Ty’s courage

It was simply a sore throat… swollen glands…  possibly mono.  How on earth did three visits to the walk-in clinic over Christmas break and two visits to Alberta Children’s Hospital over a sore throat become cancer?  How was it our vibrant, energetic, active, healthy 13-year-old boy Ty’s blood stream was 90% cancer cells? It was acute myeloid leukemia (AML)—not a good kind of leukemia. January 19, 2009 at 1:47 pm our childhood cancer journey began.

That same evening at 8:59 pm, Ty was admitted. Our family hospital separation began. Ty’s little sister (Tanaya) and his stepdad stayed at home, while Ty and I moved into the hospital. Medical staff warned us it would be a long, difficult journey. Ty underwent the protocol for AML, where the high-dose chemo took him to the brink of death several times over the next 6 months. The intensity of the chemo destroyed his immune system, presenting an ongoing threat of infection thus keeping him mostly in isolation and with few days out of the hospital. School was attended in his hospital room, friends were estranged.

On July 31, 2009, he was discharged – cancer-free. June 4, 2010, after feeling ill, a visit to the oncology unit confirmed our worst fear – the cancer had returned. This time holding a bigger threat. Once again remission would have to be achieved and because the intense chemo did not work, a bone marrow transplant was the only option. Finding a donor would be difficult, because Ty was of mixed race (dad black – mom white) the chances of finding a 100% match were less than 5%. By God’s grace, matches were found and a dual cord blood transplant was received September 17, 2010. The transplant was successful! 

Unfortunately, in March 2011 graft vs host disease (GVHD) began attacking: skin, eyes, mouth and lungs. Everything that could go wrong seemed to. He had infection after infection bacterial and viral, fevers often, making hospital stays long and frequent. Outbreaks of the GVHD produced deep painful crevasses in his hands and feet. Two life threatening visits to the intensive care unit resulted in unanswered testing and “perplexed” doctors. During the third visit to the intensive care unit, September 10, 2012 at 4:18 am, Jesus took Ty home. Seven days later would mark two years cancer-free, after that date, the chances of relapse was next to none.

Ty shared a hope for two things:

1. First – That the gold ribbon, for the battle against childhood cancer, be as readily recognized as the pink;
2. Second – That no child would suffer the way he did. 

The few opportunities he had to raise awareness, he embraced with passion. Speaking at a bone marrow drive, he left the audience with the challenge: “If I do this and little kids have to do it, you can do it!”

The only exposure Ty had with camp was in 2009 and his experience was not what I had envisioned.  Ty had been discharged from only three days prior, the expectation for change, independence and fun was just too much too soon. “Mummy,” he later told me, “we have been in a 10’ x 10’ room together for almost 8 months, you just can’t leave me like that.” He had missed the natural separation teenagers experience. Although physically he was 14, mentally he was not.

The Kids Cancer Care Foundation of Alberta holds so much more for families than just camp. Families in the unit continue to be Blessed with supper every Wednesday with fresh warm pizza. Kids cancer parents volunteer their time to serve, to encourage and to bring HOPE. Wednesday was one day of the week that I did not have to worry about dinner, one night in the week we could all eat together as a family, one night in the week… I just knew.

Ty was blessed when we received a call from Kids Cancer Care, inviting him to attend a helicopter learn and fly. We were both surprized and thrilled to learn he actually got to take over the controls and fly! He spent a day attending a PGA tournament held in Banff. The kids got instruction at the course driving range by some big-time names in golf and later personally met several of the players.

I actually am the one who has been the most involved and received the most from Kids Cancer Care.  From pizza night while in hospital to Bereaved Camp 10 years later, Kids Cancer Care has been a lifeline for me. I have received an enormous amount of support and encouragement from Kids Cancer Care over the 11 years being involved. I have attended Bereaved Camp since it started six years ago, it’s a weekend when families who have lost a child are surrounded with others who have lived the same experience. We bond, we grieve, we celebrate and we heal together. Time to Remember was put in place to celebrate our kids who have gone to Heaven. Every September for the past 7 years Kids Cancer Care invites families to join for a “Time to Remember.” They put an amazing amount of thought and energy into this special evening remembering our kids. Most recently I got involved with the foundation on my bicycle. I went from a couch potato to riding 78 km in a day, raising money for this incredible organization. 

In 2009, I became a member of a club I would wish upon no one; however, I have met the most incredible selfless people through this journey. Kids Cancer Care, which was started due to the horrific disease of childhood cancer, has become an amazing support to so many families in so many ways. 

I don’t know why God allows cancer. I especially don’t understand why He allows kids to get cancer.  However, I believe in His promises. I trust He does the best for all His children whom He loves dearly.   He blessed us with this amazing organization who give and continue to give, an organization who directly supports families affected by childhood cancer everyday—thanks to the generous supporters in our community.

2legit2quit (it’s Ty face book “about”)

Our journey began in August 2017. We picked up Jocelyn from science camp in Drumheller when we knew something was not right. After several visits to the clinic over two weeks, we noticed Jocelyn progressively getting worse. 

She was very pale and weak and just felt crappy. On August 13^th we took Jocelyn in for routine blood work, and then again on the 17^th at the walk-in clinic. We took her in one more time on the 21^st for a glucose fasting test because the doctor thought she could be diabetic. On the 25^th we met with an endocrinologist who instructed us on how to use a glucometer and was going to send us home. Our intuition kept telling us that something was wrong, so we asked the doctor if it could be something else since she did not look or feel well. 

The endocrinologist examined her one more time and advised us to take her for more blood work as she agreed that Jocelyn did not look well. We headed to the urgent care clinic where her blood count indicated she likely had leukemia. Jocelyn was transported by ambulance to the Alberta’s Children Hospital. 

Not even the emergency doctor at the children’s hospital could believe that she was cracking jokes with a hemoglobin count in the 30s!  

A few days later, our world turned upside down. Jocelyn was diagnosed with leukemia. We spent the next few weeks living at the hospital. We had to learn an entirely new vocabulary and so many new procedures. All the different chemotherapy drug names, lumbar punctures, bone marrow extracts, and surgery for the IVAD placement were overwhelming.

Even after we could go home, we had to keep learning about the different assortment of pills, instructions and clinic appointments. But we never let it stop us from fulfilling responsibilities at home and work. 

Through all the phases of treatment and the different challenges that each brought, Jocelyn always grew stronger. As she entered her interim maintenance phase over the holidays, one of the more difficult periods of her treatment, I described it to my friends as brutal and I wasn’t the one going through treatment. At the time, we would stay at the hospital for three or four nights while we waited for the four cycles of high-dose chemotherapy to clear her system before going home. 

But the relief of finally returning home sours quickly. The treatment kicks in and starts hitting hard. I was not prepared for the reality that was: Go to hospital, get treatment, come home and watch Jocelyn weaken to the point where I would wake up and check that she was still breathing. But she always stayed strong.  

In the final months before reaching our goal phase, long-term maintenance, it was difficult for Jocelyn and challenging for us. Procedural anxiety alongside mental and physical strains followed us during every visit. But achieving long-term maintenance was all we were focused on. 

As we went through each phase, Kids Cancer Care was there for us. From the Pizza Nights where volunteers would serve pizza to exhausted and emotionally drained kids and parents, to the PEER exercise program where Jocelyn could blow off some steam and rebuild her strength through exercise. 

It was wonderful to see Jocelyn laugh, have fun and push herself with people who understood. It was not easy to convince her to go, especially when we’d already been at the hospital for hours of treatment, but she was always better for it. 

They also gave Jocelyn the opportunity to go to Camp Kindle. Although she was hesitant at first, she fondly remembers her time there and would love to do it again. She even told me that ‘Maybe someday, I can become a counsellor and help kids like me.’ 

With all the emotional and mental strain from the procedures, chemotherapies, scans and medical equipment, Jocelyn’s thoughts took a dive. She wondered what would happen with her friends and family if she didn’t make it. Jocelyn was scared to voice her thoughts because everyone was counting on her to make it through. She was isolated from her friends since she had a weak immune system and didn’t know if she would ever get back to her former life. That’s a lot for a kid to carry around inside.

Kids Cancer Care programs helped her feel like a normal kid. She was able to go to summer camp where she didn’t need to worry about getting sick. She was surrounded by amazing volunteers, nurses and kids who faced similar struggles. And she no longer felt disconnected. Kids Cancer Care helped Jocelyn work through all the struggles she faced so she can return to a normal life again. She is now part of the Teen Leadership Program and continues to grow every day. 

Earlier in Jocelyn’s treatment I discovered a charity cycling event called Tour for Kids – Alberta with proceeds going to Camp Kindle.  

As a cyclist, I was shocked that I’d never heard about this event and even more shocked that I registered despite adding 25 pounds of stress eating to my frame! But this was the least I could do to support Jocelyn and other kids battling cancer. I would train and finish this 300-kilometre ride, even if it killed me. If my baby girl could endure what she had, then I could do this ride. If my bike squealed in protest, so be it! 

I know what it’s like. You’re constantly bombarded with ‘please donate’ or ‘please sponsor’ from all corners and causes, but you STILL choose to give. 

Maybe in the back of our minds there is still a lingering fear: “it could happen to me or to someone I love” and god forbid cancer ever strike the heart of your world. 

But I promise you this: if that should happen, Kids Cancer Care will be there for you and your family. 

• Omar Pricca, Jocelyn’s dad 

When I was eight years old, I began experiencing unexplainable symptoms. After consulting every dermatologist in the city, my mom thought it might be a good idea to consult an immunologist as dermatologists were not helping. After what felt like thousands of pokes, hundreds of tests and too many hospital stays to count, it was determined through genetic testing that I had a rare gene mutation called TTC7A.

As it turns out, this specific mutation was only discovered a year prior to my diagnosis. I was the oldest living individual with TTC7A at the time, so I was pretty much a guinea pig when it came to treatment. This gene mutation affected my immune system so much that it was only working at seven per cent and could essentially give out at any moment. To find out more about TTC7A and a possible course of treatment, we traveled to Montreal and met with the doctor who discovered this mutation. He was in the process of a research study to find out more about TTC7A and requested that I be part of the study. His research determined that I would need a bone marrow transplant.

Now imagine being 15 years old and being told that you would have to undergo a bone marrow transplant and that you may not survive. Definitely not something the average 15-year-old would have to worry about.

Because of the complexity of my situation, we consulted centres across North America. It just so happened that the immunologist from Texas Children’s Hospital was in Calgary for a conference and I was able to have a short consultation with him. It was then that he recommended his center for the transplant. After careful consideration and a trip to Houston to meet the doctors, we made the decision to go to Texas Children’s Hospital to undergo this journey.

By May 2015, a month after consultation in Texas, my parents and I packed up our things, said goodbye to our family and friends, and headed to Houston. We arrived on Friday, unpacked our apartment and prepared for what was sure to be a long and difficult journey.

On Sunday night, I checked into the hospital so that I could begin chemotherapy the next morning. After 32 doses of chemo spread over eight days, I was given the okay to receive my new bone marrow cells. At 3:30 a.m. on June 23, 2015, I was re-born. I was given the chance at a full life. A life without month-long hospital stays, too many pokes to count and endless medications. My donor, who I did not know at the time, gave me the ability to not worry about getting sick, to not be self-conscious in the outside world and to live a normal life.

This was not to say that my journey ended there. As a result of numerous complications, I was not allowed to eat for three months. I was connected to multiple medications around the clock and had to receive two additional donations from the donor. I remained in isolation for 15 months where I spent up to five days a week at the hospital and had to undergo multiple bone marrow biopsies.

After 15 months, we were finally able to travel home. Once back in Calgary, it was flu season, so I was still not able to go out in public. This meant I was receiving my high school education at home while my friends were in school and I was not able to attend any parties or gatherings.

Fast forward six months, I was at the Alberta Children’s Hospital undergoing my usual monthly infusion and I was told about a Teen Leadership Program that Kids Cancer Care was offering. I was finally allowed to leave isolation and became interested in meeting some people who had gone through similar experiences. I felt alone for so long, therefore it took some convincing from my ever-loving parents. But after orientation, we felt the program would be a great fit for me. I was 18 at the time so I was only able to be a part of the program for a year, but I thoroughly enjoyed the time I spent with this group. It got me out of the house, I was able to socialize with people who could understand what I had experienced, and I no longer felt like an outsider. It was normal to have lost your hair and have a port in your chest. It was normal to know all the medical terms and to be best friends with your nurses. I think what resonated with me the most was the fact that people didn’t pity me when I told my story, the way that so many had before.

I spent the year getting to know the other teens, doing fundraisers and gaining my confidence back. Throughout my treatment I lost my way to loving myself. Being around the people in this group who accepted me for me, really helped to begin the process of self-love and acceptance. Although I was not able to participate in the final trip due to medical circumstances, I can honestly say it was a program that I will remember forever.

I was also asked to be a kid coach for the High Hopes Challenge and was able to help raise money for a cause close to my heart. Having spent only a day at Camp Kindle, I got to experience only a fraction of what other youth got to do over the course of the summer. Seeing how the camp was able to let kids be kids and allow them to forget about being sick was the most amazing part. The focus on fun and normalcy was evident in the attitudes of everyone in sight.

I am proud to say that I am coming up on my fifth anniversary of my transplant and doing better than ever. I still struggle with some lingering effects of my transplant; however, I am on my way to becoming my best self. I have learned over the years that I am not alone. I have a support system and I can openly tell my story. I no longer fear of the outside world and I can proudly say that I am a transplant survivor. I will always be grateful to those who helped me along my journey to become the oldest living individual with this gene mutation. The donor who donated the bone marrow not only gave me life, but gave me a second set of DNA…. How cool is that!?