets up onto the bed. Liam uses the remote to move himself up, then he lays down and they secure the mask over his face and quickly get a show going on the iPad.

In this picture, you can see the laser lights lining Liam up to the dot on the mask. Liam loves the lasers!

Everybody is still so thrilled that Liam is doing the treatments without anesthetic, when we walk down the hall, people I've never met give Liam high fives and tell them he is a star. We are just so happy that they helped us do so! Last week, something was wrong with the imaging so the treatment took extra long, Liam was in the mask for 2 episodes of Curious George (25 mins each). The time varies, but it isn't generally be more than 10 minutes. Having Liam there for that long was definitely a test, and he sat perfectly still the whole time.

Unfortunately, there is a smell of ozone during the treatment and Liam has started saying that it is the "stinky machine", I hope it doesn't both him too much. They suggested the radiation could also give Liam a heightened sense of smell.

Liam had Christmas Day and Boxing day "off" of treatment, but otherwise we are there every weekday at 8:30.

Thursday, December 20, 2012

Pediatric Cancer in the Media

You know how once something affects your life, you seem to see more about it around. That is me with pediatric cancer. Not sure how many people would have caught the Dr Oz show today, they had Marlo Thomas on to discuss St Jude's research hospital, one if the largest pediatric cancer hospitals.

Dr Oz also interviewed a Mom and son, the son had a brain tumour when he was less than 3 years old and he is now doing wonderful. A picture showed the same scar as Liam had, the telltale sign of Medulloblastoma. The mother talked about how St Jude's research gave them the ability to do treatment without doing radiation, due to the impact radiation has on young kids, something we have struggled with immensely. She mentioned the testing that was done at St Jude's that other hospitals didn't do.

I am proud to say that our oncology team is very up to date with the latest research and did this testing as well, Liam had his disease tested for the subtype. Unfortunately for us, Liam's subtype was not the one that had a fairly high success rate with chemotherapy only. Which is why Liam is undergoing radiation therapy at the moment, to give him the best chance of survival.

The other story in the news is a woman in the UK, whose son has Medulloblatoma brain tumour. He had the tumour resected and then she took her son and went into hiding to avoid having to give him radiation. By waiting to treat him, this aggressive disease has already recurred, so he needs another surgery. This has actually now gone to courts and the court has ordered that he gets the surgery. The decisions we have to go through for treatment are horrible for a parent to have to make.

Monday, December 17, 2012

Second Treatment Done

Liam did his radiation without anesthetic again! Today was thanks to "Curious George".

This week we go for treatments every morning, it will be the only week that we go every day because of Christmas and New Years falling on weekdays. Troy is at home, so we will take turns taking Liam in. We don't have to wake Liam up to make the 8:30 appointment, since he already gets up around 6:30 or so, but his sister sleeps longer, so it is much easier not to bring her along too. Although Liam really wants to show his sister the laser lights in the radiation room, he asks all the time if she can go too.

Saturday, December 15, 2012

Friday, December 14, 2012

First Day of Radiation Done

Troy took Liam to the Tom Baker Cancer Centre for the 9:00am appointment, and I dropped off Madison at a friend's so we could both be there. Liam got going so quickly that I arrived when they were finishing! It's great to get going quickly, and there was nothing I can do during the appointment, so I didn't miss anything.

I was a little nervous because Liam had to have no foods or liquid just in case he required anesthesia, and he really wanted a banana before he left home. I wasn't sure if this would be the factor that would determine how the appointment went, but he forgot about the banana, and it didn't turn out to be a problem. I'm not sure why, but Liam always runs a few laps around the room where he gets the treatments, I suppose it's good to get some "energy out". Liam got going with no problem, he watched "Max & Ruby" on the iPad while he was on the table, with the mask on.

To find out if Liam moved at all, they took a scan before and after the treatment and Liam was in the exact same position, thank you "Max & Ruby". The therapist went into the room and tried to distract Liam, but he didn't even flinch when she waved at him, he is taking his job seriously.

After he was done, Liam got to put the first sticker on his progress chart that they made him (Cars themed). The radiation team was so thrilled that Liam did it without anesthetic, we were talking about it after, and Liam just sat eating his banana, unfazed by it all.

We haven't spoken to the doctor this week, but the plan is for 13 treatments instead of 30, so this is also good news, as this would mean we finish on January 4. (We knew 30 didn't make sense... but they didn't want to confirm the number until the plan was completed) Still not exactly what we wanted to do during the Christmas holidays, but if Liam can do it without anesthetic, we can still plan on doing fun things.

If Liam does decide part way through that he won't sit still, there will be an anesthesiologist at Tom Baker every day, because there is another wonderful little boy we know, too young to go without anesthetic, getting radiation just before Liam. Liam still has his broviac line, so it makes anesthetic quick and easy, if it is necessary.

The biggest challenge of radiation is going to be putting lotion on Liam's head. We need to put lotion on the back of his head several times a day to prevent soreness, which will occur over time. (Some people get to be like they're sunburned). Liam freaks out when we even mention putting lotion on him, not meaning on anything that is sore, he freaks out when we try to put lotion anywhere. And not medicated lotion, just regular lotion, on any part of Liam's body, he freaks out and frantically tries to rub it off with a towel. When Liam was in recovery after a previous anesthetic, Troy put lotion on Liam (because it's a dry time of year in Calgary) and Liam's heart rate went up! All Liam has gone through, and he believes lotion and baths are the worst things, hmm, two my favourite things!

Wednesday, December 12, 2012

Radiation Starts Friday

It might sound crazy how often they've changed our dates... unfortunately, the doctor is just very busy. Making the radiation plan is very important, so we don't want him to rush Liam's plan.

He worked hard to get the plan done, so we'll be starting Friday morning.

Be Child Cancer Aware

From today's Be Child Cancer Aware Facebook Post, a UK organization working on raising awareness of childhood cancers.


Brain tumours are the most common solid tumours that occur in children. Children of any age may be affected. About 450 children in the UK develop brain tumours each year. Boys are affected slightly more often than girls.

Brain Tumours are now sadly the leading cause of death in childhood cancer.

The two main types of brain tumours that affect children are gliomas and medulloblasto

Gliomas develop from the supporting cells of the brain (which hold the nerve cells in place). They can be subdivided into two main types in children: astrocytomas and ependymomas.
Medulloblastomas usually develop in the cerebellum. They may spread to other parts of the brain or into the spinal cord.
Symptoms of a brain tumor might include

* Headache
* Vomiting and nausea
* Personality changes
* Depression
* Trouble controlling muscles
* Seizures
* Vision or speech problems
* Drowsiness or moments of unconsciousness

If hydrocephalus occurs in a young baby, the soft spot on the top of their head may bulge and their head may increase in size.

Treatment for children is sometimes different than for an adult. Long-term side effects are an important issue. The options also depend on the type of tumor and where it is. Removal of the tumor is often possible. If not, radiation, chemotherapy or both may be used.

Be Child Cancer Aware

Tuesday, December 11, 2012

More Practice for Radiation

Our day started out with Liam having non stop temper tantrums and crying at a drop of a dime. It was a tough morning to say the least, it must be so tiring for Liam having the tantrums. I figured he would be exhausted for the afternoon, we had arrangements to go for another "radiation practice". I didn't think it would go well, but Liam came through and did a great job.

Liam got another chance to play with the bed and machine controls. Then Liam put Felix the frog on for a trial run, you can see where the mask gets fastened to the table.

Then it was Liam's turn to get up on the bed and put the mask on.

This time the therapist fastened the mask to the bed and I left the room (she didn't actually fasten it last time). I watched from the control room where they have monitors, she moved the bed and machine around to see if Liam would be okay. Then the therapist left the room while he was fasted to see how he would react. (No one can be in the room with Liam during radiation) Liam just watched Cars on the iPad without moving. The white spots on the mask where Liam's eyes are will get cut out, but initially they need the full mask, Liam was okay with watching the movie through the mesh.

Liam sat with the mask clamped on longer than an actual treatment today. There is setup, etc, but the time of treatment with the mask on will be around 10 minutes.

Things are looking positive to do the radiation without anesthetic, so we will give it a try.

The start of radiation has been delayed again (the doctor is very busy), it looks like we should start Monday. It's hard to be disappointed, but also frustrating because we just want to get it over with. Radiation is key in preventing recurrence of this evil disease, so that's always going to be at the back of our minds.

Monday, December 10, 2012

Liam Update

Things almost feel "normal" for now, while we are waiting to start radiation. As normal as possible anyway. Liam has great amount of energy, he plays all day long. He has some tired days, but he rarely naps, and hardly falls asleep in the car on the way home from preschool now. We've still been to the hospital a couple of times a week, but also making it to preschool twice a week.

Eating is still a challenge. Liam has tried some new foods, he now loves fries and McDonald's chicken nuggets, which he never ate before. He eats gingerbread cookies and girl guide cookies every day, drinks milk, and the odd banana. Because Liam is eating some, we aren't giving him full NG feeds, but we're still doing about 3 feeds a day to make sure he gets enough calories. Not to mention cookies and fries aren't exactly a full range of nutrition. The main thing we are focusing on is just keeping him eating some food, no matter what it is, just to keep everything working. Chemo just is plain cruel to the taste buds, not to mention that Liam has vomited so much, he has an association with eating and vomiting. We won't be aggressive with taking the NG tube away until Liam is done with radiation, we hope radiation won't cause him nausea, but there is a chance. As soon as Liam is nauseous, he won't eat.

Liam has beautiful eyelashes coming in! They are only a few millimeters long, but they are thick and coming in fast. Liam has some fuzzy short hair all over his head as well, but it doesn't look to come in as fast as his eyelashes. It's still hard to tell what colour his hair will be (sometimes it comes in different than before), it looks like it is light, it's hard to see it.

I've been trying to get a Christmas card together, so I've been going over the pictures of the last 225 days since Liam's diagnosis on April 30, it is almost too hard for me to go through them and be reminded of all Liam has gone through.

In the picture, Liam has his stethoscope around his neck, Liam does a perfect physical exam like the oncology doctors do. He will do physical exams on us and Madison and even tell us in a soothing voice that we are doing a good job. When the exam is done, he puts the stethoscope around his neck, just like the doctors do, it's very cute.


I've posted before about Liam working on his beaded journey.  Liam's Beads

Liam loves working on his bead rope, and it is great work for his fine motor skills as well. Some people asked if they could get something for Liam for Christmas... if you would like to send Liam some beads for his rope, that would be something special for him.
I got this idea from 2 sweet boys who gave Liam some beads after they saw the blog posting about Liam's beaded journey, very thoughtful.

I don't want to post our address here, but if you send me an email or Facebook message, I will send you our mailing address. 

Thursday, December 6, 2012


Liam had the radiation simulation done on Monday, and the face mask made. I mentioned before that kids Liam's age generally get anesthetic every day for their radiation. But, Liam has done a couple of MRIs and CT scans without anesthetic, so the radiation team is willing to help us try to do radiation without the anesthetic. It's not like we are committing to no anesthetic, if he starts getting upset or anything, we just arrange for the anesthesiologist for the next day and forward.

The radiation team suggested that we get Liam used to the room with the machine (we have a wonderful radiation therapist). Troy took Liam to the Tom Baker, and Liam got the opportunity to play around in the room with the machine. Liam played with the bed controls (moved it up and down, etc). Liam even laid down on the bed and put the mask on! There is an iPad mounted on the machine, which Liam can see through his mask, so he sat and watched Cars.

I don't know how well I would handle laying there with a mask holding my head to the bed! But, I try my hardest not to show my feelings and we are trying to make it all seem fun. They even have a giant frog Felix that they use to demo putting the mask on, and they gave Liam a small frog to match him.

If Liam can do it, it would be great not to have anesthetic. The actual radiation only takes 15 minutes. If Liam gets anesthetic plus radiation it would take around 1 1/2 hour. On Monday, when he had anesthetic, he was still unable to walk without falling until about noon, so that would be tough every day.

We have no expectations, he is 4 years old and this is a lot. But, it is worth a try. It is looking like radiation will start on Wednesday, daily for about 6 weeks.

A team at Tom Baker got the iPads working just this summer! iPad for Kids

 Felix is up on the bed of the machine and Liam is moving the bed around.
Liam was quite impressed with all the lasers.

 Felix watching Cars.

Look at this kid giving Dad a thumbs up!

A volunteer paints the masks for the kids, it's the little things that help.