On December 28th, 2014 our little miracle arrived at our home. He couldn’t wait to come into this world! He wouldn’t even let us get to the hospital to deliver. It was then that we knew we had a determined little guy on our hands! Through the first 10 months of Liam’s life, we watched his progress, his development, and marveled at how smart of a baby he is - a baby with a smile that could melt your heart, a baby who brought us the true meaning of what life is really all about.
Liam never experienced a day of sickness until the early days of November, 2015. It was on Thursday, November 5th that Natasha and I decided we should take Liam to a doctor. Early symptoms were virus-like - a small fever, a little vomiting, and sleeping lots. The first visit was to our family doctor in Fort McMurray. We thought it was a virus and needed to run its course. We were told to go home and give him some Tylenol for the fever. Two days later, on November 7th, we took Liam to the Emergency department at the Northern Lights Regional Health Care Centre. Again, we were told it was a virus and that it needed to run its course.
The following day, Sunday November 8th, Liam had a couple of blisters break out in the temple area of his head and we took him back to the hospital once again. It was then that they ordered blood work and urinalysis, but nothing was found. They told us the blisters were likely his fever breaking and that it should clear up in the next couple of days. On the morning of Tuesday, November 10th, I was getting ready for work and noticed Liam lying awake in his crib. I knew that wasn't like him. Typically, if Liam is awake he wants to be up and playing, so I picked him up and put him in bed with Natasha. I went to work and wasn’t there 20 minutes before I received a call from Natasha saying that Liam’s lips and tongue were moving uncontrollably, and they were on the way to the hospital. Upon arriving at the hospital, I met Natasha there and they took us in immediately. The pediatrician took a quick look at him and ordered an MRI scan and a spinal tap. Prior to getting the MRI, they hooked him up to a heavy antiviral drug in case it was a virus that had spread to his brain. Once the MRI was done we understood that a spinal tap wouldn’t be required and that we would be going back to the emergency department to wait for the doctor to come and discuss the results with us. It was about 15 minutes later when the pediatrician came in to our room at the emergency department and delivered the shattering news that Liam had a mass on his brain and that a medical team was on route to airlift us to Stollery Hospital. At that moment, it honestly felt like someone dropped the world on our shoulders. Our whole life came crashing down.
Upon arrival to the hospital in Edmonton, surgeons were expecting to have to perform surgery right away based on the size of the tumor (9cm x 9cm x 9cm). When they had the opportunity to meet Liam, it was determined that surgery wasn’t an immediate requirement and that they would have a little more time to plan the surgery.
It was determined that Liam would undergo surgery to resect the tumor on Friday, November 13th. At approximately 9:45am, the nurse practitioner came to the waiting area where our family was anxiously waiting news on the progress. The first update was that the tumor was proving to be difficult and it was likely they would not be able to resect the entire mass during this surgery and that based on their findings under the microscope, it was going to be an uphill battle. Not another hour had passed when the neurosurgery team came to update us again. They were there to say that the entire tumor had been resected! What appeared at first to be challenging wasn’t so challenging after all! They came to an area that they thought would be difficult, however, there was a fine delineation between the brain and the tumor and thankfully they were able to lift it out without issue.
Liam spent the next 5 days in the Pediatric Intensive Care Unit, where he was under 24 hour care. He proved to our whole family at that time just how strong he was. Just a short while after surgery he started to follow voices with his eyes. He ate a Popsicle just a couple of days after surgery, and started doing other silly things that Liam was known for.
After 5 days in the PICU, Liam was brought back to the post-surgery floor. This was time for recovery and time to understand the pathology of the type of tumor on his brain. Liam experienced some swelling during this time and there were a couple of anxious moments.
After a few days up on this floor, our family was advised that the pathology was back and it determined the type of tumor Liam has. We were called in to a meeting and were told that Liam has an AT/RT (Atypical Teratoid Rhabdoid Tumour). AT/RT is an aggressive, fast growing and very rare cancer which mainly occurs in children under the age of 3. The chances of getting it are 1 in 3,000,000. In the United States each year, approximately 30 children get diagnosed with this type of cancer. The prognosis is based on many factors such as age, location, metastases (spread), and ability to resect the tumor. The team at Stollery Hospital in Edmonton did tell us that they have had very little success with this type of cancer. However, in Liam’s case there are high hopes and great optimism. They were able to completely remove the tumor, and there was no spread to his spine and kidneys (which are the only other areas to which this type will spread). We were advised that over the next 9 to 12 months, Liam would receive an aggressive chemotherapy protocol.
Liam was placed on the oncology ward at the Stollery Hospital. After a couple of days there, it was determined that Liam would require a shunt to be placed in his head due to the swelling. This surgery went very well, and Liam recovered rather quickly.
A couple of days after the shunt surgery, Liam was discharged for a week so he could return to Fort McMurray and spend some time with his family before returning to Edmonton to begin his chemotherapy. Upon returning to Fort McMurray, he enjoyed a full week at home playing with his toys, living a 'normal' life, and celebrating his 1st birthday.
Liam returned to Edmonton on December 13th, to be readmitted to hospital. On January 11th, 2016 Liam and Mommy traveled to Calgary via medevac for Liam to have a stem cell harvest. Part of Liam’s chemotherapy protocol is to have high dose chemotherapy. This completely suppresses the bone marrow, therefore Liam needs his stem cells to go in after his chemotherapy and rescue him. This stem cell harvesting needs to be done in between his standard chemotherapy cycles, when his counts are the highest. On Wednesday, January 13th, Liam had his stem cell harvesting procedure done at the Calgary Children’s Hospital. The required number of stem cells he needs for his future therapy is 150 million. At first they advised us that there was potential to have to do this procedure a second time if they didn’t get enough stem cells, but just 4 hours into his procedure they had 165 million stem cells!
On Friday January 15th, Liam and Mommy came back to Edmonton. Liam had a couple of baseline tests performed - one for hearing, the other for kidney function. Both came back fine. Also on that day, Liam finally got 'evicted' from the isolation room, after being in isolation for over a month! They cleared him from all viruses, which meant that he could leave his room and go out for walks. On January 19th (just this week), Liam began round 2 of induction chemotherapy.
To date, Liam has proven to be a champion, a true inspiration and a superhero. He is stronger than you could imagine, braver than anyone we know, determined as can be, and happy even on his worst days. He will win this fight, and it is the love, support, prayers and well wishes from all over that will help him get through it. Our family thanks everyone from the bottom of our hearts for the support shown to our son, Liam.
If there is one message to be delivered to any parent out there, it is that you know your child better than anyone - better than any doctor or any nurse. If your child is acting different or is not feeling well, you know it. Be persistent with the medical team and ask questions. We were very fortunate that in just 3 visits to the Emergency department, they found the tumor on Liam’s brain. The average time to diagnosis is between 4-7 visits to an ER.
-Much love from Natasha and Jerry
Jerry and Natasha, I can only imagine what you are going through. My thoughts and prayers are with you and your family, and especially to sweet Liam. He is strong. He is a fighter, and he will get through this thing. It must be such a scary time for you all right now, but I can only hope that your fear and worry is swallowed up by the day to day joy that your little boy brings.
Liam’s journey can be followed on Facebook by searching - #LIAMSTRONG – Liam’s Journey to be AT/RT Free.
The family has also made available for purchase #LIAMSTRONG bracelets. These bracelets are dark grey in color, which symbolize brain cancer. These are being sold for 2 reasons - as a fundraiser, and to raise awareness of brain cancer, specifically in children and infants. Childhood brain cancer is the second most common type of cancer in children, after leukemia. It isn’t heard of often, it isn’t talked about enough, the study and research into childhood brain cancer is not where it needs to be. There needs to be a cure. Wear a #LIAMSTRONG bracelet proudly and share Liam’s story. Please feel free to direct people to the Facebook page so they can follow his journey. Awareness is key in finding a cure.
Liam's father, Jerry says, "We will some day, some way, some how, find a way to thank every single person who has been a part of Liam’s journey in one way or another. Natasha and I have made a commitment, and that commitment is – At the end of this journey, if there is 5 cents left over from the fundraising and support that has been given to us, we will pay it forward to someone who needs the same support we required."
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