My Journey

“Take things day by day.”

Angie Rose Lee

My Story

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. I also want to create 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!

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 🙂

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!

To Read My Full Story by Year, Click the Tabs Above!

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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.

 

Click here for the next year

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 typhilitisC-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.

September 18th I was officially put on the lung transplant list at Toronto General Hospital! To my surprise after being 24 days I got my call for transplant. Unfortunately, it was a false call again. When it is meant to be it will be…

October was a busy month meeting many of the doctors who will be caring for me now that I am living in Toronto. December was a fun month because of all the Christmas festivities going on downtown. I saw three Christmas tree unveilings – Eaton Centre Mall, Dundas Square and Nathan Philips Square.

Erich and my dad visited for Christmas and we went to a Toronto Maple Leaf Game. We had a Christmas together with the relatives on boxing day – all of us together again – it was very special.

I look forward to 2019, getting my transplant and starting my new life.

I invited my cousins over to ring in the New Year and my 22nd birthday.

I was hospitalized in the middle of the month for pain in my right chest and difficulty breathing. I had an ultrasound of my heart and liver, CT of my chest and a bronchoscopy. After a week I was sent home.

Once again I was hospitalized a month later in February for pain and shortness of breath. An x-ray showed I had a pneumomediastinum (air bubble in my lungs). My blood-gas was extremely high and because it is hard for me to blow out my carbon dioxide when I breath I was having huge headaches. From my bronch in January I was told I was growing bacterium in my lungs. Even when the diseased lungs were removed from transplant the bacteria can hang around and grow in the new lungs. So, a course of three different antibiotics were started for a nine month to year long duration!

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 the lungs just aren’t the right ones for you and not to get too down.

Then, once again I got called. Call number 5 on March 29. After delays and an overnight stay, I received my double lung transplant on March 30, 2019!!! My surgery was at 4:15pm and finished 8 hours later at 2am. I am forever grateful to my donor and deep sympathy to the family who lost their loved one. Thank you.

After 17 days I went home. My first clinic visit was April 23, and each clinic will involve a Pulmonary Function test, bloodwork and x-ray. These tests and clinic visits will be weekly for the first 3 months and bi-weekly for 3-6 months. At 6 months to 2 years I will go monthly and after two years my check ups will be every 3 months. If I don’t know everyone already, I will after all of this!

 

Procedures, tests, complications and side effects

Here is a list from A-Z some of the problems/side effects I have encountered in my 11 year journey, along with tests and procedures I have done!

A
Acid Reflux
Acute Lymphoblastic Leukemia
Acute Radiation Sickness
Avascular Necrosis
Anesthesia
Apheresis line
Acupuncture
Acupressure
Audiology testing
AVN-knees, hips, elbows, fingers, lower back
Adnovirus
Abdominal Ultrasound
Allogenic Stem Cell Transplant
B
Bile Reflux
Baldness
Bone Marrow Transplantation
Bone Marrow Aspiration
Biopsy-skin, liver, lungs
Broviac/Hickman central venous line
Blood Transfusion
Bone Density Test
Bone Scan
Bronchoscopy
Blepharoplasty
Bladder Infection
Blood Clot
Blood Pressure Test
Blood Gas Tests
Botox Injection- Migraines
Bilirubin Test
Bortezomib
C
C-Difficile Colitis
Cancer
Cataracts
Chemo Brain- Post Chemotherapy Cognitive Impairment
Conjunctivitus
Constipation
Cushing Syndrome
Cytomegalovirus (CMV)
C-Difficile Colitis (C-Diff)
Colonoscopy
Chemotherapy
Chest X-Rays
Complete Blood Count (CBC)
Computerized Tomography (CT Scan)
Catheter
Cystitis
Cuvitru-Immune Globulin Subcutaneous Human
Cholecystectomy- gall bladder removal
Cholecystitis- gall bladder inflammation
Cortisone Injections
Cancer Treatments
Cataracts
Coronavirus-HKV1
C-Reactive Protein Test
Creatinine Test
D
Deep Vein Thrombosis
Diabetes
Duodenitis
Dexa Scan
Depression
Dry Eyes
E
ECG-Electrocardiogram
Endoscopy
EBV
F
Functional Neurological Disorder
Feeding Tube
Fungal Lung Infection
G
Gastroscopy
Gastritis
Gastric Emptying Study
Genetic Testing
Gallstones
Gastrparesis-GERD
H
HHV6
Hallucinations
Hypertension
HbA1c test
Hematocrit test
Hemoglobin test
HIDA Scan
Helicobacter pylori (H-pylori)
Hand-Foot-and-Mouth Disease
I
Interstitial Lung Disease
I-Vad Central Line
ICU
Ibunerol treatments
IVIG
Influenza A,B
Immunotherapy for Cancer
Ingrown Toenail Removal (‘chemo nails’)
J
K
L
Leukemia- Acute Lymphoblastic Leukemia
Lumbar Puncture
Liver Function Tests
Lung Transplant
M
MRI-Magnetis Resonance Imaging
Medi-Vac
Mouth Sores-Blisters
Mycrobacterium
Migraines
MRSA- Methicillin-resistant staphylococcus aureus infection
N
Neuropathy- hand and foot, peripheral
Nasal Wash
Nightmare Disorder
O
Orthodontics
P
Pancreatitis
Pneumonia
Pneumothorax- Collapsed lung
PSC-Primary Sclerosing Cholangitis of liver
Pancreatic pseudocyst
Platelets
Physical Therapy
Pulmonary Function Test
Pick Line
Pneumomediastinum
Psychiatry
Psychology
Pap test
Q
Qt Syndrome- prolonged
R
Radiation
Rotovirus
S
Shingles (Zoster)
Strept Throat
Salmonella Infection
Steroid Injections
Spirometer
T
Tachycardia
Thrush,Oral
Tinnitus
Typhilitus
TPN
T.B. Skin Test
T.E.N.S.
U
Ultrasound- heart, liver, lung, abdominal, pelivis…
V
VQ Lung Scan
VRE- Vancomycin-Resistant Enterococci
W
X
X-Ray
Y
Z

Feel free to leave a comment below!

Thank you,

Angie Rose Lee

 

8 thoughts on “My Journey

  1. Branon Leonard says:

    Hi Angie your brother posted this link on Twitter i just finished reading about your unimaginably tough fight with ALL and all it’s effected you! I just happened to stumble upon your fight because I was sesrching Leukemia on Twitter on behalf of my 4 y/o son Jaydyn who is also fighting Leukemia. There is no update for 2018 and I really hope that you get a call for a match on a lung donor. I will always be praying that your fight becomes a lot easier. You are incredibly strong just from reading your story I felt the emotions that you went through and cried for you no one should ever have cancer ever. I will continue to read on your blog. Your story found me in Arizona in the Navajo Reservation and I hope that all will be better for you soon God Bless and keep fighting the good fight!

  2. Chris says:

    Your family has become like my family. The fact that you thought of me enough to send a bracelet with your mother, meant absolutely everything to me. I hope for nothing but the best in the times to come for you. Thank you so much.

  3. mabel says:

    thank you for the bracelet, angie!:) it’s so pretty and pink is my fave! (howdya know?) ❤️
    i read thru your blog and i cannot imagine how hard it could have been for you to be fighting a huge battle at such a young age. all i can say is, you are one tough cookie!🍪 you are very blessed to have a family who has been very supportive. i especially admire your mom for being always at your side:)
    continue to be an inspiration to others, angie! you are definitely a fighter!
    hope to see you around!

  4. Peter says:

    Angie. Thankyou so much for the Bracelet. You are the strogest person I have ever know. Even if I come wake you up at 5 Am for a sample of blood.There is always a smile on your face no matter how much pain or discomfort you were in.. There was a smile . You are a true hero an inspiration for all the staff at the U and 5F4. From me and U of A Lab service God bless and big bear hugs. Take care kido.

  5. Gail says:

    You are the strongest person I know Angie. I am proud to be your Aunt. Your journey has been too long and so hard but I do hope that better days are on your horizon very soon. We love you very much.

    Auntie Gail, Uncle Herve, Nate and Noelle

  6. Steph says:

    Girl, you are one of the strongest women on this planet. Your story really helped me today. I deal with mental health and fight with my mind everyday to be happy. Your story of strength and words of encouragement have really inspired me to keep fighting. If you can force through depression and anxiety on top of all your other health concerns I know I can too. I really want to thank you for putting your story online to share with others because I needed a story of strength today. You inspire me to be happy. I hope you realize the positive impact you have on others. <3

  7. Sara Blake Lee says:

    Hi Angie,
    A little note to say “hello” and that myself & all of us are thinking of you a lot. Amelia & Keira asked about you when Erich & Maggie stayed with us, they would love to see you! Hopefully that will be soon! They had so much fun with your siblings! I just wanted to say that I very much liked reading your journey on this great web-site. You are very articulate in your story & I feel privileged to hear it. It is wonderful that people reading it can get an understanding of your journey. You are the bravest person I have ever known and have been through an unbelievable amount this past 8 years. I know other children and young adults will benefit greatly from learning of your journey. You seem to always put a smile on your face that lights up everyone who surrounds you. I have to say your bracelets are beautiful, I wear mine everyday! I’m sure you enjoy making them. If you are interested in making some more, I would love to order some from you:) I really hope you are feeling well and enjoying the summer with your family. It’s wonderful to hear that Erich & Maggie are spending a lot of time this summer with you. Enjoy those cute little white kittens too!
    Lots of Love,
    Sara & the girls
    XOXOXO

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