Allow me to introduce myself . .
I often get asked to share my story. I was very young when I was diagnosed with Neuroblastoma so I don't remember the treatments at all. It's not any different from any other cancer story of a child - if anything mine is a little easier than most - but if it gives someone hope or information, it's worth having it up here.
My name is Leanne, and I have been a survivor for over 37 years now. If you know what Neuroblastoma is, I'll share my story. If you don't know, I will start by explaining it as best I can.
This is a very long story, so feel free to jump around using the guide below.
What Is Neuroblastoma?
All that medical jargon ;)
I am copying this from the James Fund website
"Neuroblastoma is a type of cancer that begins in the embryonic cells which normally develop into parts of our nervous system. These cells are called neuroblasts. A tumor arising from these cells is called a neuroblastoma.
The cause of neuroblastoma is not known. We do know it is not hereditary, does not result from injury and is not infectious.
Neuroblastoma is responsible for 8-10% of all childhood cancers. Although it is only the 5th most common cancer in childhood, it is responsible for a disproportionate number of deaths due to cancer in children.
Neuroblastoma usually occurs in children under 5. It is the most common tumor in babies under 1 year of age. Although it is rare, neuroblastoma can occur in older children and adults. "
"About 40% of neuroblastomas develop in the adrenal gland which is just above the kidney. The rest begin in a chain of nerve tissue that runs on each side of the spine. Tumors will then develop in the neck, chest, pelvis or abdomen. "
For more information go to www.cancer.ca or the James Fund
Where My Story Begins . .
Let's go back lots of years. I was born in Peterborough, Ontario. I have 2 older brothers. My oldest brother was just recovering from kidney disease when I was born. (my poor parents) Keep in mind, this story has been told to me, as I really don't remember.
At about 10 1/2 months old, I always seemed to have a cold. More curious, when I was laid down, I would have a hard time breathing. When I was picked up, it got better. Several trips to the doctor for diagnosis of asthma later, my mom took me to the emergency room and demanded an x-ray. The chest x-ray found a large tumour - the size of a large mans fist - attached to my spinal cord right near my trachea. When I was put on my back the tumour would bump into my trachea and this caused the breathing problems. They told my parents the bad news: most children don't make it. The survival rate when I was diagnosed was somewhere around 5 - 10%. On top of that, if I made it, I'd likely be paralyzed. At that time, they hadn't started giving stages to neuroblastoma yet. I know it had spread to some of my surrounding lymph nodes though.
That day I was rushed to the Hospital for Sick Children. I had surgery immediately, and the majority of the tumour was removed. Due to the fact that it was wrapped around my spinal cord, they couldn't get it all. Time to move to the next step - cobalt radiation. Otherwise known as the cobalt bomb. Not a scary name at all! I had the maxium dose they could give me, but I don't know how many treatments that took. It left me with some spinal damage, scoliosis, and a long list of side effects, but it did the trick. It was a huge machine and no one was allowed in the room with me when I was receiving treatment. My mom used to say she remembered looking through the tiny little window at me strapped onto this giant machine and just waiting outside for it to be over.
I laughed one day recently when I was at a museum and the cobalt machine was there - now considered an ancient artifact in the treatment of cancer. It never ceases to amaze me how far cancer treatment has come in a relatively short time.
I was being treated at the Hospital for Sick Children in Toronto Ontario, but my radiation took place at Princess Margaret Hospital across the street. The picture at the top here was taken by a nurse at Princess Margaret during this time period. I am happy to say the radiation was a success, and I went into remission somewhere between my 1st and 2nd birthday. I've never been able to find the exact day in my charts. My dad says I was about 18 months old. Even better, although my spine was damaged, I had full use of my body.
A bit of a dedication to the best oncologist I could ask for . . .
I had an amazing oncologist at Sick Kids. Dr. Marilyn Sonley. I owe her, and the surgeon, my life. I went to visit her often at first, then less and less as the years went on. (every month, then every 3 months, then every 6 months, then every year) No matter what her day was like (and I can only imagine they weren't all fun days) she always had a smile and asked me questions about everything. Not about cancer, about what my life was like. Years later I got a copy of my file from Sick Kids and laughed at all the things she used to make notes on. Honestly - she even wrote that my house was blue. She always knew me though. I was never a number, never just another cancer patient, never anything but Leanne.
I remember once as a kid complaining about the HOURS we had spent waiting in the waiting room to see her and she replied with "Leanne, if you spent hours and hours waiting, it means 2 things - 1. You are healthy enough that you are not an emergency anymore and 2. Someone else far worse off than you needed me first." To this day I remind myself of that every time I sit in a waiting room for my turn at the hospital or doctor's office. Someone else is always far worse off than me and needs the doctor first, and I'm thankful I'm well enough to wait.
Dr. Sonley told me many other things as well. She told me my spine wasn't strait, and I had damaged discs and vertabrae. She showed me my x-rays and answered my questions. She explained all the extra blood tests I had to have because the blood transfusions I had to save my life may actually have been harmful. (they weren't!) She taught me about blood cell counts and what they were checking me for. She told me I'd never have children, but that was okay, I had lots of love and could adopt. She and my mom were very clear that I was healthy, I was lucky, and I darn well better make the most out of my life. I was no victim.
At one point in time when I was around 4 or 5 we had a bit of a scare. The curvature in my spine was getting worse, and Dr. Sonley felt I needed to see about getting a body brace. My mom put me in dance lessons hoping to help my spine. By the time I got to see the specialist about the body brace, my spine was already improving and I never needed the brace. I stayed in dance until I was finished growing and although my spine never got better, it didn't get any worse either.
Dr. Sonley retired when I was 15 years old, 2 years before I outgrew Sick Children's. I always wished I could find her again someday to say thank you.
**UPDATE** with the help of a friend and many persistent emails, we tracked down Dr. Sonley. She is enjoying retirement as she should. I was so grateful to have the opportunity to send her a (very lengthy) email thanking her for my life, and telling her what I have done with it so far. That was one of the happiest moments I have ever experienced. Much endless grattitude to Dr. M. Sonley who gave me the greatest gift - life.
Just one of the articles published about me when I went into remission. My parents say the people of Peterborough were wonderful . . .
In my adult life, I volunteer with the Canadian Cancer Society. What a treat to come back to this article and note that in the bottom right corner my parents made sure to recognize the impact the Canadian Cancer Society had. I am so blessed to be able to assist with such a great organization and the work they do, including providing transportation for so many others, just like me. As well, I have learned that the cobalt radiation device that was used to save my life was discovered through a research grant funded by the Canadian Cancer Society. So quite literally, I am here today because of the Canadian Cancer Society.
Although I always remember going to Sick Kids for check-ups and such, I'm not sure when I actually realized what cancer was, or that I had it. My mother is a very positive person, and taught me to be grateful for every day I had, not dwell on what had happened. Aside from the check-ups and a few odd things, I had a pretty normal childhood. My brothers beat me up and teased me ruthlessly, I ran and played like every other kid, and I spent many summers in Muskoka, Ontario camping and hiking and making full use of the legs I wasn't supposed to be able to use. While other kids were inside watching TV, I was out enjoying as many moments as I could. (okay, I watched TV too) I'm sure I gave my parents many heart attacks with my fun loving, adventurous ways.
As you can see now, I speak quite freely about my experience. That wasn't always the case though. I learned very young not to speak about my cancer. One of my earliest memories is me telling a friend that I had cancer when I was a baby, and her saying "liar - everyone who has cancer dies". Another told me I was a freak. From then on only my closest friends knew. I even went to great lengths to hide my scars so that I could avoid questions altogether. I wouldn't wear any clothes that showed any portion of my scars, and I didn't speak to anyone about cancer. I felt very alone in a lot of ways. Although I am more accepting of my scars now, I am still very self-concious of them and have never been comfortable having them show in public. *Adding this because I have been asked so many times: My main scar goes from above my right shoulder blade down my back beside the bone, under the shoulder blade, and all the way around my side into my right breast. I also have a significant 'stab wound' on the right side of my ribs where they had to puncture my lungs to drain the fluids. The main scar is quite thick, not at all like they are today.
Life drastically changed for me when one summer, after much negotiation, I talked my mom into letting me go to Camp Oochigeas. To this day it was still the best camp I've ever been to. It's a camp for children with cancer, yes, but it's upbeat, cheerful, loads of fun, and the best experience ever. I am still in contact with many friends I made there, and my only regret is not going sooner. From my friends there I learned that I was not the 'freak' I thought I was. To them I was just normal. My scars were normal. My deformed back was normal. I learned for the first time that it was okay to admit that I had cancer once. What a gift that was to learn. That knowledge led me from camp into a life where I speak openly about my experience, which was a drastic change. I know I would not be who I am or where I am in my life today if I hadn't gone to Camp Oochigeas. Later in life when times were challenging I would often look back on the people I knew from camp and draw courage and strength from them. I simply cannot imagine the path my life would be on if not for that one summer 20 years ago.
In all this time with cancer related things, I started to notice something odd. I had yet to meet another neuroblastoma survivor. Not one, ever, that I knew of.
Also, growing up, I was moved over to Princess Margaret Hospital, I got married, and I found out something interesting. Apparently, mostly due to where my tumour was, I WAS still able to have children. My doctor told me I just wouldn't be allowed to go into labour. I could live with that. So 2 planned c-sections later under full sedation, I have a very healthy daughter and son, who have no issues at all. (pictured at the top of this section) I also learned I had clips in my ribs - for some reason I never knew that before.
Along Comes Facebook
In 2006 a friend of mine invited me to this strange website called Facebook. It was very new at the time. I was wary at first, but played around and realized it was actually pretty fun. Then I discovered a feature that would forever change my life. Making groups.
The first group I made was "Neuroblastoma Survivors" and I put a plea up looking for other survivors, since in the almost 30 years of my life to that point, I had never met one. Not long after, I was first contacted by a woman who was the mom of a survivor. Very exciting. Even more surprising was when we spoke more and it turned out she lived not 40 minutes from me. Next person I found changed my life even more. Another adult survivor, named Jennifer. We spent many days chatting endlessly back and forth, and we discovered some pretty crazy similarities! It was like, for the first time in my life, someone understood totally. We not only had loads of things in common in our lives, we also both had Dr. Sonley as an oncologist at Sick Kids! We wondered what were the odds of that? (After we found Dr. Sonley - we actually found out they were pretty high since she was the only one of her kind at the time!) Jennifer remains one of my dearest friends, and much of our conversations go back and forth about life and "did they test you for this yet?" Until I found Jennifer I didn't realize just how alone I had been for so long. Every day I am so thankful she was searching through this weird site called facebook for other survivors as well. (Jennifer actually grew up knowing other nb survivors!)
Jennifer lives near Peterborough, my old hometown. We noted that in both of our immediate families there were occurrences of breast cancer and prostate cancer, and wondered if that was just co-incidence or not. My mom has since passed from breast cancer, but my dad is still a prostate cancer survivor. We have posed this question to the doctors and each time have been told it's more likely that this is because those are the 2 most common cancers.
The next part was amazing. Jennifer introduced me to the James Fund. They raise money for neuroblastoma research, and she informed me they were having a run that I should drive down for, and meet her at. My first ever meeting of another neuroblastoma survivor - I couldn't resist. Not only did I get to meet Jennifer that day, I also met many young survivors, and many families that had been touched by neuroblastoma. Some were families who had lost their children, but still wanted to fight the disease. What an honour to be involved. Someone snapped a picture for me of the day Jennifer and I met, along with another little survivor. I'm happy to report the little one in the middle has passed her 5 year mark and is doing great!
Since then I have attended the run several times and their annual NB retreat in Muskoka. While I still feel sort of "outsider" ish with them - being a survivor, not a parent of a survivor, I am so happy to be involved. As one parent once said to me "I really wish I didn't have to know you, but I am SO glad that I do." What a great way to word it. Can't wait for more of those young ones to grow up and become adult survivors like us, I'm hoping someday the survivors will outnumber the parents. :)
If you're on facebook, my little group is still going strong, and you can find us by searching "neuroblastoma survivors". On last check we were up to just over 2000 survivors from all around the world. Chokes me up a little each time I add another.
Ya Can't Let Cancer Ruin Your Day
This book is probably the best I've read. It is a collection of emails written by the father of James Birrell, a young boy who sadly lost his battle with neuroblastoma. Before James passed on, the James Fund was started, and the Birrell's continue their work helping important research continue to improve the fight. While the story has an untimely end, it is an uplifting story of hope, and how to make every moment count. A MUST READ!!
Weird Side Effects etc
This is a question I get asked a lot. Do I have side effects? Yup, some wild ones.
1. I cannot tolerate a lot of foods. I refer to them as allergies so people actually "get" that I can't eat those foods. Apparently it's some weird side effect of radiation. My body simply cannot digest most things. And when I say a lot, I mean A LOT. My husband jokingly says I am allergic to flavour.
2. I have a lot of lung damage. I was told I have only 43% of my lung capacity. Doesn't affect me in the slightest usually, but I do hyperventilate fairly easily sometimes. Swimming is especially hard for me with breathing. Also because of this I have a very hard time being around any kind of smoke. I do try to run in the mornings and this helps a lot, despite me having a hard time catching my breath. My doctors have said it is good exercise for my lungs.
3. My spine, obviously. Still has a curve in it, always will. I have scoliosis, so my spine has moved an inch or so to the right side, into the spot where the muscle used to be. It physically hurts to stand up strait, but dance seemed to do the trick and keep it in line for the most part. The discs and vertabraes that were damaged never grew, so I have to be very careful not to play anything rough that could do further damage. I was never able to take gym in school, and couldn't play sports that put strain on my spine. Dr. Sonley always used to tell me I'd be 5'7 if my spine was perfect. I use that line all the time since I never got past 5'3.
4. I have a slight degree of Horners Syndrome. My face changes colours when I'm playing sports. Right smack down the middle. One side goes bright red, sweaty and hot, one side goes sheet white and cold. (you can imagine the teasing I endured for that in school!) One of the little survivors I met (who had a tumour in the same spot) has the same thing happen to her, so it's nice to know I'm not alone in this. She saw me one day after I did a 5k run and said to me "My face does that too! You're just like me!" What a great moment. I'm so glad she will grow up knowing she is not alone in it either.
5. From the time I was about 11 until I was in my 20's I got really severe cluster headaches. Ever heard of migranes? Multiply that pain a few times. It often goes hand in hand with Horner's. The pain was so bad that if the pain shot at the hospital didn't work right away, I wasn't allowed to be left alone. When I lived on my own my mom drilled into my head that I HAD to stay at the hospital until the pain was gone. What I have now learned after some research is that people who suffer from cluster headaches often have to be put on suicide watch - the pain is so bad from them that people will literally self harm in order to stop it. I'm assuming that is why I always had to be watched, my mom just never told me the whole story.
6. I get cold WAY faster than normal people. I am missing a muscle in my back, and I'll get cold there first, which causes my whole back to seize up. Any kind of dampness combined with cold equals a very painful day for me. *Adding this on as well: Why am I missing a muscle? The old treatment with surgery was to remove as much tissue around the tumour as possible to try to stop it from spreading. On me this included the muscle between my spine and shoulder. Today they would pinpoint exactly where the tumour was and only remove it and a few lymph nodes to minimize the damage to the body. Another way treatment has come leaps and bounds!
7. My baby teeth didn't fall out naturally, and my adult teeth have no enamel and my teeth and gums are insanely sensitive. My dentist loves when I come to visit but I'm sure my insurance company doesn't love their bills. :)
8. I like to think I have a great attitude on life generally. I am upbeat, happy, and I love making full use of every day. I see this as a side effect - just a really good one. :)
9. I have some minor memory issues. They say it was the radiation again - not really sure. It doesn't really affect me that much, I just write everything down. It's mostly short term memory - I always tell people - if you don't see me writing it down, chances are I won't remember whatever it is. Instructions or lists are the worst. It can be frustrating sometimes but usually I work around it.
10. Muscles - my good side of my back makes up for what the bad side can't do, and so does my lower back. I have hypertrophy on my good side. Surprisingly I have the majority of back pain in my lower back, not in my surgery area. This was very pronounced after having children, and I spent many days in physio trying to regain strength. After my 2nd child there were many days when I couldn't even stand because of the pain. I find doing yoga helps. Because of the lack of muscles on the right side, I have a hard time playing any sport that involves swinging my right arm. Not that I don't try of course, but I usually pay the price for it. Over the years I have strained my rotator cuff more times than I can count, and gotten tendinitis. I have learned with age where my limits are, and unless I'm losing in a game, I usually back off a bit. :)
11. I have fairly terrible hand/eye coordination. Although my brothers say this is just my excuse for never beating them at video games. Over the years I have overcome most of it - probably just through experience - but compared to the average Joe my hand/eye is a bit lacking. I can't catch a ball to save my life. They tell me this is also because of radiation & myelopathy.
12. They also watch me for everything. For most of my life I have been told that it's not "if" I get cancer again, it's "when". So far so good though! I go to yearly check ups where they check thyroid, skin, and lymph nodes specificially. Because I am also considered high risk for breast cancer, I go for screening for that as well. Honestly, I have never gotten used to this thought, I used to let it consume me a lot more than it does now. My doctor used to say that I was here for a good time, not necessarily a long time. Although I think I have surpassed the expectations, and have also found nb survivors in their 50's, so that gives me hope! The week before I go for my yearly check up is very stressful for me. I figured that would improve with age, but it's actually gotten worse lately. Although I have learned to cope with it, I have a very hard time not worrying myself sick before I go for my check ups. Over time I finally decided that until it finds me again, I will spend every moment I can trying to find a way to defeat it.
13. I am anemic. No big deal on that one. Some people pump iron - I pop iron. Every day. And then I'm good to go. When I forget my pills I get very sleepy and have a harder time breathing, but still not that big of a deal.
14. I grew up immune compromised. Or at least slightly. While I like to think I rarely get sick, when I do, I get REALLY sick. I have had chicken pox at least 4 times as a child and had to be hospitalized. If I see a child with chicken pox I will avoid them like the plague because to me it equals a lot of pain! My mom was not the overly cautious type, but she did drill into me not to share food or drinks, ever. So while my immune system is fairly healthy these days, there isn't a person on earth I will give a sip of my drink to and then drink from it again. Conditioning, I suppose! Usually the thing I have to watch most for is strep and pneumonia, or any combination of the two.
None of these things are big deals to me. Even being "allergic" to everything never bothers me (although it bothers those I eat with it seems, especially when we are limited on restaurant choices, which actually bothers me more than the allergies do) since I know it could be worse. I consider myself to be pretty darn lucky! Not just for what I have been through and survived, but because I wouldn't have had the opportunity to meet all the wonderful people I have if not for the cancer. I certainly wouldn't wish it on anyone, nor would I have gone through it if I had the choice of course, but I also don't think I would be who I am today if not for what I went through.
And, I'm adding one more here, as a word of caution:
15. Survivor guilt. Only a survivor would know this one. It's never discussed, but it is always there. I am adding it at the risk of sounding ungrateful or selfish, but please understand that's not why. It's impossible to shake, and I really struggled with it a lot when I was a teenager. I never told anyone, not even my parents, about what I was feeling. It caused a lot of hardship when I was learning to deal with it. There are very few days that go by that I don't slip into the "why me" thoughts. Why was I saved when so many haven't been? This is especially true in times of loss of others who are fighting the battle. You can't imagine what it feels like to go to the funeral of a child you were close to, only to have their family look at you and question why you survived when their child didn't. I wish I had the answers. I wish that no one ever had to ask that question. So parents of survivors - please be aware and discuss it with your child when they are the right age. It's a lot of weight on shoulders that are not ready for it. I'm sure we don't all go through it, but I do know many that do.
That's All Folks!
Of course, my story doesn't end here. I am off and happily enjoying the rest of it!
I once read a shirt worn by a fellow childhood survivor that said "Not just surviving - THRIVING" and that is how I view my life. I am not merely passing through, I am trying to draw out every experience I possibly can and enjoy every moment I have been gifted with.
Thanks for reading. If you have any questions or comments, you may post them below, or come and find me on the Neuroblastoma Survivors page on facebook.
"I think over again my small adventures
My fears, those small ones that seemed so big
For all the vital things I had to get and reach
And yet there is only one great thing
The only thing
To live to see the great day that dawns
And the light that fills the world."
- unknown Inuit
Go ahead and ask me a question, I'll try to answer!