Hi everyone! My name is Angie Rose Lee and I am 24 years old. Over the past eleven years (2008) I have had leukemia 3 times, received 2 bone marrow transplants and just recently received a double lung transplant (March 30, 2019)! I have gone through treatment in Canada and the United States at five different hospitals. The road has been long and difficult, but today I am cancer-free and breathing with new lungs!
The purpose for selling my bracelets is to raise funds for the organizations and hospitals that have helped me along the way. I also want to create awareness about bone marrow and organ donation. The more donors we have, the more lives that can be saved. When my cancer returned in 2012, my oncologist told me I would need a bone marrow transplant. The world database was checked and there was no match for me. I had to continue chemotherapy and hope a match would come my way. This is why it is so important to be swabbed as you could be a possible match for someone and save a life. I also want to spread the word about organ donation. I waited for my lung transplant for almost 2 years. There just aren’t enough donors and so many waiting for transplants of all kinds. One donor can save up to 8 lives.
I never once thought this would happen to me. But it did. I was an active, healthy kid, and an outgoing teenager. I loved sports of all kinds – gymnastics, tennis, volleyball, tae kwon doe, and on and on. My friends and I loved the weekends and late summer nights!
I’m grateful for being here but its been a struggle to say the least. I salute all the health care professionals who treated me with kindness and respect. A big thank you to friends who stuck by me and of course.. my family 🙂
On a side note, there are many things I have left out-details about operations, procedures, medicines, feelings/emotions. So much has happened in the past 11 years that it would impossible to cover it all. I’ve kept my story as short as I can so more people can read it without being overloaded with too much information.
I’ve tried to mention the main points of my journey but if anyone has questions for me, is going through a similar experience, or just wants to say hi I am always here to talk!
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.
Time To Recover
This year I was back in school for grade 7. I was feeling better but often missed from being tired. It was great to see old friends again and it felt like life was getting back to normal!
Because of the steroids I was on for the leukemia protocol I developed a condition called Avascular Necrosis of the knees. This is where the blood supply is cut off to a certain area and the bone eventually dies. I was told that I would eventually need knee replacement surgery. This is a very painful condition. Also my physical strength was lacking and unfortunately I didn’t make any of the school teams I tried out for. Maybe next year!
Fun Fact: Friends of mine who were big Justin Bieber fans dragged me along to an autograph signing at West Edmonton Mall. He was very nice to me and we tlaked about my Make-A-Wish Trip to the Grammys later that year. He would be going for his very first time as well!
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.
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.
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.
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. Your immune system is completely wiped out before the new cells go in, so it takes months for it to build back up. Living with a low immune system you are very susceptible to viruses, fever and infections. It is a requirement to wear a 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.
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.
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 it is worth mentioning some hard moments during this protocol. I still had to receive more chemotherapy to weaken my immunity further, while anxiously awaiting 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 her 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
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 beautiful 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 on TPN (IV liquid nutrients to substitute eating food orally), had no complications after 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.
Warning: Some photos may be disturbing!
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I started medication for my new lung disease, high dose prednisone (steroid) and immune suppressants. The steroids caused a condition known as “Cushings syndrome” where my face and abdomen become very swollen and bloated. I was barely recognizable. I also developed diabetes and cataracts in both my eyes which had to be surgically removed. Prednisone is an intense drug, not only physically but mentally it gave me a lot of mood swings and depression.
My lungs worsened and I was put on canisters of oxygen to help me breathe at night, but eventually this would become 24/7. At this time I would also start using a wheelchair more to get around as I couldn’t handle the exertion of walking for very long.
As winter approached I continued to have breathing problems. A CT scan of my lungs showed a cavity revealing a fungal lung infection. I would spend the next 6 weeks going to the hospital every day for a 3-6 hour infusion of Amphotercin B. This is a VERY strong anti-fungal medication that is also called by the nick name “ampho- terrible”, because of how harsh the side effects are; extreme headaches, exhaustion… it felt like chemo all over again.
The treatment worked, my infection was gone but more damage was caused to my lungs. A meeting was set up with a Respirologist where I was told to start considering a double-lung transplant. After conferring with doctors and with my family, it was agreed that this would be my next and only step to get better.
Fun Fact: The photos and memories from this year are the hardest for me to reflect on. I did not recognize who I was mentally and physical
I was now starting the work-up for lung transplant. After many tests and doctor visits, plus one full month of physical therapy and educational classes, on June 12 I was put on the active lung transplant waitlist! I now had to be within a 4 hours drive of the hospital in case a donor became available. The main criteria for a match is that the donor lungs have the same blood type and height/size. The lungs have to fit into my chest cavity but can be either male or female.
September 15 – I got my call! But sadly it was a “dry run”. This can happen when the donors lungs are removed, inspected and found not suitable for transplant. It happens quite often, and was disappointing but I remained hopeful that my call would come again soon!
For the first time in 3 years I finally got to celebrate Christmas at home! A great milestone to say the least! I must say it was a tough year but I looked forward to getting my lung transplant soon and having my life back together.
All year I had been considering moving to Toronto after my lung transplant. Many of my relatives live in Ontario. However, the transplant call didn’t seem to be happening so I asked my Edmonton, Alberta lung team if they would be able to transfer my care to the Toronto lung program. Both sides agreed it was a good idea since I would be needing a lot of care afterwards. I quickly had a farewell party to see my friends one last time. On August 5th my mom, sister and I packed up 2 suitcases each and away we went. We stayed at a hotel for the next month until we found an awesome apartment only two blocks away from the hospital.
After doing the required tests and procedures for the Toronto General Hospital lung department, I was put on the active waitlist September 18th! Only on the list for 2 weeks, I was shocked to get a call on October 3rd to come to the hospital as they had found me suitable lungs! But sadly, again, it would be a dry run – AKA a false call.
While waiting I continued to do physical therapy 3 times a week and go to my various doctor appointments. I was still using my wheelchair to get around and adjusting to life in the city. My breathing was stable but also limited my activities. I kept hoping my phone would ring with good news.
With Christmas approaching there were many holiday activities going on in Toronto, the tree lighting ceremonies at Eaton Centre Mall and Dundas Square were amazing. We went to the Jingle Bell Ball concert at Scotiabank Arena, saw the UFC 231 fight and a Toronto Maple Leafs hockey game!
I looked forward to 2019, hopefully getting my lung transplant and starting my new life.
I invited my cousins over to ring in the New Year and my 22nd birthday.
The first two months of the year I was having chest pain and shortness of breath which caused me to be hospitalized. An x-ray showed I had a pneumomediastinum (air bubble in my lungs). I was also experiencing huge headaches caused by extremely elevated blood gas. My condition makes it hard to exhale (blow air out) so carbon dioxide then builds up.
When I was in hospital I got my call number 3 on Feb 14! Again, it was determined the lungs weren’t in the right condition to be transplanted.
The next day I was discharged and the day after that on February 17 I got yet another call – number 4! Again, it was a no go.
It’s pretty discouraging when you get a call that doesn’t end up in transplant. But, you just have to tell yourself that those lungs weren’t the right ones, and not let it get you too down.
Then… one more time…. I got called again. Call number 5 on March 29 just before midnight. In I went. After delays and an overnight stay, I received my double lung transplant on March 30, 2019! My surgery started at 4:15pm and finished 10 hours later at 2am on March 31st. The surgery was successful however my heart stopped beating after the removal of my first lung. At that point I was put on ECMO (a machine that acts as a lung to pump and deliver oxygen to the blood). Pacer wires were also put on my heart to keep it beating regularly and were removed the next day. I spent 3 days in the ICU and 2 weeks in the transplant ward of the hospital. During this time I started to lose sensation on the entire right half of my body. It felt very numb and heavy, like a pins and needles sensation when your foot or leg falls asleep. The vision out of the corner of my right eye and partially in my left was reduced and I saw black spotty patches. An MRI revealed I suffered a 2cm blood clot (stroke) on my occipital lobe. This has been quite hard to deal with, but with any big surgery there are always complications. I am alive and very grateful to the skilled surgeons and team at the Toronto General Hospital.
Over the summer I was hospitalized many times for liver, gut and pancreatic problems. Extremely painful bile duct stones were removed on two separate occasions by a procedure called an ERCP. I developed pancreatitis from one of my immune suppressing drugs so we switched to another. In September and October shingles developed on my legs, stomach and back. The blisters are so painful-I had shingles once before and I hope never again.
Currently (May 2020) I am 13 months post transplant. My new lungs have been doing very well! I am awaiting a hip replacement surgery that was canceled in March because of COVID-19. Once I have the surgery I hope to be out of the wheelchair and walking pain free. Years of steroids have taken a toll on my body and weakened my bones. It will be a huge milestone to regain my mobility, exercise my lungs and start to live a whole life again. As I wean down my prednisone I am hoping the Cushing’s syndrome (the reason I have a puffy face and abdomen) I developed will start to subside. Gotta look good for that insta you know!
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