Surviving and Going forward


(EJM) #1

Hi! I’m Emily. I was diagnosed and cured of stage 2B neuroblastoma when I was 6 years old in 2004. I’m currently finishing up my first year of college and have never met anyone with the cancer I had. I know most people on this forum are here for their children and I really wish everyone and their children strength through treatment. I didn’t really ever know what was going on when I was little, but I remember everything: every needle, numbing in preparation for needles, MRI, sonogram, hospital room, everything. However, I was given very little information about what was happening to my body, which was understandable. My parents just told me I had a blob in my tummy the size of a football. I recently learned it had actually spread to my lymph nodes, but they still get too upset to say much else. Anyway, after 10 years of coming back to the hospital for urine samples, blood tests, and sonograms, I was told there was such a small chance the cancer would come back, that I didn’t have to come in anymore.
Today I go to Wellesley College and I’m a Computer Science major. After my cancer, I fell in love with sports, math, theater, and eventually coding; I have been very involved with Girls Who Code as a Club facilitator in High School and a TA for the Summer Immersion Program.
If any other survivors are on here, I’d love to talk.


(Zainab Haji) #3

Hi Emily, I am the parent of a 6 year old boy who was diagnosed with neuroblastoma at the age of 4. Your story is so amazing and gives me hope for my son. I can’t contribute as a survivor but just wanted to say a few things.

Firstly as the mum and primary caregiver of an nb child, everything about other nb patients past or present affects me like it’s my own child, so I would like to say you should be very proud of your achievements, as I certainly am.

My son is in his final phase of treatment. Starts cycle 3 of immunotherapy on Monday, and we hope to finish treatment by the end of August.

I hope you find a survivor on this group. If not, there is a Facebook page for Neuroblastoma it’s called “Neuroblastoma support group. You are not alone ask away.” There are a few survivors on there.

Something that stood out for me in your message is about what you know and don’t about your treatment. And I’m so glad you mentioned it. Because I’ve gone against the odds and against the advice of family and friends and explained every minute detail to my son. They kept telling me not to tell him much but how else was he to understand why he’s in hospital and having treatment. He knows every single medicine he has to take and understands what he is going through. To be honest Ammaar makes it very easy for us to talk to him. He is an amazing boy and very mature for his age. And from your message it appears you are an amazing young lady and your perseverance and determination must have helped you beat this horrible disease.

Wishing you all the best for the future Emily. The sky’s the limit, be an eagle and soar above the clouds. You can do it. Xx


(Sam Saffron) #4

Hi Emily,

I love hearing how well you are doing, this really fills me with lots of hope as I am sure it does lots of other parents, stories like yours pretty much make our days so much brighter.

I believe @Laurelee_Bixenman_Gr Son Chase is also a survivor so perhaps he would like to say hello.

Keep up the coding, wishing you lots of good luck, if you feel like hacking on Discourse (the platform running this forum) ping me, we regularly participate in both outreachy and rails girls.

Sam


(Monica O ) #6

Hi Emily, I’m 24.

I was diagnosed with neuroblastoma shortly after I was born. The cancer escalated to stage 4 when I was too young to remember. I had some radiation treatment and got an adrenal gland removed. My memory of the treatment mainly consists of follow-up care for the following decade. The seriousness of the situation did not occur to me until I was about 12 or 13. I am still not completely informed on the specifics.

My mom got me involved in Relay for Life early on and it later became source of volunteer hours when I was the president of a community service club in high school. I led a team (for the club, not under my name), but quite frankly the experience felt uncomfortably self indulgent because I do not have much recall for the scary parts of having cancer (other than the occasional relapse scare as a teen). Athletics were never much of an issue for me, aside from a vividly painful incident where a gymnastics instructor made me flip over a metal bar when I was very young. I participated consistently in aquatic sports from kindergarten to my senior year of high school.

I’m currently a recreational painting instructor. I am about to start grad school so I can teach painting in a more academic environment.

I am curious to hear how you coped with and interpreted your experience as a kid, and, if you are willing to share, any residual side effects to your health or day to day life.