My Story

Like most people I had a pretty clear vision for my future…I was going to play sports for the rest of my life.  The biggest reason for going to college was so I could continue my athletic career.  The only thing is sometimes God has a different plan for you.

You see, I grew up on a dairy farm in a really small town, so small it wasn’t even on the map.  And I wanted to do everything my older brother did, I was literally in his shadow all the time.  Every evening if my father finished working early enough, he, my bother and Art (hired hand on the farm) would play basketball until dark.  I on the other hand had to impatiently watch on the sidelines I wasn’t big enough to play yet, I couldn’t even get the ball to the hoop.  But every time that ball went out of bounds over the hill I went tearing after it just so I could touch the ball. 

After a few more years and to a young kid what felt like an eternity I could finally get the ball up to the basket, so my dad started letting me play.  The other two didn’t want anything to do with me so my dad always took me as his teammate. Now we didn’t have a fancy set up, we played on gravel.  So, you had to be an exceptionally good ball handler, and as I found out the hard way you had to have pretty tough skin.  The first time I fell down I felt a tear coming on when I looked down at my bloody knee and hands.  My brother came along beside me and picked me up and said, “there is no crying if you are going to play with us”.  So, I shook my head wiped off all the gravel and learned to deal with the blood.

About a year later I took a ball off the end of my finger,and I had never felt pain like that before.  So, I told my dad I would be right back I ran around the corner went in the barn a cried for a few minutes because my finger hurt so bad, but I couldn’t let them see me crying.  I wiped the tears and went back out there my finger was already 3 times its normal size and turning black and blue.  (I never found out what was wrong with my finger, I was told we didn’t worry about injuries to the fingers when we played basketball).

Over the years I began playing other sports as well, and I even started lifting weights, since I was always one of the smallest girls on the court or field.  As I developed, I started improving and my father and I could compete equally with my brother and Art and even won now and again.

I developed into a pretty good athlete however things started to change my junior year of high school.  I broke my ankle sliding into home plate, and after that injury I spent my senior year fighting injury after injury, a broken thumb, two stress fractures and a severally sprained ankle.  By Christmas time of my freshman year in college the ankle I had broken was hurting so bad, I didn’t want to walk on it much less play basketball, but I pushed through as always.  When I got home for the summer my parents decided it was time to see a doctor about my ankle.  The surgeon didn’t even need to run any tests, he told us surgery was required.  Unfortunately, the surgery was only mildly successful.  We found out that my ankle had never healed correctly after I broke it.  Rather than healing with smooth edges my bones healed in a jagged pattern. He cleaned out what he could, but my ankle was too small to get his tools inside to clean up everything.  I spent the next six months rehabbing the ankle and had to red shirt basketball for my sophomore year of college.  I was super excited when I was finally cleared for play just in time for the start of the spring softball season.

Unfortunately, that season didn’t go any better, my ankle was manageable, but I started getting really sick every single month, bronchitis one month a sinus infection the next and sometimes both.  Then I had a freak injury in practice, I broke my thumb from one of the really soft indoor balls.  Two weeks later I had another injury to my collarbone, and the funny thing is I wasn’t even playing I was still sitting out because of my thumb.  The trainers had no idea how I sustained that injury.

I remember being very tired when I got home for summer break, and I told my dad I just want to take a couple weeks off from my summer job to rest and recover from the school year.  This was back in the day when parents didn't let their kids just sit around and there was no taking the summer off let alone a few weeks, so my dad pushed me to go to work. I can remember waking up that first Monday morning for work and I had that pain in my collarbone again.  I told my mom I didn’t feel very good and I wanted to call in sick.  Again, my father said, nothing doing you are going to work, you were out playing ball the night before you are just fine.  All day long the pain just kept getting worse.  When I got home, I called my mother and told her I was feeling worse, she worked for a chiropractor at the time, so she told me to come into the office and let him take a look.  Dr. Cole told my mom and I that I had just strained the muscles at softball practice Sunday night and to give it time.

The next morning when I woke up, I could barely get out of bed the pain was so intense, I told my mom and dad and of course my dad told me I was faking that I just didn’t want to go to work. I told you he was old school – wink, wink – old school, ‘just rub some dirt on it’ kind of guy. Now remember when I said life sometimes throws you a curveball you weren’t expecting. Well this was one of those curveballs that was about to change my world. Thankfully my mother took pity on me and took me to the doctors.  The pediatrician looked at my collarbone and told my mother he believed it was a tumor of some sort and wanted me to see an orthopedic doctor right away. 

(You can imagine how guilty my father was feeling when my mother broke the news to him that evening.  I am still using that guilt today whenever I need it).

The pediatrician got me into a local doctor the next day.  After a two hour wait while I was in excruciating pain, he saw me for about 2 minutes and told my mom to bring me back in two weeks if it wasn’t better and he would stick a needle in it.  My parents weren’t very happy with the outcome of this visit and thought it was pretty much a waste of time no way were they waiting two weeks for answers.

The very next day my father (who is now involved) called the orthopedic doctor who did my ankle surgery and he saw me the same day, he agreed there was something there and he wanted immediate answers as well.  So, Dr. Spence sent me straight to the hospital for bone scans and read them the same day.  It was in his opinion that I needed to see an orthopedic oncologist as this was out of his domain.  He just happened to know the top guy in Baltimore and got me an appointment.  It helps to know people because Dr. Levine was going on sabbatical and was not taking on any new patients, we were very thankful to Dr. Spence for getting me in.

Dr. Levine did blood work and cat scans to rule out other cancers, but he was pretty confident I had some form of bone cancer.  A few days later I was scheduled for a bone biopsy where they took out a large piece of my collarbone.  The results came back positive for Ewing’s Sarcoma and I was immediately scheduled for surgery to have my collarbone removed.

The day of surgery right before they were ready to take me back the doctor came out and told me and my parents, they were putting the surgery on hold, they no longer thought it was Ewing’s Sarcoma, my most recent blood work was showing something else.  At this point I was in so much pain it took two people to get me out of bed and I could barely have anyone touch any part of my body without me feeling excruciating pain.  But home we went, all of us a little more upset and frustrated, it had now been almost 3 weeks without a confirming diagnosis.

The next day my mom came rushing into my room telling me they were getting me up so we could go back to the hospital.  They thought they knew what was wrong, but they needed to run one more test to confirm.  I needed to have a bone marrow aspiration and biopsy.  That is where they make an incision and place a large bore needle through the bone into the marrow and perform the aspiration and bone biopsy.  Under normal circumstances this might be one of the worst tests ever even with the drugs they provide you during the procedure.  I later found out because the cancer had spread to every organ in my body and I had very little healthy blood left they could not give me any anesthesia, because my liver was not functioning well enough to flush the drugs out of my system. Imagine the worst pain you ever had in your life..10x that and that’s what it feels like to have a needle stuck into your bone without anesthesia. 

The results came back positive for Acute Lymphocytic Leukemia or ALL.  Typically, this is something that is diagnosed fairly quickly, for me the process took a month.  And they concluded that all the symptoms I had that spring and the previous fall were a result of Leukemia.  They were a little troubled with the diagnosis at first, ALL is the type of leukemia young children get and it was very rare for someone my age to get it, and there was some brief talk about whether or not I should receive my treatment at the Children’s Hospital in DC. or stay in Baltimore.  In the end the hospital in Baltimore decided at age 19 it was best if they kept me there. 

With my age and the level of progression of the cancer, the doctors told my parents the standard treatment protocol did not offer me a chance for long term survival.  But there was an experimental protocol they were working on and I qualified for that.  Without much of a choice my parents and the doctor had me sign my life away to join the experimental protocol. So, imagine, this. I’m just diagnosed with cancer. Awesome. They’re saying it’s super rare. Even more awesome. And the best treatment they have for me is experimental. What lottery did I win? Unfortunately, that wasn’t even the worst news. It was later on when I found out that the doctors had told my parents that I only had about 6 weeks to live. How many of you are parents? Now imagine getting the news that your daughter only has 6 weeks to live. Now, I can understand why I was never told; I may have just packed it in because at the time my thoughts were, I was returning to school in the fall.

Little did I know how sick I was and how much sicker I would become over the next few months. I can’t tell you how many times I thought just please take me because I can’t do this anymore.  Believe it or not in the beginning it was sometimes worse being home instead of being in the hospital.  At home I would just lay on the couch in the dark and I felt to bad to even lay there, much less eat, drink or do anything that resembled living. But then things would get a little better and I would get some fight back in me and I would keep going or I would take a turn for the worse and end up back in the hospital.  When you’re in the hospital it’s a little different you always have someone there 24/7 interrupting you so I guess your time lying in bed goes by a little faster.  And so long as I was in the hospital, I didn’t have my mom getting upset with me because I wasn’t eating or drinking the IV lines took care of that for me.  (As a parent I can finally appreciate the stress she was feeling).

I did have some weeks here and there were I felt well enough to actually leave the couch, I even talked the doctors into letting me play some softball that summer. 

Unfortunately, the good weeks never lasted very long, and I typically ended up back in the hospital. During that summer the chemo made me have what they called chemical anorexia and I lost so much weight I couldn’t even wear my normal clothes, my mom had to dig things out of the attic from when I was younger.

My roughest month was August that summer, I was admitted to the hospital for simple heparin injections, my semi-permanent catheter had slipped out of the main vessel into a much smaller one and created blood clots throughout my shoulder region. 

I didn’t even realize that every day I was getting a little weaker, and then one day my nurse came in and said we were taking a trip. I got a little excited when she and my mom started packing everything up, I thought maybe they were sending me home. I was excited until I learned they were taking me to another wing of the hospital, the ICU.

I can honestly say I don’t remember a lot of what happened to me during this time. However, the one major thing I can remember – in fact, it’s still quite clear to me today – is not being able to breath.  They kept putting this really big black mask on my face that suffocated me and I kept trying to take it off.  At the time I had no idea it was a full-face oxygen mask.  I also had no idea my breathing was so compromised at that point, that they were contemplating the use of a respirator.

Many years later my dad shared some more details about that particular stay in the ICU.  At my worst point they were told to stay the night and that it was time to call in the priest as I would probably not make it through the night.  He also shared some of the details about the surgery I had so they could finally figure out what was going on.  I had a thoracotomy, that is where they make a long incision following the rib cage and then use the rib spreaders to open you up so they can get to the lungs.  I have enough staples in me that I light up the camera every time I go through security at the airport. If you had a strong enough magnet you could probably pull me towards you. J

As I said I don’t remember a lot of details about my ICU stay but I do remember the recovery, I had more visits to the respiratory department than I care to remember, and I also remember feeling like that hospital stay was never going to end.  After the surgery they discovered that one of the chemo treatments I had burned my lungs severely causing chemical pneumonia. This was very rare and only one other person in the protocol had ever experienced this side effect, which was why the doctors had so much trouble understanding what was wrong. Once they discovered that complication, they had to rethink my treatment plan.  It was obvious I could no longer receive that chemo drug anymore.  So, for the next two years they put me on more of a maintenance protocol a long with head and spinal radiation.

About 4 months later that severe bone pain was back however this time it was in my knee.  So, they decided the maintenance protocol wasn’t working and they needed to put me on a new plan. They also decided I needed a bone marrow transplant for any hopes of long-term survival since the chemo treatments were not working as they had hoped, so we started the transplant process.

They started searching through the National Donor Registry and held multiple Bone Marrow Donation drives, but we were never able to find a 5 or a 6 out of 6 match. My brother was a 4 out of 6 match which was not ideal, but the university of Kentucky hospital was willing to perform the transplant. I had been transferred there because they were better equipped to handle the high-risk transplants.  After a big fight with the insurance company – just gotta’ love those insurance companies – and waiting for a bed to open, my time had come.  We were ready to make Kentucky home for a very long 6- 8 months.

By this time, I had made my peace with everything and everyone and said my final goodbyes to all my friends and family.  I understood that one of the drugs I would be receiving in very large doses, was the exact chemo drug that had burnt my lungs so bad the previous summer, and I was told I the summer before I would not survive that chemo again, even at the small doses they were given me. 

So, here I am heading to a hospital to get very large doses of a drug no one will admit out loud is going to kill me. It just kept getting better however…You see, the day before I am scheduled to get started, I break out with not 1 but 2 big toe infections.  In my opinion I believe that it was a message from God; that it was not quite my time and that I was not supposed to be getting this transplant.  The doctors started reviewing my charts again and decided I had never gone out of remission and that the transplant was no longer a good idea for me. Why they couldn’t have decided this before all our trips to Kentucky I don’t know, but who was I to argue, I was going to live at least for a little longer.

I came home and began a different protocol, this one not being so bad, I even did well enough on it that they allowed me to go back to school in the fall for my junior year with the following expectations:  I had to drive into the city of Erie to the Regional Cancer Center to receive my treatments a couple times a month and I had to go into town once a week to have my blood drawn and have it Fed Exed to Baltimore.  I also had to drive home to Baltimore once a month for a checkup and treatments.  It wasn’t ideal but I didn’t care because I was f-i-n-a-l-l-y back to school.

As much as I wanted to be back at school, once there I found it to be very difficult.  Suddenly living in an environment where I was the only one without hair and I was the only one sick made me – and I suspect the people around me – really uncomfortable.  The adjustments took forever and to be honest I don’t think I ever felt like I fit in.  I began to feel really self-conscious and was no longer sure this was such a good idea, I was bald, skinny as could be and looked like I belonged in a hospital with the sick.

And that first semester back I had to complete one of my internships at a local high school as a part of my teaching degree, and I had a very uncomfortable run in with the principal.  It was my first day and the first day of school for the students.  I was standing outside the locker room with some of the other students waiting for my cooperating teacher to arrive and let us in.  The principal comes up to me and starts berating me for wearing a hat, (as all students know hats are strictly forbidden inside the school).  I tried to explain to him that I was not a student at the school, and I was not wearing my hat out of any disrespect to the rules, I had cancer and a bald head. 

Later that afternoon I got a call from my college professor for that class asking if I could meet with him.  It is important to understand I have never had this professor for any class, so he doesn’t know me or my character, so to be sitting in his office made me feel really stressed out.  He informed me that he had received a call from the principal at my high school.  The principal went on to tell him that I had caused a huge scene and disturbance at his school that morning and that was a problem.  He went on to say that hats were forbidden, and I broke the rules and was disrespectful. 

Sitting in that advisor’s office, I felt about 2 inches tall and all my feelings about not belonging back in the real world were being uncomfortably reinforced by this encounter.  I wanted to crawl in a hole and never come out (this was absolutely the lowest I could possibly feel).  I felt like nobody understood what I was feeling right then and there. As the day went on some of my other professors and advisors found out and were very upset with what happened and how it was handled.  Knowing me, they knew I would have never created the scene that the principal was describing. 

All my friends (and even my family and friends back home) went out a bought me the most obnoxious bandanas they could find.  They wanted me to be able to show that principal that he couldn’t break me.  That situation definitely did nothing to help my confidence and feelings of should I or shouldn’t I be there, but at least I knew I had some people there that supported me.  I believe God will always send us the things we need, if those friends didn’t stand up for me that day, I’m not sure I would have had the courage to finish the internship that semester.

I had a rocky junior year for certain, not only did I have to battle people who didn’t understand what I was going through I had infections and 104-degree fevers almost every month.  Despite my illness and my treatments, I continued to work in the training room getting hours for my Athletic training internship, played softball and carried more than a full load of classes.  I was determined to graduate with my class even though I missed a year.

That treatment plan that I was on lasted for the full school year and the rest of the following summer. One outpatient visit that summer, it was just my dad and I at the appointment, the doctor came out and told us I have some news.  “You are no longer in remission”.  My heart sank, if you remember I was told that without a successful transplant my chances of long-term survival were zero. I am not even sure I heard the second part of the doctor’s comment – “you see you are no longer in remission because you are now considered cured”.

To this day my father continues to tell me and everyone else he knows that, that was the best news he had ever been giving in his life., and that his only regret was that my mom was not there that day to hear it.

I graduated from college with honors, a teacher’s degree and as a certified athletic trainer.  (And I graduated with my class).  But I soon found out I would not be working as a full-time athletic trainer any time soon.  They didn’t offer the type of health insurance I was currently subscribed too.  And with my medical history no other insurance company would pick me up.  So, I took a teaching position (the county offered my insurance plan) and worked part-time as a trainer.

I spent the next  few years trying to adjust to life without cancer and learning to accept the new me.  I was never going to be the athlete I once was and the only identity I ever knew was now gone.  However, as I am reflective of my journey, my illness, treatment, ongoing stress, anxiety, illnesses and treatments, there were two things that kept me going, kept me fighting…

The first was a plaque one of my nurses gave me during my intensive ICU stay.  The plaque had the Jeremiah 29:11 bible verse written on it.  “¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”.  I kept that verse with me throughout my treatment and even afterwards whenever I had doubts, I would read it over and over until it stuck, and I believed it.

The second, was my goal.  My mom would bring me in magazines to read while I was in the hospital.  Usually I would only read sports related magazines, but she didn’t bring those as often, probably because she knew I was missing being with my teammates.  She brought in this Women’s magazine, I can’t even remember the name of it, but it was all about active women, hiking biking etc. 

I remember reading an article that talked about marathons and how less than 1% of the population in the world has completed one.  Right then and there that became my goal; I was going to run a marathon when I got better.  I was going to do something the average person can’t, that only 1% of the population could do.  I knew I could never be the same athlete again, but decided this sick, skinny, bald woman was going to do what only 1% of the population could do. This goal gave me hope and whenever I had doubts, I thought about that goal.

By luck, more likely it was my destiny, I received a Team in Training advertisement in the mail.  Team in Training is run by the Leukemia and Lymphoma Society and it is one of their top fund raisers.  Team in Training works with people to train them and get them ready for race events for free so long as you raise donations during your training.  I signed myself up and started my training.  Despite my lungs and heart not working well and the fact that I still had stiffness from my ankle surgery, in June 2006 I ran my full marathon 26.2 miles in beautiful San Diego California for the Leukemia and Lymphoma society.  I also raised over $7,000 during my training.

Even this goal proved to have a few extra surprises for me. During my training, I developed pneumonia and bronchitis, which given my lung damage and heart issues wasn’t great. And on the last week of my training before the race, I developed a high arch sprain that led to a knee sprain.  But this was my goal, my dream and nothing was going to stand in my way. 

I made it to the race. The first 10 miles were great, the next 10 not so great, and the last 6 were, how can I say this, they were miserable.  The coaches running with us kept telling me to go to the first aid tent at mile 20 and I told them no way, finishing this race meant more to me than any other athletic accomplishment in my life.  This was no longer about being an athlete this was about fulfilling a promise I had made to myself 16 years ago.  What really help ground me, both figuratively and literally, was that I had the Jeramiah 29:11 verse written on my shoe. Once again it was that same verse getting me through a difficult time in my life.

During the 5-6 years after my illness, I got married to the man who stood by me the entire time.  I was 19 when I was sick, and in reality, how many 19-year old’s have children at the top of their mind or priorities?  Many times, during my illness the doctors mentioned that children would be a problem for me later in life and if I want to be certain, I should have my eggs harvested.  At that point I had no intentions of ever getting married much less having children, so I can’t say I ever gave it a second thought.

But at age 26-27 with my health restored, I started thinking I would like to have more than just a husband but was worried how my past might impact the process.  After many doctors’ visits and numerous consultations with my oncologist, I was assured that the chemotherapy drugs, radiation and my illness would have no bearing on my future children.  Still with a whole lot of trepidation we moved forward and I am happy to say that today I have two beautiful children; Joey 20 who’s studying sales and business and Brianna 17 who’s going to Franklin and Marshall next year to study Premed and play soccer, both of whom have turned out as perfect as a parent could expect.  I cherish my family, my children, my husband, my health, and my life more than I can ever express. 

I know that all these trials, tribulations, times of despair, wanting to give up, getting one more treatment, fighting for one more day, was all for a reason. Prior to my illness I was pretty self-absorbed with myself and my own needs.  When I reflect back, I certainly didn’t have the compassion or the emotional skills it would have taken to become a good teacher or athletic trainer, much less have the patience or ability to work with people every day.

I now know that God gave me a second chance, not to become a different person but to become a better person, the person I was created to be.  My illness gave me a chance and the time to step back and see the bigger picture.  I learned the world did not revolve around me and my needs.

Through my past experiences I have been able to live in the shoes of many of my clients.I understand what it feels like to hit the bottom of the hole and not be able to climb out I know the amount of courage and fight it takes to make your dreams and goals come true and I love being able to help people see their potential and helping them become their best version!