Chapter 1

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Chapter 1

Diagnosed with Leukemia
Make-A-Wish Trip
Relapse with Leukemia

Going to St. Jude Children’s Research Hospital
Bone Marrow Transplant # 1

Cancer Relapse # 2
CAR T-Cell Therapy
Bone Marrow Transplant # 2

Diagnosed with Lung GvHD
Moving to Toronto
Lung Transplant & Stroke

2008

Being Diagnosed with Leukemia

july 1st, 2008

On this day I received the worst news a person can hear, you have cancer. At 11 years old I was diagnosed with ALL, Acute Lymphoblastic Leukemia.

Being a very active kid it was noticeable that I was tiring easily and feeling short of breath. Joint pain and headaches led me to many many doctors but never a clear answer (ear infection, flu, jaw pain from chewing gum… lol). Eventually my parents demanded a blood test and that same day the results came in. I was told to go to the Emergency Room immediately. 

“As a happy carefree 11 year old, I didn’t even know what cancer meant and never thought it would happen to me. I often blamed myself and questioned what I could have done differently. Quickly I was reassured, this is never the case, childhood cancer just happens. 
My naivety was also a blessing. Never did I think about the worst case scenario and just concentrated on getting back to my old life.”

After being admitted into the Stollery Children’s Hospital in Edmonton Alberta, I would immediately begin chemotherapy 
My leukemia protocol would consist of 3 stages; induction, consolidation and maintenance.
Within the first days of treatment I surgically had an IVAD put into my chest and NG (feeding tube) to supply liquid food nutrition.

Chemotherapy is the use of drugs to kill cancer cells. It works by keeping the cells from growing, dividing, and making more cells. Your doctor will devise a plan depending on the type of cancer, the stage, your age, overall health and your health history.

IVAD:
A small device is surgically placed under the skin (usually in the chest or arm) where the catheter tube is placed inside one of the large central veins that takes blood (medicine) to your heart where it will then be pumped throughout your body

Nasogastric Tube (NG Tube):
A  flexible tube of rubber or plastic that is passed through the nose, down through the esophagus, and into the stomach to deliver liquid nutrients and medicine. Replaced every 30 days.

The first 4 weeks were the most intense in order to kill the leukemia cells. The chemotherapy brought on side effects I never thought possible such as jaw pain, mouth sores, severely sensitive skin  (like a sun burn) and extreme mood swings. During this time I also lost my hair which was hard to experience as well. 

Hair Loss: Chemotherapy treatments can’t tell the difference between cancer cells and healthy cells. As a result, healthy cells get killed in the process including the hair cell. That is why most cancer patients have no hair.

The hospital became my second home. I would endure long stays when I was receiving chemotherapy. Other times it would be a visit to the cancer day ward for check ups, bloodwork and less evasive treatment. 

My Experience:

As hard as it was to miss my last year of elementary school and not be able to do the things I loved like gymnastics, I learned to adapt to my situation. I used this time to try new hobbies like cooking and  making bracelets.

May - September

2009

Maintenance & Recovery

Within 10 months I had completed the induction and consolidation phase and was officially on maintenance!

april 5,

This was the last phase of the leukemia protocol and one step closer to my old life! I felt a huge weight come off my shoulders.
No longer would I need the intense chemotherapy sessions as well the long hospital stays. 
I would continue monthly treatment in the day ward receiving lumbar punctures with chemotherapy (methotrexate) and bloodwork monitoring (CBC and Blood Chemistry Panel). 

A lumbar puncture or spinal tap is a procedure where a hollow needle is inserted into the space surrounding the spinal column in the lower back to withdraw some cerebrospinal [CSF] fluid for testing or to inject medicine.

Post Cancer Issues (Neutropenia, Hair Loss, & Avascular Necrosis)

Although I was done with the hardest parts of treatment, I was still dealing with post-cancer issues. 
Because of my heavy steroid protocol, I developed a condition called Avascular Necrosis (AVN) in both knees. This was painful and limited me physically.

AVN: The death of bone tissue due to a lack of blood supply to that area. It can lead to joint replacement in the future.

The chemotherapy I continued receiving lowered my neutrophils often making me neutropenic. When cancer patients have a fever it is a serious medical emergency and requires hospitalization. Fever may be the only sign that you have an infection and this can be life-threatening. This made me cautious about starting school and being in a crowded environment again.

A type of white blood cell that protects your body from infection. When the level is low, your immune system weakens and your body is less able to defend itself against bacteria, viruses, and infections, including fever. When your neutrophil count is below a certain level you are neutropenic. 

Going back to School

I was nervous going back to school after missing my grade 6 year, but mostly I was excited for a fresh start. Just wanting to blend in, it was uneasy when students already knew my name or heard about my story. My hair went from long and straight to short and curly which made me stand out even more!

Although I missed many days of school from fatigue, I still wanted the full Jr. High experience. I even tried out for the volleyball team but sadly didn’t make it. That being said, it felt nice to have normal adolescent problems again. Worrying about tryouts and homework was way better than waiting on bone marrow test results!

2010

The 52nd

Grammy Awards

Music has always been there for me in good times and in bad. Not only was listening to the iPod my favourite thing to do but it was the only entertainment I had! Wireless internet, Netflix and Spotify weren’t around yet!

About My Wish...

At the beginning of my treatment I was approached by Child Life services at the hospital informing me that I was eligible for a “wish” courtesy of the Children’s Make-a-Wish Foundation of Canada. 
The choice came easy after a generous donor approached the foundation offering tickets to the 52nd Grammy Awards in Los Angeles! 

January 26th

We boarded our flight to Los Angeles, California. We would spend the next 7 days going to Disneyland, a VIP tour of the Warner Brothers Studio lot, window shopping on Rodeo Drive and of course … The Grammys!

We stayed downtown at the famous Biltmore Hotel where we met our donor and thanked him for his generosity!

Showtime!

January 31st finally arrived! We started the day like VIP’s getting hair and makeup done in our hotel room! I put my Betsey Johnson dress on with matching heels (my first time … ouch!) and off we went!

We walked the Red Carpet alongside stars like Rihanna, Taylor Swift, Lady Gaga and Miley Cyrus. Cameras were not allowed so the memories are kept within me. 

The show was amazing!  My favourite performance was Drop the World and Forever by Drake, Eminem, and Lil Wayne. My dad was ecstatic to be in the same building as Ringo Starr! 

Fun Fact: Not only was this my first Grammy’s but it was Drake’s and Justin Bieber’s first time too! 

Year End Wrap Up

By the end of the year I felt back to normal! I felt blessed to have overcome such an ordeal with no long term damage or repercussions. Plus.. I made the school volleyball team! 

On November 27, 2010: 2 years, 4 months, and 23 days after my leukemia diagnosis I underwent surgery to remove my IVAD, ending a difficult chapter in my life!

Interviewed by Etalk!

A Special Dinner:

After the show, my makeup artist told us to go next door to the Palm Restaurant where she set up a surprise dinner for my sister’s birthday that same day.
After being seated at “Heidi Klum and Seals regular table” we were told to order anything off the menu and it would be all taken care of! (My family loves food so this was a treat). All of a sudden… the restaurant erupted in cheers. Taylor Swift had just walked in after winning Album of the Year for Fearless! The whole night felt like I was living a fairytale 😉

2011: 
CANCER RELAPSE

My biggest fear had become a reality when I was told my cancer had returned. 

It was the middle of the night when I experienced a sudden, sharp pain in my lower back., NEVER had I experienced such an excruciating pain like this before. Not once did I think it could be my cancer returning. An ER visit then confirmed the worst.

“I cried not out of fear for what was to come, but for the life I had to leave behind - again.”

This was a terrifying time in my life and for the first time since my journey began I felt hopeless and really scared.

Just weeks before my diagnosis I was living my best life. Playing competitive volleyball for a city team, tumbling in gymnastics again and parties on the weekends. 

A cancer relapse meant a completely different protocol than before. Chemotherapy to rid my body of the cancer cells followed by a bone marrow transplant.
When the cancer cells return they are more aggressive and therefore have to be treated more aggressively. I would begin Reinduction Therapy consisting of chemotherapy given by vein (intravenous), by mouth (oral), and into the spinal fluid (lumbar punctures). Not only would the protocol include new types of chemotherapy drugs but much stronger ones as well. This is in hopes that the cancer cell will be “out smarted” and destroyed.

My New Protocol

Step 1: Reinduction therapy with new and stronger chemotherapy drugs
Step 2 Hospital actively looks for a bone marrow match
Step 3 Bone marrow transplant procedure 

Step 1: Reinduction Therapy: New and stronger chemotherapy drugs to outsmart and destroy the more aggressive leukemia cells.
This consists of chemotherapy given by vein (intravenous), by mouth (oral), and into the spinal fluid (lumbar punctures). Not only would the protocol include new types of chemotherapy drugs but much stronger ones as well. This is in hopes that the cancer cell will be “out smarted” and destroyed.

Step 2: Hospital actively looks for a BONE MARROW MATCH. A donor with your similar make-up {HLA-Human Leukocyte Antigen} is needed for the best possible outcome.

Step 3: Bone Marrow Transplant : A procedure that infuses healthy stem cells into your body to replaced damaged or diseased bone marrow.

Siblings are tested first with a standard blood draw as they have a 25 percent chance of being a match. If they are not a match the world data base is then checked. Sadly after both my siblings and the world data base were checked no match was found. To keep my cancer at bay I would continue monthly chemotherapy and hope for new donors to be added to the system. 

It was time to look aggressively for alternative treatments 

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