“Take things day by day.”
Angie Rose Lee
My Story – Short
Hi everyone! My name is Angie Rose Lee and I am 21 years old. Over the past ten years (2008) I have had leukemia 3 times, received 2 bone marrow transplants and am currently on the waitlist to have a double lung transplant. 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. I patiently wait for my lung transplant to complete this medical journey!
The purpose for selling my bracelets is to raise funds for the organizations and hospitals that helped me along the way, and spread awareness about bone marrow and organ donation. The more donors we have, the more lives that can 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 have been waiting for a lung transplant since June 2017. 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 haha!
I’m grateful for being here but its been a struggle to say the least! I salute all the GOOD doctors and nurses who treated me with kindness and respect. A big thank you to friends who stuck by me and of course.. my family 🙂
To Read My Full Story by Year, Click the Tabs Below!
My Story - Long
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- (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 attend.
Before I was diagnosed, I was VERY athletic. Competing in tennis tournaments, was a Tae Kwon Do National silver medalist, avid swimmer, and top tier of my school running team. 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.
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.
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 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. 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.
In the fall of grade 9 unfortunately I 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.
When the cancer returns it has to be treated more aggressively. I would also need a bone marrow transplant to save my life. My siblings were tested but sadly not a match. 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 match, as well as looking at other options and alternative approaches.
These were tough times for me, I tried to not make my cancer an issue and hang out with friends and be as normal as possible. I never wanted pitty or to be treated differently. However, there were times when I was exhausted keeping up with my friends and it can pretty uncomfortable wearing a hot 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 for me! So, in September I moved to Tennessee to start treatment. This was huge news considering so many pass away while waiting. This is something I want 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 this has to be the harshest things I’ve ever went 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. 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. It felt amazing feeling the fresh cool air on my face once again! When you are on the transplant ward you aren’t allowed to leave as it is too risky to be exposed to germs from the environment.
After 9 months I was able to return home to Canada cancer-free and with a new, but still weak immune system!
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.
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 as I thought it was over and done with. I didn’t what to think, it didn’t fully register yet until I looked over and saw my parents crying.
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, Bortezomib. This chemo 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, 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.
I immediately flew to Seattle, Washington to begin the CAR T-cell therapy at Seattle Children’s Hospital. A w
eek after arriving, my blood went through an apheresis machine to separate my T cells. On August 16th, 6 weeks later I received my new engineered cells! It was a wait and see to how they would react to my system. 23 days later my bone marrow aspiration results showed the cancer was gone! Now.. back to St. Jude and bone marrow transplant #2.
Because my mom would be my bone marrow donor, she had to boost her own immune system with medications. In the meantime I started chemotherapy again to weaken my immune system and make room for my moms blood cells.
December 1st was day one of the rest of my life .. again!
Going through this for the second time was a double edge sword, knowing what to expect almost made it worse but I knew I could get through because I had done it before.
There were many complications but I made it back to my apartment on Christmas Eve! Sadly, two days later I was admitted into the ICU with pneumonia.
I rang in the New Year and 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 one that will always stick 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! 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 over this time but one of them being the toughest was my High School Graduation. I would not get the chance to see many of the kids I grew up with again. Also, I wish I could have gone to a lot of my friends 18th birthday parties where they turned the legal age to drink. These are crazy memories I would never be a part of.
After my October check up at St. Jude, I went to visit my sister in Miami. I developed breathing problems and was admitted to the Miami Children’s Hospital ICU for the next 10 days. I was not improving so St. Jude sent an airplane to medivac me back to them. Over the next 3 weeks I was put on a ventilator to help my lungs rest and eventually was well enough to fly home.k
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 eyes and gut/GI track which was extremely painful but is now gone.
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 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 everyday for a 3-6 hour infusion of Amphotercin B – a VERY strong anti-fungal medication that is also called by the nick name “ampho- terrible”, because of how harsh the side effects are; headaches, exhaustion…, it felt like chemo all over again.
This treatment worked, getting rid of my infection but also caused more damage to my lungs. This was when I realized I should start to consider having a lung transplant. After conferring with doctors, it was agreed that this would be my next and only step to get better.
I was now starting the work up for lung transplant. After many tests and doctor visits, plus 30 days straight of physical therapy and educational classes, on June 12 I was put on the active waitlist! I now have to be within 4 hours drive of the hospital in case a donor becomes available. The main criteria for a match is to have the same blood type and height/size. Their 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 is disappointing but I remained hopeful that my call will 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. This is where most of my relatives live. However, the transplant call didn’t seem to be happening so I asked my Edmonton 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 care afterwards. I packed up, had a going away party and on August 5th moved to Toronto, Ontario!
After doing the required tests and procedures for the Toronto General Hospital lung department, I was put on the active waitlist on 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.
As I am writing my blog, I do physical therapy 3 times a week and go to various doctor appointments. I am still using my wheelchair to get around and adjusting to the city. My breathing is stable but I am very limited to what I can do. Toronto seems like a fun city but I have yet to experience a lot of it due to my condition. I keep hoping every time the phone rings it will be my turn.
And thats about it!
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 10 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 or text!
Check back as my story is always changing…!
Also, feel free to leave a comment below!
Angie Rose Lee