Take Things Day By Day

From my first diagnosis in 2008 to my life now, this is

My Journey

2008 -

The Start Of It All, Cancer Diagnosis #1

On July 1st, 2008 when I should have been enjoying Canada Day, I was instead receiving the worst news one can hear, “You have cancer”. At 11 years old, I was diagnosed with ALL- (Acute Lymphoblastic Leukemia), and would start an experience that would forever change and shape my life.

I began 6 months of chemotherapy followed by a year of pills and endless doctor appointments. Many days and weeks were spent in the hospital for the treatments, and also complications from my weakened immune system. It was such a tough time- losing my hair, joint/muscle pain, mouth sores, eating through a feeding tube and lots of nausea and tiredness. I only attended a few days of 6th grade as I never felt well enough to go.

Before I was diagnosed, I was very athletic. Competing in tennis tournaments, an avid swimmer, top tier of my school running team and a Canadian National Tae Kwon Do silver medalist. But my love and passion was always for gymnastics. I was awarded Top Amateur Gymnast for my province of Alberta, Canada. I believe to this day that the physical toughness and mental focus of this sport really helped me get through some tough days.

2009 -

Time To Recover

Grade 8 was the best year of my life. My hospital visits were close to done, the internal drug infusion pump (IVAD) placed under my chest in 2008 was removed and my body was almost completely healed. I was in great shape from the volleyball camps I attended over the summer and I was surrounded by lots of new friends. Not only did I make the first string on the school volleyball team but I also was accepted into one of our city’s top volleyball clubs. I started gymnastics again and after just a few classes was invited to join the competitive tramp and tumbling team! In the summer I had a trip to California and Las Vegas (my two favourite places ever!) with my family where I did some serious suntanning and walked the loop of the Grand Canyon Sky Walk. This year I felt invincible, as if the cancer had never even happened. My oncology checkups and hospital visits were now months apart. I was totally myself and in control of my life. The memories from this year I would cherish dearly through the dark times that lay ahead. 

This year was also special as I fulfilled my “Make-A-Wish” trip to the Grammy’s award show in LA. My family were flown out, stayed at a beautiful hotel, got our hair and make-up done and attended the show. During the week long stay we were given tickets to Disneyland and a VIP tour of the Warner Brothers Studio lot. It was an awesome trip and I can’t thank the Children’s Make-A-Wish Foundation enough, Rich Clark for donating the tickets and all  those who give and support this amazing charity. The kids and their families really are 100 percent deserving.

2010 -

My Make-A-Wish Comes True!

Grade 8 was the best year of my life. My body had completely healed, I was in great shape from the volleyball camps I attended over the summer and I was surrounded by tons of new friends. Not only did I make first string on my school team, but I was also accepted into one of our city’s top volleyball clubs! I started gymnastics again and after a few classes was invited to join the competitive tramp and tumbling team! I felt invincible, as if the cancer had never even happened. My oncology checkups and hospital visits were now months apart. I was totally myself again and in control of my life. I would cherish the memories from this year dearly through the dark times that lay ahead.

This year was special because I fulfilled my “Make-A-Wish” trip to the Grammy’s award show in LA. My family and I got all dressed up, our hair and makeup done, and walked the red carpet! (Actually to the side of the red carpet, but still very close to the stars lol) The day before the show I was invited onto the red carpet and interviewed by ET Canada. Best part of the night was the performance by Eminem, Lil’ Wayne and Drake! We were also given tickets to Disneyland and a VIP tour of the Warner Bros. Studio lot. It was an awesome trip and I can’t think the Children’s Make-A-Wish foundation enough and all who give/support this worth while charity. 

2011-

Here We Go Again.. Relapse #2

In the fall of grade 9 (October) my cancer relapsed. I was having lower back pain which brought me into the hospital where I was told the news. I cried not out of fear for what was to come, but for the life I had to leave behind- again. I would miss the entire year at school as I was constantly hospitalized for chemotherapy. When the cancer returns it has to be treated more aggressively, so I was feeling just too physically weak and exhausted to attend.

This time I would also need a bone marrow transplant to save my life.

 My siblings were tested but sadly they were not a match for me. The world database was checked, but again no match. To keep my cancer at bay I did chemotherapy every month while I waited for there to be a potential donor, as well as looking at other options and alternative approaches.

These were tough times for me. I tried not making my cancer an issue and kept hanging out with my friends trying to be as normal as possible. I never wanted pity or to be treated differently. However, there were times when I was exhausted just trying to keep up with everyone. It can be pretty uncomfortable wearing a hot and sweaty wig at a friends sleepover in the middle of summer. Still, I just wanted to be like everybody else.

2012 -

Move To Memphis, Tennessee + Bone Marrow Transplant #1

After 11 months of hard chemotherapy we received a phone call in July from St. Jude Children’s Research Hospital in Memphis Tennessee inviting us down for a consult. There I was told I had an aggressive form of leukemia and would need a bone marrow transplant immediately. The good news was they had several possible matches. So, in September I moved to Tennessee to start treatment. This was huge news as many people unfortunately pass away while on a waiting list. This is something I hope to change going forward.

The first phase of receiving a bone marrow transplant is ten days of intense drugs that wipe out your immune system so the new blood cells can take over. This is followed by three days of full body radiation. To this day that had to be the hardest thing I’ve ever gone through.

On September 27th I received my gift. I endured chemo, radiation, and moving to a different country, all for a small bag of blood containing the stem cells, too tiny for the eye to see. My donor, an American man who matched me on the Bone Marrow Registry, gave me a second chance at life and I am forever grateful and thankful to him. The next few weeks were a mix of good and bad as the new cells settled into my body. I experienced the highest fevers ever accompanied by nausea, chills and body ache. But I got through it all and after 30 days I was well enough to be released from the bone marrow unit. Breathing in fresh air again was a feeling I will never forget! During the transplant you are not allowed off the ward as the risk for infection is too high. For the first time I would see Target House- the apartment supplied to us by St. Jude Children’s Research Hospital for long term patients and their families.

2013 -

Going Back Home, and Remembering Sara Bruke

I stayed in Memphis to recover from my BMT (bone marrow transplant) for the next 9 months. There are many complications and treatments needed as your body is learning to accept the new donor cells. Because the immune system is completely wiped out before the new cells go in, it takes months to be build back up. Living with a low immune system you are very susceptible to viruses, fever and infections so it is a requirement to wear an N95 hospital grade mask at all times while out in public. In the hot southern heat this was unbearable!

Finally on May 14th, I was able to return home to Canada.

I had missed my first year at a new high school making it a challenge to blend in. I would be in Grade ten classes when my friends were all a year ahead of me. That part was hard, I just wanted to be in classes with them and joke around like we used to. But it was still great to see familiar faces and start that “high school” experience!

Academically it was a struggle, my concentration was gone and I had a hard time remembering things. I wasn’t sure if this was from all the pills, chemotherapy or being out of the loop for so long but I really worked hard to keep up.

November arrived and the cold Canadian winter began. I kept getting sick and had a severe case of shingles and strep throat.

A highlight from this year happened in March when I attended an event for the Sara Burke Foundation. Sara was a Canadian trailblazer – a freestyle skiier of the half-pipe and slope style. She tragically passed away after an accident at the X Games in 2012. ALSAC, the fundraising arm of St. Jude asked me to accept a cheque from her foundation and give a speech. It was truly an honour to attend, speak with her amazing family and celebrate a woman who besides being an athlete devoted much of her life to helping others. It was a moment I will never forget.

2014-

Cancer Relpase #3, CAR T Cell Therapy, Bone Marrow Transplant #2

The first week of April I was experiencing the same lower back pain that I had once before. I was scared. I did blood work in Edmonton and the results were inconclusive. The very next day I flew back to St. Jude. A bone marrow aspiration revealed that my cancer was back again. I was in shock because I thought it was over and done with. It didn’t fully register until I looked over and saw my parents crying. I had only been home for 11 months, but would have to find the strength to tackle it once again.

The consensus was I would need a second bone marrow transplant with my own mom being my donor. This process is called a haplo-transplant. Before the transplant I would need to kill all the cancer cells. I tried an experimental chemo drug called Bortezomib. This drug was infused into me 24 hours a day for 30 days non stop. Unfortunately it only got rid of half of my cancer cells. So… on June 9th the intense chemotherapy started again.

Over time my body got used to seeing many of these cancer drugs and built an immunity to them. Therefore, I was given new and different chemo drugs and in higher doses. Some of these drugs I have already reached my lifetime limit on because they are so damaging to the body. It was the hardest chemotherapy I had ever done. And, just when feeling sick isn’t enough, complications and reactions arose such as typhilitis, C-Diff, liver and kidney problems… These complications then require their own separate treatments that also make you sick and have their own side effects. Drugs for drugs from drugs.

Even though getting cured is painful and hard, I was always thankful for it. No matter how many infections or problems I got, the doctors and nurses at St. Jude never gave up on me, and treated each problem with patience, care, and knowledge. On July 7th I was finally done with this bout of the chemotherapy protocol and tests showed my leukemia was reduced to 0.2 percent!  At this point, I could have begun the process for the Haplo BMT  from my mom, but instead we decided to have additional treatment to get that number to 0.0% before transplant.

I immediately flew to Seattle, Washington to begin the CAR T-cell therapy at Seattle Children’s Hospital. This therapy is when a patient’s t-cells (a type of immune cell) are removed and treated in a laboratory. Here, they are engineered to produce an artificial t-cell receptor so they will attack cancer cells. I hope for the future that immunotherapy (using your own body to fight cancer) is more widely developed and used. 

One week after arriving in Seattle, I started the CAR T-cell protocol. My blood went through an apheresis machine to separate my T cells. On August 16th (6 weeks later), I received my new engineered cells! I waited to see how they would react to my system. After 23 days my bone marrow aspiration results showed the cancer was completely gone! On a side note there were some hard moments doing this protocol. I  still had to recieve more chemotherapy to weaken my immune further, and anxiously awaited the cytokine release syndrome (known as “the storm”). All in all though this therapy was much easier than the long, standard chemotherapy protocols. Now.. back to St. Jude and bone marrow transplant #2!

Because my mom would be my stem cell donor she had to boost her own immune system with medication and daily needles. Meanwhile, upstairs I started chemotherapy to weaken my immune system yet again to make room for my mom’s blood cells. Each day for several hours she would have her blood withdrawn through a catheter in her neck where it would be separated through apherisis. Each night this bag of blood was given to me. This continued over 5 nights. I would now be a new blood type, A negative, the same as hers.

December 1st was the first day of the rest of my life…again!

Going through this for the second time was a double edge sword- knowing what to expect made it worse, but I knew I could get through it as I had done before.

There were many complications but after 42 days I made it back to my apartment on Christmas Eve! Sadly, the next day, Christmas Day December 25, I was admitted into the ICU with pneumonia. It was serious and the doctors weren’t sure if I would make it.

2015-

Complications, a Medivac and a New Disease..

I rang in the New Year and my birthday (January 2nd) still in the ICU.

It was my 18th birthday. I had been medically put asleep and on a ventilator in order to let my body rest and heal. After a few days I was slowly woken up.

Some special nurses made me a cake and decorated my room 🙂 this gesture will be one that always sticks with me!

In the months to come I celebrated small victories. I was able to eat solid food after several months, had no complications with my gall bladder removal, and my liver biopsy was negative for GvHD! August 1st would be the day that I returned home to Edmonton, Alberta, Canada. One year, and four months from the day I had left.

I missed many things while I was gone but the toughest one was my high school graduation. It would be my last chance to see a lot of the kids that I had grown up with and be in everyone’s photos. Also missed were my friends 18th birthday parties, (in Alberta you are at the legal age to drink at 18) so there were crazy times talked about that I was not part of. It was all pretty hard to go through, especially in the age of social media, but at the same time you are grateful to be alive…so then the guilt begins that one should not be feeling too sorry for themselves…

After my October checkup at St. Jude I went to visit my sister in Miami. Three days into the trip I was having fever and shortness of breath. I was then admitted into Miami Children’s Hospital ICU for the next 12 days. My condition was worsening so the call was made to have me medi vac’d back to St. Jude. Once there I was put in the ICU and sedated for three days to help my lungs rest. Eventually, after 5 weeks I was well enough to fly back to Edmonton in December. Not quite the vacation I had in mind lol. 

By the end of December my breathing got worse and a lung biopsy revealed Graft Verse Host Disease. GvHD is a condition where the donor cells (my moms stem cells) view my cells as being foreign and attack them. There are many types of GvHD you can contract (eyes, skin, liver, etc). Earlier in the year it also affected my eyes and gut/GI track which was extremely painful but had resolved.

One week after the lung biopsy my chest tubes were pulled and my lung collapsed (pneumothorax). This was a scary moment for me because I could not breathe and code blue was called. Because of this I would spend another Christmas and birthday in hospital to recover.