Sunday, November 16, 2014

Good Weekend

We had a quiet weekend at home, trying to keep Liam to quiet activity. He stopped taking Tylenol... he is SO stubborn! He says the incision site hurts sometimes, but only if we ask. 

Liam was back to himself all weekend. It seems crazy that he could feel so good right after surgery. It makes me wonder about how much of his life (before diagnosis, during chemo & radiation) he has spent with pain, to take pain with such stride like he does.

We weren't sure, but Liam wants to go to school tomorrow. Liam really misses his friends, he's excited to see them and his teachers.

We had to wait to wash Liam's hair to give the stitches time to heal. We were able to tonight. After washing, Liam asked to comb his hair to cover his stitches. He is self conscious of his scars, he already wants to keep his hair longer. In Kindergarten, a classmate saw his scar and told him to go to the hospital to get it fixed. Liam takes the little things to heart.

Liam has dissolvable stitches, so he doesn't have to go see the doctor right away. We follow up with the surgeon in a month.

Thursday, November 13, 2014


Liam was discharged and we are home!

Liam's MRI was very quick. Everything looked good. They can see the hole that they "poked" in the ventricle wall, as expected. Hopefully with the next MRIs they see the third ventricle wall with less pressure on it, and that will mean it is working.

Liam is feeling very good. Around noon, he said he had a bit of a headache and he had a nap. Now that we are home, we have to try to keep him to "quiet activity". He just keeps happily playing non stop! Besides the surgery site, you would never know he had surgery.

Liam is doing well

Yesterday was indeed a long day. Liam handled the fasting up to the surgery pretty well. He was quite emotional, but he was pretty nervous too.

Surgery started around 12:30. We got paged at 2:30ish. Liam woke up grumpy and irritated with the IV in his hand. The wonderful nurse found him a DVD player and Star Wars III, which he wasn't supposed to watch until he was older. Troy tried to distract Liam from the movie during the scary parts. Liam was very happy about the movie.

Liam had no pain or discomfort. He had no pain medications, just tylenol. Liam was a bit wobbly walking to the bathroom, but nothing abnormal.

Unfortunately, the hospital was jam packed and we had to wait in day surgery recovery for a looong time. It is not a comfortable place to hang out when Liam is feeling fine. They got Liam moved to a bed in unit 3 at 5:30.

Liam had an uneventful night and is feeling good this morning.

They will do a "quick head MRI" today to make sure everything looks good. (no anesthetic required) I'm not sure if they'll know if the surgery actually worked yet, it might be a long term monitoring thing to know if the csf is flowing better and the pressure on the 3rd ventricle is relieved. (there was 2 years of scans leading up to this surgery) I'll find out more from our wonderful team, Dr Hader and Kelly today.

Wednesday, November 12, 2014

Out of surgery

Surgery went well. Liam is watching Star Wars and a bit grumpy, but otherwise doing great.

Tuesday, November 11, 2014


Liam had bloodwork done Monday in preparation for surgery. He gets a band on his wrist that he can't take off until after surgery. (What he is showing in the picture) This is for the identification, if he needs a blood transfusion. There should be no need for a transfusion, but they are prepared.

Liam has been packing a suitcase to prepare to go to the hospital, he said he was ready to go yesterday! Liam will still kick and scream when it is really time to go though, we know that. Who can blame him, he's already been through so much, and he's had a good break since treatment! Plus, he isn't allowed breakfast the morning of surgery, because of the anesthetic. That can make for a grumpy boy. We have to be at the hospital at 10:30 in the morning.

Liam has had a runny nose on and off since school started. It is up to the anesthesiologist to decide if Liam is fit for anesthetic. There is the chance the runny nose could delay surgery to another day, depending on how Liam is doing tomorrow.

It is weird, I am struggling to post to the blog again. I suppose because i associate it with Liam going through treatment, not exactly great memories. It is oddly hard for me to just write this post.

Having said that, I will try to update everyone as soon as I can when surgery is done.


Surgery for Liam's hydrocephalus is booked for Wednesday, Nov 12. The MRI did not show improvement in the increasing ventricle size caused by the blockage. It really sucks to have to choose between the risk of brain surgery or delay the surgery and potentially cause Liam brain damage from the long term pressure in his brain. The surgery is called laproscopic 3rd ventriculostomy. They poke a hole in the third ventricle to allow the csf to flow properly to relieve the pressure. This surgery is minor compared to the other surgeries Liam had. He should only be admitted for 1 or 2 nights. Being 6 yo now, Liam is much more aware (compared to the 5 surgeries he had at age 3 & 4), and he is pretty angry about it. F u cancer.

Tuesday, September 30, 2014

Our Story

Troy did a summary of our story for kidscancerawareness on Facebook. I wanted to share it here as well:

Liam's journey started in March 2012 at the age of three when Liam started vomiting randomly. Nothing abnormal was discovered, and we were getting very frustrated. Different tests were run for stomach ulcers, celiac disease, acid reflux, but nothing explained what was going on with Liam.  The vomiting became more frequent, sometimes twice in a day.

After a sleepless night of Liam vomiting throughout the night, we decided to take Liam to the emergency room at the Alberta Children's Hospital. The triage nurse quickly noticed Liam’s head tilt and rushed Liam through for a CT scan. At about noon, the ER doctor came by and gave us the news that they saw a "lesion" in the cerebellum of Liam's brain. Liam was admitted immediately, and prepped for surgery the next day. May 1 2012, Liam underwent a seven hour surgery where the nuerosurgeons were able to do a full resection of the tumor.

We had no idea what the future would hold for Liam. The next time we saw him in the ICU, he had a tube down his throat. His hair was shaved in patches. There were lines coming out of both hands and feet. Liam had tubes coming out of his skull to drain fluid from his brain. He had staples all around his head, and 30+ stitches down the back of his skull and neck. As parents we were helpless, and Liam`s future was in the hands of the doctors and nurses. He wasn`t able to speak for days, and couldn`t walk for weeks. To this day, he still has problems swallowing which was caused by damage to nerves around the tumor.

After a week of waiting for the pathology, we found out it was a malignant (yes, cancerous) tumor - medulloblastoma. The original classification was standard-risk medulloblastoma. However, a few weeks after the surgery a lumbar puncture was done to test Liam's spinal fluid. Unfortunately, abnormal cells were found which changed him from standard-risk to high risk. Wanting to start treatment as soon as possible, Liam had a second surgery to have a central line inserted, and went through apheresis to harvest and freeze his own stem-cells for bone marrow transplants later on.

Liam went through three rounds of induction chemotherapy which also included a lumbar puncture each time to inject chemo into his spine. After his third round of chemo, an MRI showed flair in the same place as the original tumor. That meant a second brain surgery to check for recurrence. The first time Liam had surgery, we really didn`t know what was going on. We were so overwhelmed that we didn`t have time to think. The second time came with much more emotion, anxiety and fear for what could be recurrence. We were now well educated, and knew recurrence was the worst case scenario. The doctors were never able to confirm recurrence, and the only explanation was that it was scar tissue or dried blood from the original surgery. As something that we never had a definitive answer on, it`s always worried us.

Liam quickly recovered from the second surgery, and started three rounds of high-dose chemo which included stem-cell transplants of his own cells. Each round, Liam ended up back in the hospital with fevers. We spent most of the next two months living in the hospital. After 86 nights in the hospital, we spent our last night on Halloween 2012. Liam was able to go out trick-or-treating that night. He was low on energy, and so happy to be home that he didn`t last outside very long.

November was spent planning for the next part of Liam`s treatment – radiation. The most difficult part was deciding how radiation to give Liam. Too little, and maybe the tumor comes back. Too much, and the radiation would cause serious long-term damage to Liam`s four year old body and brain. The holiday season was spent taking Liam to the hospital every morning for 30 rounds of radiation to the back of his head. Because they had to put his head into a fitted mask that is locked down to a table they prepared to have anesthetic each morning. Liam hated “sleepy medicine”, and was able to do all his radiation treatments without anesthetic.

Liam’s treatment finished January 29, 2013. He continues to endure regular MRIs. At first, every three months. Now every four months. However, the scar on the back of his head and neck is always a visible reminder of the anxiety of the next MRI.

Friday, September 26, 2014

September is Childhood Cancer Awareness Month

We have been sporting our gold shoelaces and gold heart necklaces all month for Childhood Cancer Awareness month. No family should ever have to hear the words "your child has cancer".

Wednesday, July 23, 2014

MRI Clear

What a relief. Another clear MRI, no sign of disease!

For the first time Liam did the MRI without anesthetic! It was just a head MRI, so it takes half the time of head and spine. Plus, no lumbar puncture (maybe no more ever!). Liam was able to listen to music, so Troy quickly downloaded The Lego Movie soundtrack. Part way through the MRI, they put the IV in Liam's arm, but it was a non issue because if the magical numbing cream. (Although Liam ran around screaming because he didn't want the cream) They still need the IV for the contrast to get better detail on the MRI.

Unfortunately, the hydrocephalus increased again. It hadn't increased since a year ago, so we thought it had resolved. We will have to go visit the neurosurgeon, but it isn't urgent. Sounds like we'll go late August.

Date wise, we are off schedule, but on the roadmap, this is the 1.5 year checkup.

And today was only $6 for parking! Record time in oncology. The nurse found Liam a Han Solo Lego figurine, Liam was very excited.

Dairy Queen for celebration!

Tuesday, July 8, 2014

10 Days Until Tour For Kids

A little bit of panic, and a lot of excitement about the upcoming Tour for Kids!

We received the official route, day 1-105 kms; day 2-103 kms; day 3-59 kms. The event takes place July 18, 19 & 20.

That means only 10 days left to donate to my ride! I am selling these beautiful necklaces donated by my talented Mom.

She made them gold, as gold is the color that represents childhood cancers.

Please send me the address to ship to:  karlablackwell @ gmail . com
Donate here:

100% of your donations goes to Kids Cancer Care and Camp Kindle, a very wonderful organization. Thank you everyone for your donations!

Sunday, June 1, 2014

Survivor Day

Today is Cancer Survivor Day. Liam doesn't care what day it is, he just wants to jump in bouncy castles.

Thanks Kids Cancer Care for the celebration.

Thursday, May 22, 2014

Kids Cancer Care Video

Kids Cancer Care produced a beautiful video with local families showing some of the services they provide. They have become a big part of our lives, providing support to Liam and our family.

Kids Cancer Care Video

THANK YOU for all the very generous people who have already donated to my ride with the Tour for Kids! You are amazing. 100% of your donations to the Tour for Kids goes straight to Kids Cancer Care.

8 more weeks until the big ride!

Sunday, April 20, 2014

Approaching 2 Years Since Diagnosis

So many small reminders. Easter traditions. The crazy weather as we wait for spring to come to Calgary. So many little things that bring back painful memories. I'm not sure how many years have to pass before we stop getting the painful reminders of this time of year. Obviously the day of diagnosis is a painful day, April 30, 2012. But we also are reminded of the stressful months before Liam's diagnosis. Why is Liam vomiting? So many tests, but why can no one tell us what is wrong with our little boy? Spring is a time of hope... but it brings painful memories too.

The good news is that Liam is doing wonderful. We are so grateful that Liam gets to just be a normal 5 year old boy now.

Wishing everyone a Happy Easter.

Thursday, April 10, 2014

Tour for Kids for Kids Cancer Care

I have decided to take on a huge personal challenge. It has been a long time since I've been on a bike, but I've decided to take on the Tour for Kids Alberta ride. The ride is 3 days through the beautiful Rocky Mountains. The ride is 100 km (or more) per day July 18-20. 100% of the money donated to the ride goes directly to Kids Cancer Care.

Here is the website with all the details of the ride: Tour for Kids Alberta

Why am I riding? For Liam and all the other kids and families who have had to face a cancer diagnosis. Kids Cancer Care has been there for Liam and our family since Liam's diagnosis with brain cancer. They are such a blessing in our lives. Liam gets rehabilitation through his PEER exercise class through KCC. Our family has attended many fun events for Halloween, a family ski day and many others. Last year Liam attended 1 week at Camp Sunrise, this year Madison will get to go to camp as well. 

Please consider sponsoring my ride and donating to this wonderful organization.

Link to donate to my ride:

A few pictures of Liam last year when we picked him up from camp. He absolutely loved it! Camp Kindle is a truly wonderful place.

Just a sample of what Liam went through from diagnosis until a year later... KCC Camps are really a wonderful opportunity for these kids to meet others who have been through similar experiences. 

Monday, March 17, 2014

$10 Clinic Day

I have no idea how many days we've visited the Alberta Children's Hospital for out patient chemo, MRIs or clinic. Often a sign that it was a good day is when we visit oncology and we don't reach the maximum parking charge of $13. Today was a good day - a $10 day. We were in and out in just over 2 hours. Unfortunately, oncology is a chaotic place, doctors are often called away or delayed, resulting in delayed appointments, etc. We can never know how long we will be there. Thankfully now we don't wait on blood test results, chemo, transfusions or pharmacy refills.

The kids are always so happy to visit the oncology clinic, go figure. As time goes on, we dread going there even more. It's so hard being reminded of the days going through Liam's treatment. The clinic rooms are the same rooms that Liam got his weekly doses of chemo. Not to mention the place we spent hours discussing the awful details of Liam's treatment.

Today was Liam's 3 month clinic visit. It is his 1 year post treatment checkup, although timing wise Jan 31 was 1 year. At his 3 month clinic, Liam gets weighed and measured. Then the doctor does a physical exam and a neurological exam. We discuss Liam's eating, fatigue and how he is doing socially and in school. As well, Dr Lucie gets Liam to do things like walk on his tip toes, walk on his heals, walk on a line. Liam still has slight dysmetria "improper measuring of distance in muscular acts". This is one of the of the side effects caused by the impact of the tumor and surgery in the cerebellum. His balance is the other area that is still improving, he can't stand on one foot for more than a couple seconds.

Dr Lucie had no more to add to the information about the MRI, it's the news we want to hear. The wording in the MRI report is something like "no new sign of residual or recurrent disease" and "stable hydrocephalus". It sounds so much better to say "ALL CLEAR"!

Liam will continue with MRIs every 3 months for another year. The MRIs are every 3 months for 2 years, because the first 2 years has the highest recurrance rate. Once 2 years is passed, we can finally breathe a little easier.

The picture is of Liam and his sister eating lunch in the exam room. The kids were too busy playing with the toys in the waiting room at the clinic to eat their lunch, so they ate while waiting for the doctor to come in.

Friday, March 14, 2014

Good News on MRI

A quick chat with the nurse, the brain and spine MRI shows everything is stable. That's the news we want to hear, all good!

No results from LP yet. Our clinic appointment is on Monday where we will discuss everything in more detail.

Thursday, March 13, 2014

MRI Today

3 month MRI, lumbar puncture and bloodwork today.

Monday, March 10, 2014

Parents' Quest for the Cure a Huge Success!

What an event! I was on the silent auction committee and am proud to say we exceeded our goal and raised $49,500 for the silent auction alone! The whole event raised $225,000, which goes towards pediatric cancer research. This is an event started by some Moms on a mission to do something about childhood cancer. What amazing work they are doing!

Troy and I were also lucky to get offered tickets to sit at a table of Kids Cancer Care parents thanks to a sponsor. It was an amazing and emotional night. A brave girl told her story about surviving childhood cancer when she was 4, it was so touching to hear it from her perspective. Here is a link to a Kids Cancer Care video they played at the event. These are all stories about Calgary and southern Alberta families. I don't know about the rest of the room, but there wasn't a dry eye at our table!

I wanted to send a thanks to my friends who helped me out with the items for the silent auction. Janalee at Fair Planet, Tara and Brant Leatherdale, Kath & Bruce Larsson and Sportique Apparel.

Pictures from the event will be posted on their Facebook page KCC Facebook.

Tuesday, February 4, 2014

World Cancer Day

I was talking to someone about Liam's beads and realized I haven't taken a picture of him with his beads from his beaded journey since we finished it. I thought it would be something to do today for World Cancer Day today.

We decided to spell Liam with his beads. The beginning (diagnosis) is at the "L", and the "M" are the beads we got on Liam's wish trip, and the last one for Camp Sunrise, which he attended in July. I haven't added any beads for MRIs or any appointments since then. I decided the wish trip beads were a good place to end.

Thank you Kids Cancer Care for providing the journal and beads for the beaded journey.

Wednesday, January 29, 2014

1 Year Anniversary of Last Day of Treatment

It's hard to believe that today is 1 year since the last day of Liam's radiation treatments. How different life is a year later. This morning, we attended a performance that Liam was in at school with his Kindergarten class! Last year in January, we almost had no activities besides Liam's 15 minute daily radiation appointment and were very housebound. Now Liam is in Kindergarten, he has soccer, yoga (Kids Cancer Care) and PEER (Pediatric cancer survivors Engaging in Exercise for Recovery with Kids Cancer Care).

This is the video of Liam 1 year ago after his last treatment, when he rang the bell.

It speaks to how great the people at Tom Baker Cancer Centre were to us, Liam has no negative memories of radiation at all. Troy and I cringe when he gets ahold of his radiation mask and wants to play with it. How Liam got bolted to the table with that on his head every day for 6 weeks without anesthetic, without freaking out, I will never understand.

At school, in addition to help with printing and speech, Liam is also now getting physiotherapy. He's come SO far physically. Last weekend, both Liam and Madison climbed a climbing wall at the park for the first time. I suspect when Liam saw Madison do it, he had to as well. Madison pretty much did it the first time, it may have taken Liam 10 times to master it, but he did it.

Happy boy, 5 1/2 years old! I just realized that Liam is wearing the same shirt as in the video!

Sunday, January 5, 2014

Parents' Quest for the Cure

Something I've learned through Liam going through cancer diagnosis and treatment is that very little money goes to kids cancer research. Kids cancers are different than adult cancers. More research is needed for kids, to find better ways of treating them. More research is needed to help kids deal with the long term effects of treatment.

This has motivated me to volunteer with Kids Cancer Care's event "Parents' Quest for the Cure". A wonderful lavish gala, which the money goes towards kids cancer research. The gala also holds a silent auction to raise money for childhood cancer research.

I am looking for your help in finding auction items for the silent auction. If your company can donate any items for the auction, or purchase gift cards, wine baskets, tickets, etc. There are many ways to help! The donating company to have business cards at the gala, and have their company name on the signage.

Cash or credit card donations are also accepted, by contacting Leah at Kids Cancer Care at 403 984 1223.

Please contact myself or Leah if you or your company would like to donate items for the silent auction. This would be greatly appreciated! You can contact me at karlablackwell at (substitute the 'at' with '@') or phone/text at 403.681.5860.

Any tips as to where I can find auction items would be greatly appreciated! Thank you everyone for your help!

Information on the Gala:  Parents Quest for the Cure Gala

Happy New Year!

Happy New Year everyone! We had a great Christmas, the kids loved every minute of it! Decorating the tree, Elf on the Shelf, Santa, flying to the North Pole to find Santa, presents and more presents, Christmas morning with cousins and playing with friends.

It's hard to believe January 29 will be 1 year out of treatment. Liam continues to have MRIs and checkups with his oncologist every 3 months. These are so tough on us, we just get into the routine and almost feel "normal", then 3 months rolls around again. Then we get that dreaded little appointment card in the mail from oncology for the next round.

2013 was a great year. Both Liam and Madison attended Jamie's Preschool for immune compromised children from January to June. This was such a wonderful place for the kids, they loved it so much. We were so fortunate to have had a safe place for the kids to play and avoid the flu season. In March, Aunt Ami came for a visit from Florida! The kids had a wonderful time playing with their Auntie and doing Easter activities together.

Thanks to Children's Wish, April was Liam's wish trip to California. We went to Disneyland, Legoland, Sea World and San Diego zoo. It was just such an amazing trip for the kids and us. We can hope that Liam remembers more of this than he does of his time in treatment. Even though Madison was only 2, she loved it too. The biggest trouble was she got SO mad when she wasn't tall enough to go on some of the rides! Both kids loved seeing all the characters. Liam could have stayed in Radiator Springs the whole time, he loved every detail from the Cars movies.

Early July, we celebrated Liam's 5th birthday! How emotional for us all! We had a BBQ and party and had a wonderful time at our pirate party.

We had a great summer of sun and fun in the Okanagan. The kids loved hanging with Grandma and Alex in their motorhome and playing at the playground at Kin Beach. Liam had a bit of a tough time with the heat, so spent more time in shaded play areas than at the beach. (In August, the temperature is generally around 30C/85F) Liam loved riding with Grandma and Grandpa in their boat on Okanagan Lake. Picnic lunches on the boat are awesome! We're always on the lookout for the Ogopogo, but haven't seen him yet.

September was a big milestone when Liam started Kindergarten. Kindergarten is 9:00-11:45am daily, with quite a few Fridays off. Liam is doing great and loving Kindergarten. Liam is getting extra help from speech therapy, and from O/T with his pencil/fine motor skills. Liam requires some extra help in completing tasks, fortunately, the Kindergarten class has a wonderful assistant.

Liam plays soccer every week and loving that. It's great to see him running and getting stronger all the time. Liam also participates in PEER, a program by Kids Cancer Care. The focus is to help kids recovering from cancer treatment restore their strength, balance, etc, with a program designed by exercise physiologists.

Madison is in preschool in our community. She was a bit hesitant to go alone, but now she is loving it. She is going to start a dance class soon, we'll see how she likes that. She turns 3 this week, she's no longer a baby!

Troy continues to enjoy playing soccer. He plays outdoor soccer in the summer and indoor in the winter. This summer his team won provincials, very exciting!

Thank you to everyone who gave us support and good wishes through 2013. We wish everyone a wonderful 2014!