Tuesday, November 11, 2014
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.
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.
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".
http://www.braintumour.ca/5176/childhood-cancer-awareness-month
https://www.facebook.com/kidscancerawareness
https://www.facebook.com/kidscancerawareness
Wednesday, July 23, 2014
MRI Clear
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. 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!
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!
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.
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!
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!
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