Chapter 2
2012
St. Jude Children's Research Hospital & Bone Marrow Transplant #1
As the cold Edmonton winter set in, so did my worries. January, February, March, April… no match for me. I no longer had the strength to “blend in” with my friends. Fed up, bald, nauseous, mouth sores, exhausted and with no hope in sight, I hit my lowest point.
Over the past months, my family had reached out to several hospital worldwide.
Eleven months after my relapse diagnosis, I would finally have a glimmer of hope. I received a phone call back from St. Jude Children’s Research Hospital in Memphis, Tennessee.
July
My parents and I boarded a flight to Memphis, Tennessee to have a consultation with the oncology team at St. Jude.
My Wig
It was shocked to receive some information that I never knew.
I had an aggressive form of leukemia and chemotherapy would never have worked in my situation.
The only chance at survival would be an immediate bone marrow transplant and they already had several possible matches!
"For the first time in a long time I finally had hope"
Memphis, Tennessee
St. Jude Children's Research Hospital
Opened in 1962 because of one man, founder DANNY THOMAS. As a young man in the entertainment industry with a baby on the way, work at the time was scarce. He prayed to St. Jude Thaddeus, the patron saint of hopeless causes and vowed:
“SHOW ME THE WAY IN LIFE, AND I WILL BUILD YOU A SHRINE”
Soon after he found plenty of work and became a big star.
True to his word he created the hospital. His mission:
“NO CHILD SHOULD DIE IN THE DAWN OF LIFE”
September
In September my mom, sister and I moved to Memphis Tennessee to be treated at St. Jude Children’s Research
In September my mom, sister and I moved to Memphis Tennessee to be treated at St. Jude Children’s Research
There is different housing depending on your length of stay for treatment.TRI-DELTA PLACE, (1-7 days), RONALD MCDONALD HOUSE (8-90 days) and Target House for patients needing 90 days or more.
I stayed in all these wonderful places but after leaving the hospital after my bone marrow transplant I would go directly to Target House and would call this building home for the next 8 months.
What is a bone marrow/Stem cell transplant?
A bone marrow transplant is a procedure to replace damaged or diseased bone marrow, a spongy material inside your bones where your body makes and stores blood cells, with healthy marrow. Your blood cells start out as very young cells called ( hematopoietic)stem cells after they mature, they travel out of your bone marrow and into your blood. A bone marrow transplant is also called a stem cell transplant.
Mine would be an Allogenic transplant. It is more intensive because you use a donor’s stem cells instead of your own (Autologous transplant).
Bone Marrow Transplant Protocol – Chemotherapy and Total Body Radiation (TBI):
Phase 1: Chemotherapy
10 days of intense chemotherapy to wipe out the existing immune system so the new healthy blood cells can take over.
Phase 2: Total Body Radiation
3 days of radiation to destroy cancer cells in areas where chemotherapy can’t easily reach such as the bones, nervous system and skin.
How Radiation works: A custom cast is made of your body that will be used during the treatment. The fit is snug and you must remain very still as you are rotated sideways. This is so the laser (radiotherapy) can reach the entire body.
My bone marrow transplant protocol would include chemotherapy, total body radiation and end with the bone marrow transplant.
September 27:
Transplant Day
The day had arrived!
This process was as simple as receiving a blood transfusion. The donor’s stem cells arrived in a bag of blood and infused into me over 2 hours. A nurse would stay with me during this time to ensure there would be no complications. Although receiving the stem cells is “the easy part”, it’s the aftermath that would be the most challenging to face.
Having little to no immune system means extra precautions are taken to protect bone marrow patients. This can feel isolating at times as we are kept in a secure wing of the hospital, closed off to the public in order to protect us from germs and viruses. Family members are allowed to visit and a parent can stay with you always.
I endured chemotherapy, radiation and moving to a different country all for a little bag of stem cells, too tiny for the eyes to see. These cells would potentially save my life. I am so grateful to my anonymous donor who selflessly went through the entire process for me, a complete stranger.
ENGRAPHMENT- Usually happens within the first 30 days. The new cells you have just received move through your bloodstream into your bone marrow. When the cells begin to grow and make new blood cells it means they are working properly now and rebuilding your immune system. White blood cells are the first to entrap, followed by red blood cells and platelets.
Thoughts on the Year
What a year. From having no match and no hope, to moving to a new country and successfully receiving my bone marrow transplant. It was whirlwind to say the least!
There were many highs, many lows and often some breaking points. To this day, total body radiation and its side effects were one of the toughest parts of my journey and will not be forgotten!
2013
Recovery & Home to Canada
Life After a BMT
After my BMT, I would spend the next 8 months living on the St. Jude’s Campus where I was treated on both an inpatient and outpatient basis.
This is a very critical time as your immune system is rebuilding.
It usually takes 2-12 months for your immune system to recover from your transplant. The first year after Transplant is like your first year of life as a newborn baby.
- Steroid & Anti-Rejection: Medications: To suppress the immune system so the new cells will not be rejected.
- Anti-Virals, Antibiotics & Anti-Fungals: To treat and prevent infections
- Imaging – CT, MRI, Ultrasound: To get information about the organs and damage that may have occurred before and after transplant
- Bone Marrow Aspirations: A biopsy taken to check that the new bone marrow is healthy and making normal amounts of blood cells click for what is a bone marrow aspiration(below)
- Blood tests: Done frequently to check blood cell counts.
- When your immune system is rebuilding after a BMT your counts are very low requiring MANY blood and platelet transfusions
- Bone Marrow Aspirations
What it is: Patients are put to sleep by anesthesia while a nurse practitioner or doctor inserts a large hollow needle through the bone and into the bone marrow. Using a syringe attached to a needle, a sample of the liquid portion of the bone marrow is withdrawn.
Many bone marrow aspirations and biopsies are taken to check that the new bone marrow is healthy and making normal amounts of blood cells - COMPLICATIONS- The risk of infection is higher at this time because you have fewer white blood cells than normal. Complications can range from mild to dangerous. Risk of infections, bleeding, anemia, damage to the organs, dietary problems, pain, fluid overload, respiratory distress and GVHD (Graph vs Host Disease) are all things to look out for.
What is Acute Graft vs Host Disease
A major complication to look out for after transplant is GVHD.
Acute GVHD usually happens within the first 100 days after transplantation. This occurs when the donor’s cells sees the recipients cells as foreign and attacks them. More on this later on…
Going Home After Transplant
After discharge you may feel weak and tired for months and even up to a year. While you are happy to be home feelings of anxiety, depression and anger may occur. You will be monitored closely for the first 3 months until blood cell counts are back to normal. After 3 months follow-up will be less frequent if there are no problems. By the end of the first year the immune system returns to normal and the bone marrow produces blood cells normally again. If you are on immune suppressing drugs this may take longer.
Rules for Daily Life
Handwashing and hand sanitizing frequently
Wearing a N95 mask at ALL times except for home. In the hot Tennessee summer this felt unbearable!
Low Bacteria Diet: This is a restrictive diet following a set of rules to lower the risk of bacteria in food/food prep which can lead to infection in your body. No restaurant, take out or fast food.
My Experience at St. Jude
During my time at St. Jude I was able to meet other teenagers each dealing with different cancer diagnosis’. Only able to meet a few times, we shared a bond that not many people would ever understand. I really wish we could have gotten together more but we were just too sick.
Sadly, we also lost a few friends from our group but they will never be forgotten.
Side note: I want to mention that the cancer experience is not what you see on tv or in movies. In my experience, no quirky nurses or hospital romances… It is simply kids and teens trying to get better and live.
May 14
Two plane rides from Memphis Tennessee to Edmonton Alberta, I arrived home after 9 unforgettable months! Checkups would mean flying back to St. Jude monthly until I reached 1 year post transplant.
I would return to school in September after being absent for over 2 years and this was no easy task! Still recovering, I missed many days but always tried my hardest to keep up. Many thanks to my brother and sister who helped me study way past midnight on many occasions!
A Special Tribute To: Sarah Burke
On behalf of St. Jude I was flown to Colorado to accept a check from the Sarah Burke foundation. Sarah was a Canadian freestyle skier of the half pipe and slope style. Tragically she passed away training for the X games in 2012.
For more information on the Sarah Burke Foundation Click Here.
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