Take things day by day.
by Angie Rose Lee
Year by year in the tabs above, you can read about my nine year battle with Acute Lymphoblastic Leukemia.
This journey has been more difficult than I could have ever imagined. Hearing those words “You have cancer” is bad enough once… but I had to hear it three times all before the age of twenty. So instead of spending my childhood and teenage years like a normal kid should, worrying about grades, gymnastics tryouts (which was my passion), or a first date, I was worried about much scarier things… Like having to face two bone marrow transplants, chemo and radiation, heart surgeries, moving to a different country for treatment (twice), being a test subject for experimental trials, and lastly, facing an irreversible lung disease for which I will need a double lung transplant this year (2017). However, I find that the hardest part of this journey so far has been in finding a way to live normally again.
This is where the bracelets come in! Strangely enough, the truest happiness I have felt since my diagnosis has not come from fixing my own problems, but in helping others with theirs. The purpose of Journey Jewellery is not only to raise awareness and funding for cancer research, but also serve as a reminder to cherish life, respect everyone fighting all types of struggles, and honor the amazing people I’ve met along the way.
Hi there my name is Angie Rose Lee. 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 Leukemia (Acute Lymphoblastic Leukemia), and embarked on a journey no child should ever have to experience.
Shortly after this devastating news, I began 6 months of chemotherapy followed by a year of pills and endless doctor appointments. It was a tough time- losing my hair, joint/muscle pain, mouth sores, eating through a feeding tube and lots of nausea and tiredness. My weak immune system forced me to stay inside during this time and sent me to the emergency room with fevers quite often. I only attended a few days of 6th grade, watching my friends play sports and enjoy their last year of elementary school from the sidelines, too sick to join in.
Before I was diagnosed, gymnastics was the sport I decided to commit my life to. I spent countless hours at the gym perfecting my tumbling and swinging through the air on the high bars. My top achievement was winning the award for Top Amateur Gymnast in my province of Alberta, Canada. Gymnastics, like cancer, requires a lot of focus and physical toughness, but my dream of one day competing in the Olympics motivated me to continue challenging myself. Click here to read on.
September arrived and I was excited for grade 7. It was my first year of Middle School and I felt like a new chapter in my life was beginning. At first it was difficult to keep up with the schoolwork. I had completely missed everything taught in grade six, so I was behind. But, I worked hard and within a few months not only did I catch up, but I was receiving some pretty decent grades. However, it didn’t take long for athletics to once again become my focus, and I found myself trying out for the Junior Volleyball Team just months after having my cancer go into remission. Unfortunately it just wasn’t to be this year and I got cut but I would not get discouraged. I practiced twice as hard to prepare for the next school year. Click here to read on.
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 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 club teams! And, after a couple of casual sessions at my old gym, they invited me to join the competitive tramp and tumbling team! I felt invincible, as if the cancer had never even happened. 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. Click here to read on.
In September of grade 9, I began to experience pain in my lower back. Thinking I hurt it at gymnastics, I ignored it, but it only got worse. My mom took me to the emergency room to have it checked out, and we received what we prayed we wouldn’t hear. My leukemia had returned. I cried not out of fear for what was to come ahead, but for the world I had to leave behind. Friends, sports, school… Everything a teenager should have would be taken away from me, once again.
When cancer returns, the treatment has to be more aggressive. That meant not only more chemotherapy than before, but a bone marrow transplant too. This is the process where my stem cells get eliminated by medicines, and new ones, taken from someone who matches my genetic makeup, are put in as replacements. My siblings were tested as donors for the bone marrow transplants, but sadly were not a match for me. It hurt them, because they really wanted to help me. The world donor registry was checked but, again, there were no matches in the database. The doctor said being half-asian, half white, made finding a match almost impossible.
That day I got home and cried and cried. My chemotherapy and lumbar punctures continued the entire year to keep the cancer away while we searched other options and alternative approaches. I lost all of my hair, was constantly tired, sick and worn out. I did manage to spend time with friends and have sleepovers, but I always wore an itchy wig to hide my head, even in the hot summer. My friends had never seen me bald and I wanted to keep it that way. I never asked for anyone to visit me in the hospital either. I didn’t want to be seen as being a “sick girl” or for anyone to take pity on me. Click here to read on.
After 11 months of harsh chemotherapy we received a phone call in July from St. Jude Children’s Research Hospital in Memphis Tennessee. My dad had been contacting hospitals for help all over the world and this hospital had called us back! They invited my family down for a consult and away we went.
The doctor’s opinions were a mix of good and bad news. Firstly, I would in fact need a bone marrow transplant, and it had to be immediate. The chemotherapy I had been doing for nearly a year now would not keep my cancer away much longer. The good news was they had found several people on the registry who had matched me! The process would be far from easy, and I would be doing it in all in Tennessee. So, although I was happy to be at this amazing hospital and have hope for a full recovery, I was nervous about living somewhere new, away from my friends, family and home.
While most kids were packing their books and picking out back-to-school outfits for their first day of high school, I was packing for a nine month stay at St. Jude. Our apartment was small but cozy and the people in our new circle were so kind. It eased my nerves for what was about to come.
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, where you are put into a big machine in a room with lead walls to contain the dangerous rays that I was being zapped with. It made me very sick but having no choice you have to press on.
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, a 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. After 30 days of resting and letting the new cells settle into my body, I was well enough to be let out of the bone marrow ward, to go outside, and to our new apartment in Memphis. Click here to read on.
After a long and difficult 9 months, my new immune system was fully functioning, making me cancer free and able to return home to Canada in May! However, still weak and on a lot of medicines it was hard to continue as a normal 16 year old. It’s not easy having to pick up the pieces of your life time and time again. Friends change, they move on, sometimes even stop talking to you altogether. It hurts so much but you just have to keep on going… Keeping busy helps and I did just that by getting back into the gym and trying to get back into shape.
As September came around I enrolled into high school as a 10th grader, a year behind my friends. It was so hard doing schoolwork after two years of being sick. I forgot how to study and had a hard time concentrating. Many hours were spent at the kitchen table and I did achieve pretty good grades, despite how unhappy it made me. November arrived and the weather was very very cold- another long Canadian winter. Unfortunately I kept getting sick – shingles, strept throat, colds… Click here to read on.
On the week of April 10, I experienced the worst day of my life all over again. Pain in my lower back. The pain that meant cancer. Fear rushed through my veins as I waited for the doctor’s results. They came back inconclusive, so we flew to St. Jude to have a more thorough examination. But it only confirmed what I knew was already true. The cancer was back. The past two years I spent fighting tirelessly meant nothing.
My world turned dark and I cried for two days straight, wondering what I had done to deserve this. I wished over and over again that it was all just some messed up dream, and I could wake up and return to volleyball and gymnastics and a normal life again. But it wasn’t. This was my reality.
The pain in my back became intense as the white blood cells took over the marrow in my bones, I couldn’t help but to scream in pain for hours. It felt like being stabbed over and over again. The consensus was I would need a second bone marrow transplant, but this time the donor would be my very own mother. This procedure is called a Haplo-transplant. After this was decided, we started chemotherapy once again. I was asked to participate in a study with a new experimental drug called Bortezomib. Here, a steady 24 hour infusion of the medicine was added to my bloodstream for 30 days, and it could possibly destroy my cancer more effectively than traditional drugs. But, it only had a 50 percent success rate, and it did not work for me. So on June 9 I started intense chemotherapy, again.
Over time, your body gets used to seeing some of these cancer drugs and builds an immunity to them so that they don’t work as well. So, you have to take more of it and add some different ones if you can. Some drugs I have already reached my lifetime dose of 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 arise 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, you can’t help but to be 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 was ready for the Haplo-transplant from my mom, but instead we decided to have additional treatment.
Seattle Children’s Hospital was offering a therapy called the CARs T cell Immunotherapy program. The therapy requires doctors to collect T-cells – white blood cells that attack the cells infected with microbes they deem foreign – from cancer patients. The cells are then taken to a lab where they’re engineered to grow receptors that recognize tumor cells. Once T-cells multiply, they are then injected back into the patient to hopefully destroy the cancer. So, we packed up once again, and moved to Seattle for three months to have this new treatment. After I received it, tests showed I had no trace of leukemia at all. It worked!
We enjoyed Seattle very much, and because my chemotherapy was kept light during this time we were able to enjoy Pike Place Market, the Original Starbucks, and University of Washington Village. Often people would donate Seattle Seahawks tickets to Ronald McDonald House so I saw my first NFL football game! Loved it! Go Seahawks!
When we returned to Memphis, it was straight back to business. My mom had to receive many needles that caused her body to produce extra blood and stem cells. I had started chemo again to destroy nearly all my cells to make room for my mom’s.
December 1st was the day of my Haplo bone marrow transplant. I received the stem cells over two days and lastly her NK cells (natural killer) on December 6. All this new material shocked my body and I was very ill. Headaches, fever, hallucinations from my pain killers, nosebleeds, body rashes… Unfortunately, things didn’t improve, and I spent Christmas in the hospital with severe pneumonia. I was put in the I.C.U. and had a surgery to place two tubes into my ribs in order to drain out the 4 liters of fluid that was filling my lungs. I didn’t wake up for three days. Click here to read on.
Most teenagers rang in 2015 with a New Years party, but I celebrated with the removal of my breathing tube. Slowly I began to wake up but could not speak. My throat was so dry and I was extremely disoriented.
The following day, January 2nd, was my 18th birthday. In Alberta, it’s a big deal because its when you become a legal adult. I wish I could have celebrated it at the bar with my friends, having my first legal drink of alcohol, but instead I was still recovering and just too weak and tired. I did gather enough energy to open some gifts and the hospital even baked me a cake! I was discharged January 14 and went to the housing for long term families called Target House.
Although my transplant was successful, it came with many complications. An endoscopy and colonoscopy revealed that I had Graft vs. Host disease of the gut.
Graft vs Host disease is a condition where the donors cells attack my own because they see them as foreign. Having this complication in the gut is very painful and can last months. Food is replaced with TPN (liquid nutrient infusions) and with medication it can be controlled. I really missed eating during this time, but on the bright side my clothes were fitting like a glove (haha)!
In April, after 4 months of treatment I was able to be off the TPN and I could now try eating on my own! We celebrated with Gus’s Fried Chicken! A bit risky to eat something so spicy but well worth it!
In June I had 4 operations; two to clean my blocked central line (a small tube inserted into my chest and threads through the veins to my heart) and one to remove my gallbladder. Being on such strong medicines over the last few months was making my liver work overtime. A liver biopsy was performed and the results were negative for GVHD. That night was the Annual St. Jude Prom so even though I was in quite a lot of pain I was still up for doing some celebrating! I wish I could have been at a real school prom with my friends from home, but it was nice to feel even half normal for one night. This is just one of so many special events the ALSAC group who raises funds for St. Jude Hospital does. Truly amazing.
Dealing with physical pain is a lot easier than dealing with mental pain. And, as my body began to heal, the emotional aspects of cancer seemed to hit harder. A huge disappointment I was dealing with was missing my high school graduation. I was so sure I would be home in time to attend it, rent a limo with friends, and take pictures at the dinner and dance, but the doctors decided I wasn’t well enough. I had even bought a dress and everything. It broke my heart not being able to wear it. I began to start feeling so forgotten and alone. Everyone else was moving on and living their lives as planned, but mine was always different and uncertain.
School events, school trips, my friends birthday milestones, sisters high school graduation and my brothers university grad are all events sadly missed. But I should not feel sorry for myself! I am still here while so many aren’t. Ive lost a few friends that I knew at the hospital and it is just so very very sad. Young people should never get cancer-ever.
On August 1st, after a year and four months of being away, I returned home to Edmonton, Canada. To see my house, my room, and lay in my bed again was overwhelming. Nothing had really changed, but I had.
I returned to Tennessee for check ups every few weeks and after my October appointment we decided to go to Miami to visit my sister who attends the University of Miami.
I was so excited to see her, attend a college tailgate, a frat party, and go to the beach, but disaster struck again. After just five days into the vacation I began to have trouble breathing. We rushed to Miami Children’s Hospital where I spent 10 days in the ICU, fevered and with a possible lung infection or pneumonia. A botched central line placement in my arm gave me blood clots in my jugular vein. I would now be on needles twice a day for months to stabilize the clot. On day 11 I was medi-vac’d by a special airplane back to St. Jude. So much for a vacation…
During these 42 days I was also admitted into a psychiatric hospital for one week. This is a complicated story and one I would rather save for another day. Sadly, I was separated from family but I decided to make lemonade out of lemons and took it as a learning experience. I do want to say I met some really special women in there who have had so many struggles. I hope they know I think of them always. The staff were also very kind to me.
My troubles continued at home as my breathing got worse and after one week I was in the hospital again. This is where I would be for most of December and January, missing all the joys of Christmas and the holiday season, again. I had Graft vs. Host disease of the lungs. Somewhat like the GVHD of the gut, my mom’s cells see mine as foreign and are attacking them, causing lung tissue to be destroyed. Having this of the lung is much more serious and much harder to treat. Click here to read on.
2016 was a tough year! It was confirmed that I had GVHD of the lungs and was prescribed steroids and immune suppressants. The steroid (prednisone) helps with lung inflammation but man does it have side effects! My face and stomach became so swollen that I am barely able to recognize myself. Additionally, I have constant joint pain, (some days worse than others), and developed hyperglycemia (temporary type 2 diabetes). Probably the worst part of this steroid is the depression, anxiety and sadness that I often feel. Mood swings and agitation are also a part of my days too often. My goal is to get off this drug asap.
With this lung disease, it was advised that I wear oxygen 24/7 and attend a rehabilitation program (Breathe Easy) at the Edmonton General Hospital. Generally, this program is for the eldery ( 60+), but my lungs were the same, if not worse, than theirs. To try and help my lungs as much as possible, I also began going to a personal trainer at Spa Lady (a Canadian gym company). I tried doing as much as I could on my own to get better, but this all came to a halt when my lung disease progressed anyway, making it even harder to breath. Also at this time I had to miss my cousins wedding in Toronto. My sister and me were to be bridesmaids but she would have to attend for the both of us. Sadly, another wedding and a big school reunion for my Moms birthplace of Weyburn, Saskatchewan were also missed.
Summer was now coming to an end, and I was finally stable enough on my portable oxygen to take a small road trip. First stop, Sylvan Lake, Alberta! Here we got a motel room and watched UFC 202 – Conor McGregor vs. Nate Diaz. A great night with lots of food and drinks! From here we drove to Kelowna, British Columbia. It was nice to finally venture out of my province, and Kelowna is a great city – lots to do and nice hot temperatures! Next stop… Vancouver! We spent 10 amazing days here; shopping, sight seeing, eating and relaxing. One event we wanted to attend (again) was PAX (a gaming convention in Seattle) but it’s always tricky to cross the border into the USA, especially without health coverage. We debated for days and finally chose to go but for just the day. It was a good decision as the convention was great! I regret not visiting Seattle Children’s Hospital and my doctor and nurses but there just wasn’t time. I’ll be back though! The whole trip was excellent and some R&R was well needed! We enjoyed our trip so much we started apartment hunting for a possible move in the near future.
The year was coming to an end and winter was approaching. Still struggling with my breathing, I wasn’t seeing many of my friends individually. So, I planned a Halloween party! However, it came with a lot of cons as I can’t drink much with my medication, and still have to be careful of germs. The party was a lot of fun and gave me an excuse to decorate the house and bake tons of food! Not going to lie, I was disappointed that only half of the people I invited showed up. And, while it’s nice to catch up with friends, it’s also difficult to realize how much I’ve missed out on.
In late November, I began to have abdominal pain constantly and was in and out of the emergency room multiple times. Eventually I got a CT scan, but instead of resolving my stomach issues, it showed a fungal infection in my lungs. The next 60 days after this would be harder than I could imagine.
Amphotericin is the drug that would be used to treat the infection. Its nickname is ampho-terrible from all the awful side-effects it causes. Firstly, I had to be at the hospital to receive it. This would take from 3-7 hours everyday for a minimum of two months – no days off! It caused me nausea, headaches requiring me to need I.V. dilaudid (hydromorphone), extreme body aches, and lots of fatigue. It felt like chemo all over again. I was in-patient for two weeks while receiving this drug, causing me to miss Christmas, New Years, and my 20th birthday. Yes, this is the third year in a row that I have spent sick, in a hospital, missing all three :(.
This is a wrap up of 2017.
January continued with amphotericin infusions everyday for hours on end. The side effects were harsh, reminding me of chemo days. Treatment eventually ended in February where I was told the fungal infection had improved. I was happy for it to end! About this time my breathing started to get worse. After meeting with the lung transplant team, I agreed it was time to start the work up to get on the wait list for transplant.
March and April were busy months meeting with all the various specialists. The good news was that I met all the criteria and would be a good candidate. During this time, I developed diabetes from the prednisone and high blood pressure.
In June my physical rehab began at the University hospital from 8am-12 noon, and would last for one month. It was tough to keep up with all the exercises (cardio, weight training) but as the month went on there was definitely improvement! At this time, I officially became “active” on the lung transplant list. This means if a call came in one hour or one year, when there’s a pair of lungs from someone my height, blood type and tissue matching, I would likely get the call to come into hospital.
I was hospitalized twice over the summer with stomach problems and liver issues from my medications. I also received my first set of Botox injections for my headaches in August and noticed a real improvement.
September 15 – Got the call!
It was a Friday afternoon and I was sitting in the car when the lung transplant team called. They told me they had a donor and the surgery would be the next day. I had dinner with my family and quickly packed up. The next day arrived and I completed all my workup. The donor family took family off life support at 5 pm, but this person did not proceed to death as expected. This is called a “dry run” and there would be no transplant. I was disappointed, but happy for the family and their loved one.
October was quite the busy month! I got cataract removal surgery on both my eyes two weeks apart. I also got my braces put on for a third time! Both times my cancer came back I would have to have them cut off for risk of infection.
December was a great month! It was my first Christmas at home and not in a hospital in 3 years! I started walking more when I did my Christmas shopping, but not having walked much since my second transplant, it really took a toll on my hips. I started physical therapy (cupping, acupuncture, ultrasound, etc,) but the pain continues. All in all I can’t complain as it was still a great December.
When I look back on 2017, it was filled with a lot of hospital stays and medical appointments. I’m on the right track for getting my life back by being on the lung transplant list. My call can’t come soon enough! I hope to get out of my wheelchair more often, get some strength back and be as healthy as I can – haha. I’m hoping 2018 is my year!
To follow along more closely, please visit my blog.
I am forever grateful to a number of people for helping me in my life. To see my acknowledgements, please click here.
There are just so many people to thank that have helped me on my journey:
To our doctors in Edmonton – Dr. Tapparia, Dr. Ritchie, Dr. Belda, Dr.Chen, Dr. Woynoroski, Dr. Stewart, Dr. Alvarez, Dr. Mah! You are all excellent, thank you for caring. Tracey, Cathy – all of you at the Cross Cancer Institute.
A special shout out to all the special doctors on the Lung Transplant team and my coordinator Gilda Frizzel
The staff at St. Jude Children’s Research Hospital:
Dr. Leung, a brilliant man who has saved many lives, he gave us that first phone call – thank you !
Dr. Ziga, a special person who did our first transplant and saved us in Miami too.
Dr.Hartford, a friend who did both transplants, knows how to listen and really cares.
Dr. Bhojwani, another smart woman who lives for helping others.
Dr. Triplett, a kind man who has helped us in tough situations.
Danny Thomas, founder of St. Jude Hospital, who had a vision and made it a reality.
ALSAC and Mr. Shadyac – the man behind the fundraising who makes this hospital a reality. He always takes the time to say hello and chat.
Staff at Ronald McDonald House and Target House for giving us a home while we were away.
Lastly my friend Katie – whose hugs go a long way.
The whole hospital and each and every department is over-flowing with the kindest people ever.
I appreciate all of the donors and contributors to this hospital who without them St. Jude would never exist.
The staff at Seattle Children’s Hospital: Dr. Gardner and her team. You took us in wholeheartedly and gave us excellent care. Your calm demeanor and expertise put me at ease. I will always be patient #10!
Juno Therapeutics Lab who engineered my T-cells!
To my family, words aren’t enough… Thank you for your love. Erich, my brother who graduated engineering, immediately got a job and quit 5 months later to to be with me, thank you. Maggie who gave up a semester of high school in her final year to be with me in Memphis; and for visiting each Summer, Christmas and Spring break while your college friends were on trips having fun – thank you. To my dad for finding me help when nobody else could and supporting me ever since, and my mom who has never left my side throughout this journey. She is my everything. From being my nurse dealing with my pills and bandage changes every night, to my best friend who listens and comforts me everyday. I truly wouldn’t have been able to do this without her. To my aunts, uncles and extended family, thank you for your caring and support.
Lastly, I have to say:
Appreciate each and every day, all the little things…
Appreciate others and be empathetic. Don’t assume they are okay or have lots of support – maybe they don’t. Be a good friend.
On a final note:
Thanks for listening!