Amber’s story… or should we say nightmare
It all started on February 10, 2005. Amber needed a physical for her new job and went to the local Urgent Care
Center to have it done. The doctor noticed a "knot" in her neck and told her to have it checked in 3 months with her
family doctor. Amber came home and handed me the paperwork that read "nodule in thyroid area, advised follow-up in 3
months with family doctor." Well, that just didn't set well with me so I called Dr. Steiner, an Endocrinologist and
made an appointment. That's where it all begins.
On
February 28, 2005 we went to meet with Dr. Steiner. That is where my worst fears were heightened. As he felt her neck
he looked at me and said “good call mom, I believe we have something here.”
I myself had developed a goiter when I was younger and was put on Synthroid and that was it. Now he said that she "has" something and I was on edge. He
said that he wanted me to take Amber to the hospital and have an ultrasound done. I thought okay this is odd, and off
we went.
At the hospital we were directed to the ultrasound area. There we met Alicia,
she led us to the dark room a place where Amber had never been. She was scared, but Alicia calmed her down. I was allowed to stay in the room while the procedure was performed.
I knew right away what I saw wasn’t good. I could see the "mass" and I
was terrified. I’ll never forget seeing the outline, the hot and cold areas, and watching her take measurements
of something that looked like a huge rock. She stepped into another room leaving
us alone and I didn’t know what to say to Amber. She seemed okay, but I guess she could tell by the look on my
face that I didn’t like what I saw. She said "Oh mom, come on, you are
worried about nothing. I’m starved can we go to McDonalds after this?" Alicia
returned to the room and handed me this massive envelope and told me to take this to the doctor with us on our next visit.
Off to the doctor we go, films in hand and my heart racing. Nothing but pure
dread in my stomach. Amber acted as though whoopee I’m going to the doctor
again. We sat in the waiting room, me trying to make light of things. Amber
was grumbling about just being there and then they called her name. My heart
dropped to my feet, my gut told me this isn’t going to be good, but I still had to hear the words from his mouth.
It seemed like an eternity sitting in the small room waiting for him to come
in. Then it happened. The door opened, the look on his face was enough
for me. I knew something wasn’t right. He took out this little card
and started measuring the “knot” on Amber’s neck. I sat in stone cold silence and I don’t
think that Amber said anything at all. He sat down on his chair and said, “Well, I believe that Amber has some
Thyroid cancer going on, but to be sure I want to do a needle biopsy. I would like her to be at the hosital on March
8th at 7.00 a.m. I’ll be doing the procedure myself, and if this is what I firmly believe it to be, we are
going to have to get her into surgery as soon as we can.” Amber freaked
out “I’m not having surgery, you're not cutting on my neck, I won’t do it!” She started crying.
I was numb. I didn’t know what to say. I sat there like a bump on a log, all these things running through
my mind. I hadn’t even told her grandparents what was I going to do. How was she going to react?
What if I lost my little girl? The room was spinning. Then the doctor told
us that he needed to get some blood, Amber was hysterical. She’d never had blood drawn in her life. She’d
never really been sick, that is until now. That was the worst thing I’ve
ever gone through in my life, seeing my little girl crying like I’ve never seen her before and knowing that there was
going to be more to come. What were we going to do?
On Friday night, March 4th, 2005 Amber was returning home from work and was involved
in a car accident. Her car was totaled, but she was okay. Someone up above was looking out for her. In the back
seat of her car was her bible. She carried it with her no matter where she went.
Her leg was a little messed up and she was on crutches. At the hospital
they couldn’t give her anything for pain because she was to have the needle biopsy done and she wasn’t allowed
any pain medicines or aspirin. I felt horrible for her. We just found out that she may have cancer and
now she’s crashed her car. If it weren’t for that seat belt she would have been dead, no doubt about
it. And now, she’s made it through that. What about what is to
come?
March 8, 2005 we were off to the hospital for the biopsy. They inserted 6 needles into my little girls neck while she was awake.
The doctor did an excellent job. Amber never flinched a muscle, how she did it I’ll never know. I
don’t believe that I could have made it through it. As a matter of fact, I know I couldn’t have. Then came the waiting. It seemed like years before the doctor called.
We returned to see the doctor on March 15, 2005.
It's been confirmed, Amber has cancer. I wanted to puke. Amber says, “What do we do now?” Doctor says “Our
only option is a complete thyroidectomy. We need this set up right away and I know a good surgeon in Mason/WestChester.
His name is Dr. Steward and don’t worry. He is the best of the best and don't be worried about the cosmetics
of it. You're in good hands with him.” Next stop Dr. Steward.
Quick in, quicker out. Amber saw him
in his office and was set up for surgery for March 29, 2005 at Christ Hospital in Cincinnati, Ohio. We stayed at Amber’s Nanny and Grandpa’s house the night before, my parents of course.
Nothing to eat or drink after midnight. Amber had never been in the hospital
for anything until now, so I thought it would be wise to fill her in on some things.
I told her that she would have to remove all her underclothes and that sent her THRU the ROOF. She said "I’m
not going to be rolled around on a cart buck-naked! I’m not doing it!" We
busted out laughing. She didn’t realize that she was going to have a gown on.
It was hilarious. The count down begins.
We arrived at the hospital at 6:30am. Surgery was set for 7:30am and they
were running behind. That’s not a good thing. They came in to put her IV’s
in and it was awful. I didn’t know what to do and I’m not sure that the nurses knew either. The
only thing that we did know was that it had to be done. Finally at 5:30pm
she was wheeled to the operating room. The sight of my baby being taken somewhere
without me and knowing that she was scared to death made me sick. I wanted to bawl my eyes out, but I didn’t.
I knew that I had to be strong for her. Then we waited. The longest wait of my
life. I felt like I was alone in the world, but I wasn’t. My mom
and dad were with me. I wasn’t sure what to do with myself. I just
sat there. Then the phone rings, it’s the doctor wanting a consult after the operation. My legs went to noodles. My heart was racing. Thank God my mom and dad were there. I wasn’t ready for this. The consult…
We filed into this very small room and in came Dr. Steward. He had a very
concerned look on his face. I went into a tunnel. It was as if I wasn’t even there and I wanted
so badly for someone to pinch me and wake me up from this nightmare. "Mrs. Snethen,
we had a little complication in surgery, it seems that the cancer has wrapped around Amber’s vocal cords. We didn’t
have to cut them, but we did have to stretch them pretty bad. We’ve placed a nerve stimulator on them and we
are not sure that she is going to be able to talk again. If not, we can try and fix it. Now it
may come back, but if it's not back in a month, we are going to have to go back in and try to repair the damage." My
child, never talk again? Never laugh? I couldn’t bare it, the thought of never hearing her voice again.
It sent a chill through me like no tomorrow that I couldn’t bare. I want
her fixed and I want her fixed now!! I was screaming in my head. "Also
Mrs. Snethen, there has been some serious lymph node involvement. I’ve removed many lymph nodes, but it will take
3 weeks to get the results back. There has also been some metastasis into the lung and skeletal muscle. That
will be confirmed when the results of the slides are back. I have also removed
the calcium gland, or at least I believe I have. Her thyroid was absolutely covered with the cancer and I’m not
sure if I got it or not. She will have to take calcium pills for the rest of
her life and we need to make sure that we get her dose right before we let her leave here.
As soon as she wakes in recovery we will come and get you." And with that
he left the room. Nothing but pure devastation left in that room. Nothing.
It was about an hour or so later and they
called us to come back to recovery. I was in shock! No one told me that she would have all these tubes coming
out of her, that her neck would be caked in dried blood and that she would have a pump connected to her neck for drainage.
I nearly fainted. Then the sweet, sweet sound of a quiet voice came out.
"Mom, where were you? I’ve been asking for you, but no one could hear me." I said, "Don’t worry now honey,
I’m here and so is grandpa and nanny." She said in the smallest whisper
I’ve ever heard "where is my cell phone?" That had to be the best thing
that ever came out of her mouth. I knew then that she was going to be a trooper and we were going to make it.
Those fingers went to town text messaging. The thing is, Amber didn’t tell
any of her friends so none of them knew what she was going through. Amber felt like a freak and she didn’t
have anyone her age to talk to.
Next up was the radioiodine therapy. She
underwent that on June 23, 2005, after about 3 weeks on the low iodine diet. That
was not a pleasant time. Thank goodness for the Thyca web site and the cookbook.
I don’t know what we would have done without it. We went through a weeks
worth of the radioiodine treatment, the scans, and the blood draws, the isolation. Amber
was a prisoner in her own home. She couldn’t eat dinner with us, watch TV, or join in any family functions. It was awful. She had to wash her own
clothes and clean the bathroom with this glowing solution before and after using the restroom. And to top it off, she didn’t feel good and I couldn’t do anything about it. Her hair was still falling out. It was everywhere in the car and the bathroom. She
was shedding worse than a dog.
We thought that we got some good news when we went for her 4-month check up.
Well, she started having a sore throat again and we went to the doctor. She
is now getting ready to start another round of the radioiodine therapy and the isolation again. That’s set up for
after the holidays, but she’s going to be missing out on Christmas dinner. And
that’s just sad. I’ll be keeping you posted on everything, if I don’t
lose my mind in the process.
I do know one thing. IF I HADN’T MET UP WITH STEPHANIE AND DEBBIE MY LIFE WOULD BE A TOTAL MESS. GIRLS, YOU’VE HELPED KEEP ME SEMI-SANE.
TALKING TO YOU, GETTING TO KNOW THE KIDS, WORKING TOGETHER TO MAKE PEOPLE AWARE HAS HELPED ME SO MUCH. I CAN’T
THANK YOU ENOUGH FOR COMING INTO OUR LIVES AS WELL AS INTO OUR HEARTS…3 PEAS IN A POD. GIRLS, THAT’S WHAT WE ARE.
I LOVE YOU WITH ALL MY HEART. THANK YOU!!! Missy
February 1, 2006
Well, here we are again with an update.
In September we went for a check-up. We thought everything
was gong fine. Things seemed normal, as normal as they could seem anyway. We went through our normal routine,
the check-up, blood work and so on. Then we were told that we would hear something back in regards to the blood work
in a few days. So we waited. It was only a day or so when the call came in, it was Dr. Steiner's nurse.
"We have good news. The blood work came back and there are no signs or occurring or reoccurring cancer." The world
had be lifted off our shoulders, and Amber wasn't home from school so that I could squeeze the stuffing out of her.
The first thing I did was call everyone I knew to tell them that she was cancer free!!!!... or so
we thought.
It was about a month and a half later when it started creeping it's
way back into our lives. I was standing in the kitchen when Amber walked in the door from school. "Mom,"
she said "I think I need to go to the doctor, my throat is getting sore and it's really bothering me." PANIC!!
I nearly passed out. I grabbed the phone and called our family doctor. We got in within a few days. They did
a strep test on her, that's how it all started in the first darn place. All that time wasted with everyone thinking
she had strep throat, but that's another story. Dr. Jarrett suggested that we go and see Dr. Steiner when the test
came back negative. So off we went again. I could feel it in my bones, it was back. That familiar
sickness filled my stomach yet again.
Off to see Dr. Steiner. We walked into the office with a huge
cloud of gloom hanging over us. Amber and I got into an argument in the parking lot so nerves were at attention.
They took us back to the examining room, the tension so thick you could cut it with a knife. There we waited what seemed
like an eternity, and finally the door swung open. The Dr. had a funny look on his face, you know the kind, like what
are you doing here? He sat down and asked a few questions and then started feeling her neck. I knew
when he paused for just that brief second to concentrate on the right side of her neck that he found something. I
hesitated and said "What is it, you've felt something, haven't you?" He then said "Amber, have you had any
swelling in your face?" She replied "No." I just about went nuts. It was only a day earlier that
her face was so swollen that her ear was sticking out as if she had "cauliflower ear." That's when I interrupted
and said that she did in fact have swelling and to that he replied "I know she has, her face and neck are swollen now.
Amber it is important that you tell me these things. There might be something going on and I need to know about it."
She rolled her eyes. It's as though she didn't want to believe that it was back, but then again would you? He
told us that he was going to send off her blood work to a special lab in California and that when he got the results back,
he would call. So off she went to have blood drawn yet again. Here we go!! They had to call the lab
to see how it was to be collected, the lab had to send special packing material and all that jazz so she had to go back and
have the blood taken in a few days. Six days went by and the call came in. We need for Amber
to come in on Tuesday at 3:30pm. Okay.. and off we went.
Upon meeting with Dr. Steiner again, we learned that YES
the cancer is back, YES she was going to have to go back on the low iodine diet and YES she was going to have another
round of radioiodine. This would all be taking place over her Christmas break from school. That meant no cookies,
candies, ham, mashed taters, (her favorite) not even so much as a candy cane. The ablation was set for Dec.
28th 2005. Happy New Year, huh?
Well, she was supposed to go for a PET scan or a whole body
scan before that treatment, but more blood work came back and again we were called to that horrible office of doom.
It seems that her counts came back and it was QUITE OBVIOUS that the cancer had returned and the doctor thought
that it would be a waste for her to even undergo the scans at that time. He was setting her up for the treatment within
a few days. He then sent us home to be called by the nurse in regards to what time to be at the hospital.
The call came on a Friday. She was to be at the hospital on
Wednesday at 6:30 am for her STAT pregnancy test and for an ultrasound of the "KNOT" on the right side of her neck.
The ablation would follow that. She went in for the ultrasound and I got to go in with her, you could see
what appeared to be "potholes" in her lymph nodes. There was an empty space where her thyroid gland used to
be. The strange thing... the mass wasn't there. I found out later that many people prayed for it to go away.
Off to the waiting room to wait for her to get "dosed."
The nurse came to get us. Time to go to the little
room. Amber slid out of the chair she was snoozing in while waiting. We walked down that long cold hall.
I didn't want to go into this room again. There we sat... some robot looking machine in the corner, a cold metal tray
in front of us, and a stack of papers for me to sign. It wasn't much longer when Dr. Steiner came in.
He sat in his chair stiff as a board and said "This is what I'm going to do. I am giving you a large dose of radioiodine.
This is what you would call a "SHOCK' treatment. Seeing as how I didn't want to give you the low doses that
would have been a waste, I'm just jumping in with both feet. After this you can't have anymore radiation. Do you
understand? Your chances of developing bone marrow suppression has increased dramatically.... Do you understand?" To
myself I'm thinking.. UMMMM...NO!! That is when I asked "Just what do you mean? What other treatment
is there after this? You said that you wouldn't use Thyrogen or external beam radiation." He said that there
are other forms along with the Thyrogen injections. Then I was asked to leave the room. I stood in the hall
with my sister. My heart was pounding, I was sweating like a pig, my chest was killing me. A nurse walked
by and asked if I was ok? I said "No, I think I'm having a heart attack." She said "I think you
need to go to the E.R." and she asked my sister if she would take Amber home after she was dosed. I said "No, I
am going home with my daughter. Whatever it is with me will have to wait. I think it was just anxiety. I
then went down to the pharmacy to get the "GLOWING GOO" and went back upstairs to collect my precious little girl
to take home. This would be the last time I could be somewhat close to her for a week.
The isolation begins.. yet again. This time after treatment
Amber was sick, her color was off and all she did was sleep. I could just barely get her to eat. To this
day her color is still off, rather grey she is. Her head is constantly hurting. She just doesn't feel well at
all. I did get notice from the doctor that there has been some improvement in her scan after this dose compared
to the first one. But when we asked if the treatment was doing any good his answer was "I don't' know, we
don't know." That's not what you want to hear after all this.
She goes back to the doctor in April, if not before. Her
throat is getting sore again and the back of her throat looks like "raw meat" almost like ulcers. We have yet another
appointment with our family doctor soon, it's like we are starting all over again. How is she supposed to
go to college? She is missing out on so much not being able to attend school all the time. Ughhhh... another update
when we know something new. Until then, TAKE CARE ALL... AND THANKS FOR SUPPORTING US ALL...MISSY
