MRI, Camp & Tour for Kids

I must admit, I do not remember to post to the blog these days. I am happy to say that life is mostly "normal" and not blogworthy!

The best news of the summer is that Liam had another clear MRI. This time was another full head and spine MRI with contrast. The enhanced areas in the spine that they were watching did not appear in this MRI. We haven't actually had Liam's checkup with the oncologist yet. We went straight from Liam's MRI to vacation, then the oncologist was on vacation when we got back, so we don't see her until the end of this month. The neurosurgeon is/was also on vacation, so we haven't seen him either. Such is life in Calgary, summer is short. We still keep in touch with the neurosurgeon to review the hydrocephalus after the surgery in November. I don't know how long we stay on 6 month MRIs... I still just focus on getting through one MRI at a time.

We had another wonderful Tour for Kids Alberta ride in July! We had a very chilly, wet first day. Then Day 2 & 3 were sunny and beautiful. It is such an amazing group of riders and volunteers. The Tour for Kids is a challenging and emotional experience, I am so proud to be a small part of it. Thank you to everyone who supported to me! Thank you for putting a smile on a child's face and helping families who have endure this awful disease. I can tell you first hand that Kids Cancer Care and Camp Kindle have been such a support to us since Liam's was diagnosed with brain cancer in 2012.
 

Liam and Madison both attended Kids Cancer Care's Camp Sunrise again this year. They had a great time and loved it very much. They attended day camp in Calgary, and they stayed overnight at Camp Kindle Thursday night. They did great at overnight camp and loved it! They have some very special friends that have been at camp together a few years now.

When I think back to this time of year in 2012 when Liam was in the middle of treatment, it is hard to believe Liam is going to be starting grade 2 this year. Treatment has left Liam with challenges, but we continue to figure out how to adapt. We are very fortunate that the school has been helpful in working with us to support Liam. Grade 2, here he comes!

Tour For Kids July 2015

It’s that time again! I have been trying to squeeze in bike rides whenever I can, in between kids end of year activities. This will be my second year riding the Tour for Kids Alberta. It was an AMAZING experience last year.

Last year was quite the adventure for my first ride. It was a sad and scary sight to see forest fires burning. Days before the ride, trees and grass had burned right up to the highway we were on. We rode past a bear on the side of the road. David Thompson Resort is a great place to stay, the area is so beautiful. We also get to stay at Camp Kindle, it is a truly special place.

I was honored to spend three days riding with the most amazing people. It was amazing to know that I was taking on this challenge for not only Liam, but other kids and families who have been impacted by childhood cancer.

I am doing the ride for so many reasons. The main reason is because I want to do a small part for childhood cancer. 100% of your donations go to childhood cancer, including Kids Cancer Care and Camp Kindle. Kids Cancer Care and Camp Kindle have been there for us through Liam’s journey and since. Kids Cancer Care puts on events that allow our family to spend wonderful days together and meet other families going through treatment or have in the past. Liam has gone to camp the last two years, and Madison attended with him last year. It's a special camp for our kids to share with kids who have gone through the same experiences with cancer.

Liam has unique challenges that are a result of having a brain tumor, going through surgery, chemotherapy and radiation. It is a challenge for him to keep up with other kids. We are so fortunate that Kids Cancer Care provides him with the support he needs so that he can have fun with other kids.

The Tour for Kids was a physically and emotionally challenging experience for me. But the ride was nothing compared to what Liam endured through his treatment.

Please support me as I take on this crazy three day cycling adventure for the second year!

Thank you all!

Link to my donation page:   https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2701029&langPref=en-CA

Photos from 2014

  Map of the ride:

note: I will be riding the 100 KM routes! 

http://www.tourforkids.com/alberta/

3 Years Since Diagnosis

3 years ago today was the day Liam was diagnosed with a cancerous brain tumour. "Your son has a 4cm tumour in his brain", one of many statements from that day that still haunt me. Another year has gone by, but this time of year still brings back so many memories of the worst day of our lives.

Liam is now getting MRIs every 6 months. This is the first 6 month stretch without any big medical activities. 6 months is wonderful, and gives us all more time for "normal" life without hospital visits and stress. We can even see a change in Liam having more hospital free time. Every time he has an MRI or surgery, Liam gets set back emotionally.

Liam recovered well from the hydrocephalus surgery in November. The MRIs show there is less pressure on his brain, which is what we hoped for. It will be monitored in all his MRIs, in case the fluid could start building again.

In terms of recurrence, every day/month/year away from the date of diagnosis is better. 3 years post diagnosis has a drop of recurrence rates, but 5 years out is the timeline we look forward to crossing. Fear of recurrence will be at the back of our minds a long time. This disease is a cruel, unforgiving monster.

Liam is doing amazing and enjoying life. He loves his friends at school very much. He (mostly) enjoys going to school and loves to read. We are very scared and frustrated that the education budget cuts might  affect the support Liam currently gets in school. It is crazy that this should even be a concern, but the school can’t confirm Liam will get the support he needs (what he is getting now, in grade 1) next year in grade 2.

I think everyone knows by now that Liam's new favourite movie are the Star Wars movies. The days of the Cars movie characters and Backyardigans (the characters at the top of the blog) are over, it’s a little sad! He’s officially a “big boy”.

A friend shared this blog posting the other day with great points that are so true.

http://acancermomslife.com/2015/04/25/15-truths-of-having-your-child-diagnosed-with-cancer/

2 Year Post Treatment MRI

Today is 2 years since the last day of Liam's treatment. Jan 29, 2013 was his last day of radiation treatments.

Yesterday, Liam had the 2 year follow up head and spine MRI and bloodwork. The MRI was clear!

I will post more details later, I just wanted to post the GREAT news.

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.

Discharged

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.

Out of surgery

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

Ready?

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

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.

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.

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".

http://www.braintumour.ca/5176/childhood-cancer-awareness-month
https://www.facebook.com/kidscancerawareness

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!

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.  http://www.lorrainefontaine.etsy.com/

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:  https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2216273&langPref=en-CA#&panel1-1

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

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.

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!

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.

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:
https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2216273&langPref=en-CA#&panel1-1

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. 

$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.

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.