15 years is a long time.
Lots of things can happen over the course of 15 years.
My illness journey happened to start 15 years ago.
I decided that I’d walk through it with you…
2001 – On October 10, my world changed as I knew it.
I was in 8th grade and just coming off of the high of placing 2nd in a state champsionship softball tournament. While we celebrated at a Mexican restaurant, I started having trouble with one of my eyes. As the catcher on the team, I thought that I had simply gotten some dirt in it and it would be better in the morning.
When it hadn’t improved the next morning, and instead had swollen shut, I asked my parents if I could stay home from school. They agreed, thinking the swelling would decrease within a few hours.
Those few hours had passed and there had been no reduction in swelling, so my mother (an RN) thought it was time to take me to the hospital. She sent my dad upstairs to help me get ready and as he was telling me to brush my teeth, I kept saying I was doing it – except my hands were not moving.
On the way out to the garage, I had a metabolic seizure and my dad rushed me to the local hospital in record time.
Once I was stabilized, I was transferred to a St. Louis hospital where they diagnosed me with a chronic kidney disorder called Membranoproliferative Glomerulonephritis Type II. It is a disease where the waste-filtering capillaries of your kidneys become inflamed and your body’s immune system begins to function abnormally, attacking the healthy cells in your kidneys.
I returned home from St. Louis to have a broviac catheter placed and began dialysis on the day before my 14th birthday.
2002 – Every Monday, Wednesday and Friday after school, I would get dropped off at the local dialysis center and hook up to a machine for 3.5 hours each day while it pulled excess fluid off of my body, doing the job that my natural kidneys were no longer doing.
I had a dialysis access placed in my left forearm – a graft, a foam-like tube that connects an artery with a vein, to create a more permanent access for the frequent dialysis.
Soon after my diagnosis, my name was put on the National Transplant Waiting List and my family received a pager. Upon receiving it, we were told that on the day it went off, we would be one of several matching people called. The process would be on a first-come, first-serve basis and the operation would not be done if I happened to be sick, even with only a cold!
We also began receiving offers from family members and friends who were blood type matches that they were willing to donate their kidneys.
My maternal aunt was the closest match and we went through many tests together at a St. Louis hospital. Unfortunately, one of the last tests showed that the final “hook-up” between kidneys was not going to work and we were back at square one.
On December 16, I was sitting in my first-hour class when the secretary came to the classroom. She called me out of the classroom and said, “They found a kidney!”
I quickly retrieved my things and waited for my mom, as it was important we arrived in St. Louis as quickly as possible.
Upon arrival, the transplant team saw that I wasn’t sick – and they also informed us that I had been the only match called for this particular kidney. Even to this day, I still don’t understand why that is – except that God must have designated that kidney especially for me. Four hours later, I had a new kidney and life could finally return to normal for this teenager!
2003 – I developed a bad cough in the summer of 2003. I had a few tests done and was told that I had PTLD – Post transplant lymphoproliferative disorder. This was one of the complications that could happen after receiving the kidney transplant and having a suppressed immune system. At 15 years old, I had 6 months of chemotherapy.
How ironic it was that my one year transplant anniversary fell on the final day of my chemotherapy – December 16th.
2004 – A few months after finishing chemo, I was informed that I was eligible for Make-A-Wish. After giving it much thought and contemplation, my wish was for a new piano. After my transplant and cancer diagnosis, my time playing sports was quite limited, so I had turned to music to help me cope. It was a tall order – asking for a baby grand piano – but I had the greatest wish granters and they went above and beyond to make it happen for me. In April, I received my “grand” wish!
2005 – In August, I began my senior year of high school. With my major health crises behind me, I was looking forward to finishing up my final year of high school and attending college somewhere far away. I was ready for that brand new start! I attended several college tour days and planned to study Music Therapy.
2006 – Unfortunately, my health battles were not yet over. A few months before my high school graduation, I started having pain upon taking a deep breath. Because of my health history, this wasn’t taken lightly. Tests showed a tumor – Ewing’s sarcoma – on my T3 vertebrae (upper spine).
2007 – I had 11 months of chemotherapy and 12 weeks of radiation to get rid of this beast once and for all.
Upon finishing treatment in early 2007, I celebrated by going skydiving!
(Something that I would be scared out of my wits to do now!)
2008 – In 2008, I graduated with my Associates degree and planned to transfer to a 4-year university. I had initially wanted to study Music Therapy, but changed my focus to Psychology as I became more familiar with it. I worked hard to earn scholarships designed for transfer students, and was lucky enough to have had the grades that earned me a full ride for two years – just what I needed! I moved to Macomb to attend Western Illinois University.
This move, however, brought more than just a degree for me. It was also where I met my husband.
(Read about our fabulous story here and here)
2009 – I participated in a lot of research groups while attending Western. I enjoyed the Psychology field very much and enjoyed the atmosphere that college far from home brought. I had yearly check ups and scans with my doctors and everything looked great!
2010 – In March, I met and started dating Michael. In May, I graduated from Western. We knew that we didn’t want to be apart from each other, so I decided to stay in the Macomb area. I was very blessed to land a job just one month post-graduation. All was still going well!!
2011 – Jobs changed a time or two over the next couple of years, and my health remained under control – no fears of relapse or anything of that nature.
2012 – In early 2012, Michael and I took a trip to Belize to visit one of my friends. This was actually the location where I had skydived back in 2007 to celebrate the completion of treatment, so it was very cool to return! While on this trip, Michael proposed! Of course, I said yes and we began planning our wedding.
2013 – We decided to have a long engagement, so we enjoyed a couple years of being engaged and continuing along with good health reports.
2014 – On May 31, we got married. It was the best day of our lives and we remained on cloud nine for weeks! Health reports still continued to look good.
2015 – We discovered that I was pregnant shortly after Valentine’s Day and we were thrilled!
My health had been on an uphill for many years and we were ready for this next step in our lives. Near the end of June, at approximately 23 weeks pregnant, I began having severe shortness of breath. I knew that shortness of breath was a common pregnancy symptom, but my gut told me that this was something serious. My OB doctor told me to make the 2-hour drive to see him so that he could rule anything out.
Upon arrival, a chest X-ray was performed and the doctors saw an extensive amount of fluid in my left lung.
I immediately had a chest tube put in to drain the fluid. The hospital staff was fabulous at doing the minimum testing needed to help diagnose me while protecting my unborn child at the same time.
Once the fluid was drained, they could see several masses in the pleural lining of my left lung. After one week in the hospital and an official biopsy, I was diagnosed with a recurrence of Ewing’s sarcoma.
My husband and I were devastated.
Just two days before all of this had happened, my husband and I had found out that we were having a little girl!
Now we were wondering if she would make it through this with me.
Since there were multiple tumors taking up a lot of pleural space, we didn’t have time to wait.
I had a port placed immediately and chemotherapy was started a few days later.
That first day of chemo – July 13 – was excruciatingly difficult.
I could not stop crying and worrying about how this baby inside of me would handle all of this.
I had three cycles of chemotherapy while pregnant.
5 days at a time, every 3 weeks.
We made a plan to induce at 6 weeks early so that I didn’t run the risk of going into labor while my blood counts were very low. On September 15, we welcomed our beautiful baby girl, Abigail, into the world.
I had a 4th round of chemo one week after Abbie was born.
When she was one month old, I had a thoracotomy and tumor resect surgery, where they scraped the remaining tumors out of the pleural cavity.
2 final sessions of chemo followed to make sure the cancer was gone.
My final chemotherapy was on December 11, 2015.
2016 – I returned to work in February, which was extremely difficult, having to leave Abbie. I had been back for 4 weeks when I started having pain on the side where my surgery had been done.
Testing was done immediately and showed the worst news possible – a relapse.
A mere 3 months after finishing treatment.
(I wrote my feelings down right after I had been diagnosed. Read it here.)
I began a regimen of different chemotherapy drugs in March and prayed like mad that they would get rid of it.
In April, I established with a Ewing’s sarcoma specialist at the Cleveland Clinic. He put me on a regimen of chemotherapy to treat the relapse. Unfortunately, it didn’t work, so we changed up the regimen again in June. This also didn’t work, so the regimen was changed once again.
During my visit in August, I found out that this third treatment regimen in 4 months was also not working. The tumors in the pleural cavity were still continuing to grow. It was agreed that surgery would be the best option to get rid of this disease, so we met with a thoracic surgeon and put together a plan.
The plan included a complete removal of my left lung. We wanted to leave nothing to chance – the goal was to get all of the cancer out.
Losing a vital piece of your body, such as your lung, is very scary and definitely comes with its concerns. However, I knew that this was the best option to help me, so a date for surgery was set.
Originally scheduled for the end of September, surgery was rescheduled two more times. The final date for surgery ended up being October 10, 2016.
Does that date ring a bell?
It happened to be the same day that I had my seizure in 2001 – the day in which all of my health issues began.
It has been 15 years of doctor visits.
Blood draws and port sticks.
Major and minor surgeries.
Multitudes of various scans.
Waiting on test results.
Explaining my illnesses to those who inquire about it.
Four times of losing my hair.
Years of survivor guilt.
Establishing with specialists in several states.
And that constant fear, always in the back of my mind, that I wasn’t really ever done…
Between 2007 and 2015, I was considered in remission. I still had follow-up visits, but my life was at a wonderful normal during that time. College, marriage and pregnancy all happened for me; this was such a blessing for me because after October 10, 2001, there were times when I didn’t think that I would see any of those days.
But I did get to see them. And luckily, I got to see them when I was feeling at my best! For that, I’ll be forever grateful.
Now we’re back on this road of doctor appointments, scans and chemo, but with the hope that it will get rid of this once and for all.
As unfair as it may seem, I try not to let the worry and fear take over. I have a beautiful baby girl – a miracle baby – who inspires me to keep fighting every single day.
I appreciate that you took the time to read this extra-long blog post. I encourage you to keep those in your prayers who are fighting illnesses, especially chronic illnesses. It does take up much of your time, but it’s in figuring out how to make the best out of that time where you truly find contentment.
And having family support is absolutely priceless…