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Susan-Hayley's Story
Hi, my name is Susan-Hayley, and I was just diagnosed with papillary thyroid cancer
on March 7, 2008, 2 weeks before my 17th birthday. It all started out in 10th grade, during driving school when I found
out my instructor had suggested to my parents that for my safety on the road I should be screened for ADHD. It took a while
to get screened for ADHD, and once it had been confirmed that I did have ADHD in November, I was referred to a pediatrician
for a physical at the Cleveland Clinic.
The first thing doctors check in children (or adults) with ADHD is the thyroid
and the heart. During the examination, the pediatrician felt the glands in my neck, and noticed my thyroid gland felt
"enlarged" and also thought she felt a swollen lymph node. I blurted out that I had a stiff neck for a while and the
doctor wrote this down. Even though my blood test to check my thyroid hormone levels came back
normal, it delayed the process
of getting my ADHD medicine again.
Next I was referred to an endocrinologist for an ultrasound on my neck, which revealed
two thyroid nodules. Soon after the ultrasound, I had an appointment with an endocrinologist who told me and my parents
that there is a chance I might have thyroid cancer. The doctor and a surgeon came in to talk to my family, and said
at
least there seems to be "two" nodules on my thyroid, which are more likely to be benign than a solitary nodule, but
to take into consideration that while it could be nothing harmless, thyroid nodules in children are very rare and that there
is a 30% higher chance that nodules in children are cancerous than in adults. My parents did
not consider for one
second the possibility of my nodule being benign so I was soon to be scheduled for a BIOPSY...skipping the painful fine needle
test, due to it's chance of inaccuracy. It was very overwhelming for me to go through a long process to get ADHD medication
for driving, and then find myself sitting up on an examining table as the doctor explains to me and my family that I could
have cancer.
My cousin had papillary thyroid cancer a few years ago in her forties but I had
never heard of this before, and it was such a shock to hear the word "cancer" at my own doctor's appointment. Finally
on March 7, 2008 I arrived at Cleveland Clinic for surgery. It was all off to a rough start for me, especially since
I was unable to take a "routine" pregnancy test since I was not allowed to drink anything that morning, and they opted to
give me fluids through an IV. Before I could look away from the IV they were putting in, I fainted. The heart monitor
"cuff" they placed on my finger when I fainted was beginning to cut off my circulation and I could have lost my finger!! I
still couldn't take the "test", so the very annoyed nursing staff had to do a blood test, and I cried when they told me I
had basically slowed down the surgery schedule for everyone else by two hours. Soon I was wheeled off into surgery,with
my dad at my side, and was strapped onto a green table. The surgeon was listening to the
song "Stronger" by Kanye West,
"That that don't kill me can only make me stronger". That is my new song.
My surgery was scheduled as a routine lobectomy that should have taken 2 hours with
an initial frozen section biopsy, but after 2 hours through an electronic communication devise my parents were given, they
were given the message "Surgery is still going well and progressing". I woke up dazed and in pain and while my eyes
were closed I heard my dad whisper to my mom about Papillary thyroid cancer. Neither of my parents made their phone
calls in the recovery room and I suspect they did not want to freak me out when I first woke up.
The doctor came to my room with a bunch of interns and told me I will be ok, even
though they found out it was cancer. He also promised me that I will be able to finish my junior year, and probably
would be able to hold off on the radiation treatment until May or June. I had made it through the roughest part of the
ordeal. Of course I was placed in the infant rehabilitation/heart department due to the lack of space in the hospital
at the time, so it was absolutely hell for me to try to recover and get some SLEEP with babies crying all through the night.
I remember a boy behind the curtain shouting "Can you shut that baby up now!!" Also, the parent lounges were filled
and my two loving, and dedicated parents BOTH slept on the tiny love seat in my room, later with the addition of a chair,
never once leaving my side. Thankfully, I was discharged from the hospital the next day and I was surprised to see we
had gotten 2 feet of snow over the 2 1/2 days I had been in the hospital. Even the CVS was closing so luckily I got
my medicine and made it to the drive-thru Starbucks before they closed, assuring my parents that the "old" Susan is back.
I had missed about a week of school due to my surgery and recovery and the teachers
did not let me forget that I had tons of make-up work to complete. A week later, we were asked to come back to the endocrinologist
who spoke to us once again with the surgeon that my pathology report was back, revealing that my thyroid cancer had spread
to 3 of 4 lymph nodes they removed, and I needed treatment sooner than I was expecting. And I was given Cytomel. Again,
I felt the shock of my diagnosis, especially since I had complained of a "stiff neck" for months without a real explanation,
my dad often diagnoses strep infections, and only check the lymph nodes on the sides of my neck.
The next step for me was to have the nuclear medicine department give my mom a call
to schedule and we got a call saying they made an appointment for me to be "scanned", which we all knew deep down was too
soon. We were right about it being to soon, but a doctor in that department met with us and told my mom and I that I
should have started a low-iodine diet so maximize the results of my treatment. I have just gone off the Cytomel and
have begun dealing
with the diet, especially since I mostly eat sushi and grilled cheese sandwiches and I never was a "meat-eater".
I am very exhausted and I come to school around 11:00, instead of 7:30 when school
starts. Again my teachers continued to "bombard" me with make-up work,
despite my mom's meeting with the guidance counselor who assured me I would be excused from the fourth quarter of the grading
period, and I would not receive any "incomplete" grades. My teachers were still pressuring me to complete work until
I finally had my doctor write a note to my teachers that it was impossible and not compassionate to pressure me to make up
all the work from the time of my surgery until my [upcoming] radiation treatment, and it definitely reduced the anxiety I
had to meet everyone's demands to complete my missed assignments.
I will receive my RAI treatment on April 23, 2008 and I have already made a few sacrifices. Due
to my exhaustion from being off thyroid medicine I was unable to take the ACT test I yesterday, that was scheduled before
this ordeal had began, and the choir concert I had looked forward to being in is not a possibility for me since it is the
day after my treatment. I also may not be able to attend Prom this year, but nothing I have had to sacrifice is as important
as knowing we found my thyroid cancer before it was too late.
While not many others can consider ADD to be a blessing, I'm thankful my driving
instructor had even brought that to my parent's attention which led me into the right doctor's office where my "enlarged"
thyroid was discovered. I also would like to add that there were many pictures taken of me over the past year where
a little "lump" in the front of my neck seemed to get bigger and bigger in the more recent pictures. It was all
right in front of me, I had missed the obvious sign of something unusual compared to friends in the pictures that did not
have a huge lump in their necks, and now I even notice in a video my friends and I made on my camera the bulge in my neck
as I was talking, but until now I disregarded the strange lump, since I didn't know what to look for. My dad is a skin
doctor and always tells his patients to take pictures of their moles to compare month to month to
help find melanomas early. I truly feel that it is a big lesson for everyone to be more aware of your neck and the rest of
your body, and comparing pictures of you from month to month could bring a tumor to your attention.
I wish everyone the best
and I am thankful for the chance to share my story.
Susan-Hayley, April 16, 2008
Kaila's
Story
No one ever wants to hear
these four words “You might have cancer.“ I heard these exact words when I was only 10.
These are the Thyroid Cancer
Survivors. They heard these exact words and it ended up they did have cancer. That is one reason I look up to these three
people I also look up to these three people all the time because I know what the tests are like and I was lucky I didn’t
have it and I know how hard it is to manage it on top of your regular life and it is really hard.
It all started out when
I was nine. My mom would always take me to the doctors between the ages of 9 and 10 because I was gaining weight
for no reason; I was not growing, always cold, and always tired. Finally, when I was 10 they decided to do some blood
work and all they said was, “Everything is going to be okay. I bet she is going to hit a big growth spurt anyway.”
As we go down the
road that seems to last for ever. I felt like we were going halfway around
the country although we were only going a short distance. As I get there and go down the hallway that seems to never
end I shake as if I was walking through a freezer. As I walk into the small room, I sit down in the chair that looks
like a school desk.
The nurse gets the needle
out and slowly gets everything ready. Five ….Four…. Three …. Two … one… . She stuck the
needle into my arm it feels as if she is jabbing bees into my arm.
A few days later, we received
a phone call it was the doctor. It was the doctor; she had said I have hypothyroidism.
I was so confused I did
not even know what a thyroid is. I soon found
out that a thyroid gland
is a large ductless gland in the front of the
neck that secretes hormones
regulating growth and development through the rate of metabolism. It weighs less than one ounce has the only cells that
can absorb iodine and then turns the iodine found in most foods into hormones, and if you did not have one you would have
major weight problems.
This is what a thyroid
looks like. The trachea is your windpipe and the larynx is your voice box.
This makes thyroid surgeries very dangerous. One wrong move and you could
loose your voice forever.
I learned all this
from my doctor, Dr. Crimmons. She scheduled many tests and I went to all
of them I hated how I missed so much school, but I knew they had to be done and
that GOD was watching over me. Dr. Crimmons had soon scheduled an ultrasound; during this, ultrasound they had found
a nodule that they thought might be cancerous especially because of the numerous amounts of teens in Trenton with Thyroid
Cancer. Now knowing this the doctors had scheduled an ultrasound guided needle biopsy. They had scheduled this
for June 5, 2007, which I had soon found out, was Field Day at school. I was upset at first but then I realized there are
some kids who have to stay at the hospital so much that they do not get to go to school. I recovered well and was ready
to hear the best but the doctor had called and said that it was not clear enough to see if it was cancer so they scheduled
another surgery for July 25, 2007. I woke up that morning and packed my bag because I knew I would have to spend at least
one night in the hospital.
A couple weeks later, we
found out that I did not have cancer. We were all so excited.
I now am 11 years
old and better than ever. I am now in the sixth grade at Edgewood Middle School
and wake up proud not to have cancer and trying to help the ones that do.
I always dreamed to help
with a cause, my dream came true, and my new dream is to find a cure for cancer so tell a friend and get involved to make
a difference.
Kaila H.
November 2007
Sarah's Story
Back when we still had winter break, my family and my mom's friend went down to the beach in late February. While we were
there, I caught a virus and kept a steady temperature of about one hundred degrees. Since I wasn't feeling too badly, I went
ahead and did all of the beach activities like shopping and hunting for seashells.
When we got home, I realized that there was this weird knot that had developed in my neck. My mom took me to the pediatrician,
and he told us that it was just an inflamed lymph node and that it was more than likely caused by a dental cleaning. I also
remember him telling us that it could take up to a year to go down. He treated me with six rounds of antibiotics that didn't
phase it at all. Finally, my mom took me to our family doctor. He then proceeded to treat me with eight more rounds of various
antibiotics. This took a little less than a year. During that time they found that I had formed asthma and I also had numerous
ear infections. After the family doctor gave up, he sent me to an ear specialist because he figured that all this was due
to a major ear infection.
After seeing the ear specialist, he determined that I would have to have surgery because my eardrums were “shrink
wrapped” around the bone in my ear and because there was a weird growth in my right ear. He had tried to pull the growth
out of my ear in the office, but it was extremely painful for me so he decided to wait.
So around January 16th, I lay in the hospital bed at Baptist Memorial Hospital. As I lay there, talking to my parents,
a nurse comes in. “It is time to put an IV in you.” is what she said to me. So, she pokes my arms to find the
best place. Prick! “Very good! That's all there is to it!” she cheerfully exclaimed, as if it didn't hurt a bit,
when in fact it did. I don't really remember much after that. I remember something about giving me some sort of medicine through
my newly implanted IV. The next thing I know I'm waking up in a strange smelling room. “Move your right index finger.”
So I do. “Good! Welcome back to the real world missy!” I felt this deep pain in my right ear and a pain in my
left ear that wasn't so deep. That surgery consisted of removing a growth from my right ear that he found was enormous while
in there and inserting a tube into my left ear.
While in that surgery, they also conducted a biopsy of the infected lymph gland in my neck. Some time when I was in
surgery, they got the results of the biopsy. Cancerous cells from my thyroid had infected that lymph gland.
I remember finding out the day I got home from the hospital that I had cancer. My parents walked into the room and I heard
what they said at first, but then when they finally broke it to me, I went numb. Their mouths kept moving, but I couldn't
hear them anymore. I could make out that they kept saying that it was the “Good Cancer”, but I refused to believe
it. Cancer and die were used in the same sentence, but never cancer and good. I would later find out why they said that it
was good cancer. As far as I could see it, Cancer meant only two things, more surgery and, in this case, taking a pill for
the rest of my life.
So on February twenty-third of that year, I was back in the hospital. Another stick, another IV, another blurry time. After
I had gotten my consciousness back, I learned that I had been in surgery for a little over six hours, when it was originally
supposed to take three hours. The growth on my thyroid had engulfed my muscle that is in that area and my right vocal chord
nerve as well. They did save my muscle, but they ended up having to sacrifice my vocal nerve, resulting in half of my voice
box being paralyzed. They also had to sacrifice two of my Parathyroids, which regulate the calcium intake of your body.
I had the surgery done on a Thursday and I had to stay in the hospital until Saturday because of my calcium levels. The level
of calcium is supposed to be around a level ten, and mine bottomed out to a three while I was there and that is why I had
to stay the extra days.
I can't remember much about those few days. I do remember waking up one morning at about 1:30am and watching Kim Possible.
I also remember the nurse coming in one day with a fart machine trying to make me smile. The thing that sticks out in my mind
most is one day, my mom fell asleep on the only ear she could hear out of and I couldn't talk very loudly, so she couldn't
hear me talking. I had to go to the bathroom really badly so I threw my teddy bear at her to get her attention. We still laugh
about that. The rest is pretty much a blur.
Everything was good and well until it came to my radiation. I had to go for a pre-radiation visit. Dr. Clark, the radiologist,
then told me that I had to go on a no-iodine diet for a few weeks before I could have a scan done of my body to starve the
thyroid cells of iodine so that when they gave me an iodine-coated pill it would automatically go to that place. The scan
was to determine the level of radiation that they would have to give me. I couldn't eat much of anything. I went in on a Tuesday
and they gave me a low-dosage of radiation and sent me home again. I went back on Wednesday and they took the full body scan
and gave me the pill. After I took it, I couldn't be around anyone for a week. I had to stay in my room, and I didn't have
much to do. I was so lonely and I missed all of my friends terribly. I couldn't even be around my parents. The pill also made
everything taste funny, kind of like metal, for the next three months.
Almost six months later, what I thought was a lymph node appeared on my neck. As I entered into the thyroid specialist
office, I saw all of the usual nurses, which had now become very familiar to me with being there so much. When the doctor
finally came in, it took him a little while to determine that he thought it was a salivary gland, but he wanted a fine-needle
aspiration done to make sure. He didn't want to numb it because the Novocain would sting going in more than just doing it.
So as he prepared, I tried to remember to breathe. He stuck it into the skin, felt around, and then stuck it into the salivary
gland. It hurt horribly when he pulled the cells out of it. I had to wait two to three business days for the results to get
back.
Meanwhile, my dad had found out about a new type of medicine called Thyrogen. This medicine would let me not ever have
to go on the diet again. I would go in four consecutive days and get shots each day, then on the fifth day I would have the
actual scan, verses going off of my thyroid hormone for a month, and on the no iodine diet for two weeks. My dad called Dr.
Clark and asked her about what she thought about trying the thyrogen path instead of the other way to prepare for the fast-approaching
follow-up scan. Both doctors were to call back on the same day. That Friday, half of my prayers came true when the thyroid
doctor called back and said that it was just an inflamed salivary gland and there were no cancerous cells in it. Then my dad
received an email from the radiologist stating that I couldn't have the thyrogen because it hadn't been approved yet in children
under eighteen. It hurt so badly to hear that. I moved on though.
The next day, I stopped taking my thyroid hormone to prepare for my scan. I became hypothyroid very fast and it wasn't
fun at all. I got sick often and I didn't feel well at all. To top it off, two weeks after that I had to go back onto the
low-iodine diet. I was on that for a total of three weeks. During the scan, I was so nervous. I didn't want to have the radiation
again. When we got the results back, I was so happy. They showed only a teeny tiny spot. The doctor didn't want to treat it
until the results from the thyroglobulin test came back. They came back the following Monday and they weren't low enough.
That meant one more week of solitude. The radiation made me sick and then I couldn't taste anything for a very long time.
I am still gradually gaining my taste back everyday. I hope to one day be back to normal. This round of radiation also gave
me a horrible case of dry mouth. It isn't fun, but I'll live through it.
Although all of this has happened to me in just one year, I still am looking forward with hope. I know that God is planning
to use this somehow, someway. I trust him fully for that. I know that no matter what happens to me, God still loves me. How
could I be sorrowful when God loves me? God may not even show me what his reason for this is until I get to heaven, but I
don't care. God has his reasons, whether they are small or big. He knows what he is doing.
Sarah L., 12, NC
April 7, 2007
Read more about Sarah
Congratulations Dominique!
October 14, 2006
We were living in Beavercreek when she first noticed the lump and over the next few years she had been
seen not only by urgent care doctors but was in the hospital twice and had a physical. Each time they would say...
"swollen", "keep an eye on it"," the odds of it being anything serious are too small to worry about", "people
your age don't get this kind of cancer", or "even swollen glands". She fainted at work and had complications with
her heart beat, she went from urgent care to the ER and the next day everything changed. But even after removing
the tumor the doctor still said "the odds of it being cancer in someone this age is really small, not to worry..." well
it was cancer and then there was the second surgery, radiation and then... after a short month to catch our breath
she got married.
They had been in love since middle school, all through high school and took college classes together
and now through cancer together. Now we are working on the happily ever after stuff. We want to help others
know that people do get this kind of cancer, that lumps know no age.
Fara S.
Dominique's Mom
Jan. 2007
Hayley's Story
Hi everyone! First of all I want to thank all of you for your thoughts,
encouragement and prayers. Speaking of prayers, I am humbly about to tell you what happened during surgery on Friday. Just
as a recap, last Friday (7/7), we were informed that Hayley had pap. thyroid cancer found by doing a biopsy of the mass. Okay,
now during surgery, the surgeon removed the left lobe first, froze the mass, then sent it to pathology for testing. He wanted
to be sure that there wasn't other forms present and just wanted to have a perfectly clear picture of what they were dealing
with before proceeding. I was called after her lobe was removed and was told that they would call again in about 20 min. to
let me know how they would proceed. They had suspected lymph node involvement prior to surgery and I wanted to know what they
were doing step by step. Well, 30 min. later, the surgeon appeared in the waiting room. He sat down with my entire family
and told us that the results from pathology were back and that they did not detect cancer! Needless to say, we were dumbfounded
and almost nearly as shocked as we were last Friday when they told us that they detected cancer. I was overjoyed, yet couldn't
understand why I was told that to begin with. He explained that the pathologist who did the biopsy must have been sure that
the cells that she saw were papillary carcinoma cells; however, the test does have a fallacy rate of around 10%. I was never
so glad to be in that 10% in my entire life! They continued to look at the lobe and mass after surgery and reported to me
around 8PM that they still did not find any sign of cancer. They are sending it away to a lab in California to be sure. I
will hear the results Tuesday or Wednesday. Hayley came home this afternoon and is doing well. In the recovery room she asked
one of the nurses what all they had to remove and she really didn't believe them when they told her only half of her thyroid!
When she heard the news she just sobbed, even though she was still quite sedated at the time. In a way I feel guilty reporting
this news to all of you. For a week we had just a small glimpse as to what you all go through each and every day. I cannot
express how courageous I think you and your children must be. I know we just scratched the tip of the iceburg with our experience.
I want to tell you all that this experience has made a huge impact in the lives of my entire family. My daughter has already
posted information on her MySpace page about "checking your neck" and how important it is to report any change in your body.
She knows how fortunate she is, and so do we. Again, I have such mixed feelings reporting this news to you. I do admit that
I am so very grateful for my daughter's sake. Be it a pathologist's error or a gift from God, I am grateful from the
bottom of my heart.
Thank you all so much!
Candi S.
mother of Hayley age 14
July 15, 2006
Well, I am afraid that we will be joining the ranks once again. We received
the final path report today, and Hayley does have papillary thyroid cancer. We are devastated. I'm working hard to pick
myself up by the bootstraps and prepare to move forward once again. She will have another surgery either Friday or early next
week. I will know for sure tomorrow when the scheduler gets a hold of me. They will remove her right half this time. This
news only 3 days post-op from her left lobectomy...aghhh! I just wanted to let everyone know the news.
Candi S. July 18, 2006
I just wanted to share a bit of exciting news with everyone who will understand
why I'm so excited. Just 2 1/2 weeks post-op, Hayley made the JV volleyball team for her high school! Just three days after
being released for physical activity from her surgeon she was running and working out just like nothing ever happened. Now,
she does need a nap in the afternoon most days, but she is doing super. We are just so very proud of her strength and determination.
Candi S. August 10, 2006
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| October 2006 |
"The Day That Changed My Life"
“I’m
sorry to say but that mass was multi-focal papillary thyroid carcinoma follicular variant, thyroid cancer.” As he said this it seemed as though the world slowed down, everything was spinning. He said it so casually as if knew before looking at the papers.
The only word
I understood from his whole sentence was “carcinoma”; I knew that meant cancer.
As I was sitting in the chair, I felt my face get hot, and my back got hot, and I couldn’t breathe. My hands were shaking and everything went blurry. I felt like
I was gasping for air. I thought I was going to faint right then and there. What are you supposed to do when someone tells you news like this? All I knew for sure was that my life would never be the same ever again.
The doctor
put the chair back so I could lie down and the nurse brought me a Sprite. As
I lay there crying with my mom, all I could think was “am I going to be able to make it”. My mom laid her head on my stomach and said “Be brave, you have to do this.” I could hear her saying “You can do this, you can do this,” but I didn’t know whether
to believe her or not. I was scared for my life.
Why me?
Why now?
What did I
do to deserve this?
There had
to be a mistake he must have had the wrong papers, I couldn’t have cancer. I
was only thirteen.
The ride home
was the longest ride of my life, and the worst. I sat in the passenger seat of
my Mom’s car crying for forty-five minutes, from Children’s Hospital all the way home. By the time we got home I couldn’t cry anymore, my eyes were dry.
Instead I lay down on the couch and slept. I didn’t talk to anyone
for the rest of the day and I didn’t even eat dinner. I was in so much
shock I had no idea what to do.
The next day
at school I was afraid to tell Morgan, I wasn’t sure how she would react. When
I told her we were both speechless. Questions after questions were running through
my head all day long. I couldn’t concentrate on my work; I couldn’t even listen to what any of what my teachers
were talking about. It was a terrible day.
I
have learned to live everyday like it’s your last because you never know when something life changing will happen. I have also learned not to sweat the small stuff just deal with it, you may think
you have it bad but there is always someone who has it worse. I have learned
to speak up when something is unclear. I have learned to be an advocate for cancer
issues. I have learned to embrace the negative challenges and make them positive
life lessons.
By Lauren T.
Age 14
January 18, 2006
Nathan's Story
Good and Cancer sharing the same sentence?
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