In 2003, at 12 years old, my family and I knew something was very wrong. At 7 years old I began having stomachaches and it just got worse from there. In 2003 I still weighed only 60 pounds but 5 years of visiting all kinds of doctors didn't get me anywhere. Then, finally, I became jaundiced and was ordered to get an ultrasound. Just a few days later, I was pulled out of 7th grade and began IV chemotherapy at CHOP for Stage IV neuroblastoma. It turns out that doctors had tested me for it before, but I was one of the very few cases who didn't have the usual marker that would have told them I had it. This was just the beginning of my journey as a very unusual cancer patient!

For the next two years, I was in and out of the hospital constantly. I had 5 rounds of IV chemo, surgeries that ranged from IV port placement to kidney stones to a 13-hour resection, almost constant nausea, and the loss of my waist-length hair…and then the loss of my newly-grown-in hair again and again and again. I had infections that would land me in the PICU, and then I would be thrust into more treatments as soon as I made it back to the oncology floor. I had a stem cell transplant that started off fine and then reacted badly in my body; I came so close to dying that my parents were told to bring my brothers and say their goodbyes. But somehow I pulled through all of that, and I started a new treatment that finally had a big impact on my cancer. I was one of the first people in the world to get this new radioactive treatment, and it literally made me radioactive for over a week. I was hoping this would give me some cool superpowers, but sadly, it did not. However, it did do something even better: it destroyed almost all of my cancer and made me well enough to stop treatment for a while and go back to high school, where I managed to graduate with my class and even attend college for a semester.

In 2009, at the age of 18, I did have to seriously begin treatment again after a scan showed some growth. Thankfully, though, medicine had advanced so much in just those few short years that I was able to take oral medications - usually through clinical trials - that often had much fewer/less harsh side effects than traditional IV chemo. I have been on so many different liquids and pills now that I can't even count them, but they give me hope because each one is easier and gives me another day.

It's now been over a decade since I was diagnosed, and in that time I've gone from a child with cancer to a teenager with cancer to a young adult with cancer. I'm 23 and have a unique perspective that allows me to know what it's like as an adolescent to deal with cancer, and also what it's like to be in charge of my own decisions now while I continue to live with cancer. I'm different from a lot of the other young people with cancer because I have had to learn to live a life that balances doctors’ appointments and side effects such as weakness, hearing loss, and vision loss, with that of a normal girl who has friends and family and dreams - and I've had to do that for over 10 years. It's rare to get a childhood cancer, but it's even rarer to continue living with one for so long. But I'm grateful for it, because it means that I'm still here when I could very easily not be.

Over a year ago, after I tried traditional radiation that helped for a bit and then did not, and then stopped taking a clinical trial chemo pill that had also stopped working for me, I was told there were no more treatment options available. After so long, I had literally exhausted the supply; there were no medicines that could potentially help me that I had not already tried. I still have a tumor in my abdomen and small spots of cancer in my back and chest, but thankfully, they have seemed to be very slow-growing. Right now all I can do is hope that they continue to be so, and that another new medication will come out for me to try. Until then, I will continue to do everything I can to enjoy life and help others so that they do not have to go through what I have gone through.

Written by Hope Bertelsen
April 2014

Update: Sadly, Hope passed away on June 15, 2014.  She was an amazing person who truly lived up to her name.  We will never forget her.