Allison Fuller
Allison
25 years old
Stage IV Neuroblastoma, in treatment
Port Coquitlam, British Columbia, CA
Our Story
I am slightly different than most on this website, I'm not a
parent of a child with Neuroblastoma. I am an adult with Neuroblastoma -
an adult who was first diagnosed as a 4 year old little girl. I am now 24
and being treated for Neuro.
I don't remember much of my childhood - but what I do remember is a lot of good
times. I believe I had the best nurses one girl could dream for - the
support and encouragement they gave all of us kids was amazing. As I
mentioned above, I was diagnosed when I was 4 years old, just a few months
before my 5th birthday. Treatments went on, I spent quite a bit of time
at BC Children's Hospital and then one day I was okay.
I remember being about 10, in grade 4 -- and I had a clean bone marrow
test. Things were good, I was healthy. Time went by, grade 4 turned
into Jr. High School, and I was still okay. I had yearly exams at
Children's. Then it was High School, and I was still fine, still doing
yearly exams, was on my into the adult world past High School and everything
was great.
I entered into College, took some general courses - worked a few jobs. I
was living the life I had always wanted to. Then I started to get very
bad chest pains, I saw my family doctor multiple times and nothing. The
pain came & went, but it started to stay around more then it was
gone. About three months later I had an appointment with my kidney
doctor, who pretty much packed me up in a wheelchair & had my Mum wheel me
across the street to the Emergency ward. Something was up. Within a
few days I had been re-diagnosed, Stage IV Neuroblastoma once again. It
was March 2003, I believe it had been 8.5 years of me being "cancer
free".
This was a very hard time on my family - it would be on any, I had a very hard
time understanding how it was even possible. So onwards we went, and to
honest the next few months are a complete blur. The first concern from my
oncologist was to manage the pain I was in. Then we went onto the cancer
-- I had chemo, lots and lots of chemo. From sometime in April or May
until December. By December I was doing much better, the amount of
disease had gotten a lot smaller and we were ready for something new to
treat.
In January 2004 I started doing the mibg i131 treatment -- however, this
treatment wasn't available in my hometown, well let alone my Province. I
had to travel to Edmonton, Alberta for the treatment. I did this
treatment on two month cycles. It was working, we noticed small
differences in tumor size, and to top it all off I was feeling really well, and
bored - I needed something more in my life. I was going to go back to
college! I talked with the doctor's in Edmonton & they were willing to extend my
cycles to four months, by doing this I was able to go to college without
missing large amounts of work. (As with the mibg i131 treatment, you are
pretty much in isolation for 7-10 days - so going to school would have been
very difficult).
So I did it, that August I had a treatment, came home, recovered from the
treatment and started school in September. My professors were great and
allowed me to take my final exams early so I could go to Edmonton for my treatments. I couldn't
believe how well things were going. I continued
this treatment and my college, and then I had graduated my program.
This was in May 2006 - I went out and got a job at one of the top five law
firms in my city and have been working there now for the last 18 months.
Unfortunately my story isn't as smooth as that - between graduation and now
things have gotten a little messy. Last September 2006 - I had a stumble
in the stability of treatment. It turned out that my right hip had become
filled with fluid which caused an unbelievable amount of pain, and very very
quickly did it do so. I went from sore hip, hard to get move around, to
can't get out of bed in three days. I ended up having hip surgery to
drain the fluid that mysteriously wound up in my hip. That was September,
in October we started the chemo again - the typical Topotecan &
Cyclophosphamide. We did this until April, when I started to get some
side-effects to the Cyclo. I did one more cycle with just the Topo, and
it didn't make any difference to the side-effect. So my oncologist
stopped treatments and we decided that it was time to re-evaluate my current
situation.
I felt totally fine, I had no pain - my blood counts were good. Things
were really great in my life - I was planning my wedding, I was working - I was
"normal". Then in July I pulled a muscle in my back, I could
hardly lift my arms. It took about two and a half weeks to clear up, but
then I was okay again. Then in August it happened again, but it was
worse. (At the time I was taking dance lessons, that is where the muscle
strain began). It was becoming very concerning - so my Mum and I really
started to get on my oncologist. It seemed so weird that a muscle strain
would keep coming back, and cause such a great amount of pain.
So a few CT's, MRI's, plain x-rays and blood tests later, nothing.
Everything was okay on paper -- but we noticed my body going the wrong
way. Ever since I was re-diagnosed I have had a problem with edema
(swelling, especially in my legs) and it was starting to get worse. We
were able to control the pain and get me into good enough shape. My wedding
came & went, and I was totally fine. It was the best day of my life,
and I am the luckiest girl in the world to have such a supportive
husband.
Things were okay - I went back to work after the wedding, and we were still not
sure what was going on. Then it happened, my left hip. Not again
was my exact though - last year my right hip goes, this year my left?? I
ended up having to take another LOA from work, since the day after Thanksgiving
(Canadian Thanksgiving, October 10th was my last day at work). I couldn't
walk, I couldn't lift - I couldn't work.
We knew something was wrong, we just couldn't find it. Finally, I got a
PET scan. And that was the answer to my problems, it showed the
tumors. My major target, the left hip, and a few other spots. Plan
of attack, radiation. However, because of my past treatments we could
only radiate the hip -- not the spine/back/neck area's as they have been
radiated already twice. So onwards we went with the radiation treatment,
I had four days of radiation. Then the next step was my oncologist
getting the okay for the chemo she wanted to give me. As Neuro is a
childhood cancer, the two drugs came advised by the Children's oncologist -- my
oncologist had to get the okay to give the drugs. We got the okay, and on
this coming Monday, November 19th I start my first round.
So I guess this is a pretty updated story ... well for now. I will try my
best to update & keep my story current -- since it's much different that so
many of the other stories on here.
Thank you for reading. Best wishes to all. And remember, children
are strong -- I've been doing this for over 19 years now.
And kids, kick some butt!!
Thank you
Thank you to everyone ... you have no idea how much your support means to each of us. Thank you so very much.