This blog will be a way for me to be honest with myself and others. In order to start out on the right foot, I’m beginning with my whole story. That way we begin with a relationship of openness. I hope you will join me. I have grown up in a Christian home. We are at church every time the doors are open, and sometimes when they are not. I was saved at a very young age and baptized about a year and a half later. From the time I was born my life has revolved around Christian beliefs and values.

During the summer of 2007, a family member commented that I had started to put on weight. After a couple months I started noticing other symptoms such as headaches, muscle weakness, and stunted growth. We talked to a nurse about these symptoms and she said that they usually preceed a growth spurt, so we waited a few months. Nothing happened and when my parents brought it up again we were told to be patient because growth spurts can take a while. After waiting almost two years after symptoms first started with no signs of a growth spurt, I went to the doctor to get tests. My doctor discovered that I had too much cortisol in my body. “This is called hypercortisolism, or Cushing’s syndrome,” I was told. More tests were done to determine where the excess cortisol was coming from and how high my levels were while on different medications. After some scans a tumor was found just outside my pituitary gland. These are normal results for a Cushing’s patient so even though I had been diagnosed with a very rare disease, everything was going according to protocol. A surgery to remove that tumor was scheduled in August of 2009. When I woke up from surgery, I felt great, despite the doctors warnings that I would feel sick due to the re-balancing hormones. I was sure that I was one of the lucky ones who got an easy recovery, because this surgery just didn’t fail. After a few days the doctor stunned us with the news that “the surgery was unsuccessful.”

We were devastated. I went from the kid with the rare disease to the patient that no doctor knew what to do with. I bounced from doctor to doctor until I was referred to the National Institutes of Health, a research hospital in Bethesda, Maryland. There I was enrolled in a study led by the best endocrinologist in the world. That first week I had a myriad of tests, from full body scans and complete blood tests to a high-tech procedure called an IPSS, done to discover which side of my brain was producing more cortisol. To the doctors surprise a tumor was found on the tail of my pancreas, but still the doctors were confident that this was causing my Cushing’s. “This is rare,” we were told. “But not completely unheard of.” Unfortunately the doctors were also fairly sure that the tumor was malignant cancer. My parents were told and they prepared themselves for months of chemotherapy and possibly radiation. After a couple more detailed and high-tech tests, we were told that while the cancer was not malignant, it was untreatable. I was diagnosed with a pancreatic neuroendocrine tumor (pNET). I had surgery in March of 2010 to remove the tumor, and when I woke up feeling like I had the flu I was relieved. My lack of headaches and muscle aches also gave us hope. We were blindsided again when a nurse walked in and informed us rather bluntly that, again, surgery was unsuccessful. It wasn’t my tears, but rather my mom’s that gave me a sense of hopelessness. I sank into a depression for a couple weeks, only eating and getting out of my hospital bed because my mom asked me to.

Testing was done on the tumor and pancreatic tissue that was removed during surgery and they discovered that the tumor that was removed during surgery had created a network of microscopic tumorlets throughout the remainder of my pancreas. These microscopic tumorlets were still active, causing the unsuccessful surgery. In addition to the pathology report, I also got results from genetic testing. (In 90% of cases, PNETs are found in adults over the age of 40; the fact that I was 11 at the time of diagnosis was a red flag.) I was officially diagnosed with a genetic abnormality called multiple endocrine neoplasia, type 1 (MEN1). This meant that they found an abnormality in my tumor-suppressing gene, resulting in the multiple tumors throughout my body.

The summer of 2010 was the worst time period of my life. I had complications from the surgery on my pancreas, causing a cyst to form. It took doctors three tries to drain it, but not until after it had pressed on my stomach and my spine, making it very difficult to eat or sleep. I was living in pain. Every day was a blur and though I’ve forgotten most of that summer, I do remember crying in pain, seeing the bulge in my side from the cyst, and having three doctors appointments back-to-back on a particularly hard day. Unbeknownst to me, the doctors had told my parents that I wouldn’t live longer than six months. The months of pain were my parents attempt to save my life as we tried anything and everything to stop those tumors.

In September of 2010 I had a follow-up appointment at the NIH including a meeting where I surprised the doctors with the simple fact that I was alive. After I had gone back to my hospital room my doctor came back in and told me that surgery was scheduled for the next day. I absolutely refused and said that while I was open to surgery it was going to have to wait longer than twelve hours. Only after the declaration that I wasn’t going to make it without the surgery did I agree. The next day I had a double adrenalectomy. My tumors had been telling my adrenal glands to produce cortisol, and in theory removing my adrenal glands would finally get rid of the Cushing’s syndrome. I woke up from surgery feeling awful. My head hurt, I ached, and I felt gross enough that I almost forgot that feeling ill was a good sign. Even then I didn’t want to get my hopes up because I knew what it felt like to go from the highest of highs to the lowest of lows with just a few words. I will never forget what it felt like to see my doctor walk in my room, showing his students that my cheeks were no longer flushed, I was sitting up straight, and my eyes were clear. It wasn’t until I saw how happy he was that I allowed myself to hope. And when the news finally came that yes, surgery was successful and I no longer had Cushing’s syndrome, the celebration in my heart never really went away.

After my body had started recovering and I was feeling better physically, I started to crash mentally and emotionally. All those years of fighting for my life had taken a toll on my emotions but I hadn’t taken time to acknowledge it because my body was so broken. Physically I was better than I had been in five years but mentally I was dying. I am the only person ever documented with these specific diseases showing up in that order, and what good could come of that? Thoughts of inadequacy filled me, thoughts that I was a mistake, thoughts that surely God didn’t love me because if He did I would have been perfect. Instead He, on purpose, programmed each and every one of my cells to fight against my body, working to kill me. No, God didn’t love me. He hated me.

After a few months of recovery my body was almost back to normal except for some upper back pain. After trying a couple different things with no results, I had x-rays and was diagnosed with compression fractures in my back. The Cushing’s had weakened my bones and muscles so much that I was no longer able to hold up my spine. The vertebrae pressed against each other so hard that three of them cracked. I was put in a back brace, assigned physical therapy, and put on pain medication. “Only take this medication when you are truly in physical pain.” I was told. “They are easy to get addicted to.” Who were they kidding? I knew better than to get addicted to pain meds. Who were they anyway, warning a twelve-year-old about prescription drug abuse? So I was put on the pain meds.

I was very good about only taking the pain meds when the pain got bad enough. Sometimes I would take it before my physical therapy, knowing that therapy would hurt. But I was determined that the pills would not get the best of me. It didn’t take me long, though, to realize that after I had taken a pill, my brain was quiet. I no longer felt like it was me against the world. I no longer felt like I could never be enough for anybody. I no longer felt like God hated me. And just like that I was addicted to pain pills.

For the first time in four years I was happy. For the first time I four years I could be normal, I could play, I could be a kid. For the first time in four years I was okay. But only because I was taking pain pills more often and in higher doses than I should have. It was all artificial. And the thing about being artificial is that eventually it will catch up to you. And eventually the pills stopped working.

Frustrated with the lack of relief I was getting, yet deciding that nobody would know my secret, I quit the pills. The next three days were the hardest of my life and more than once I was frightened for my life. The substance that my body had started to rely on was no longer there, and my body craved it. On those sleepless, tear-filled nights it wasn’t the hope of redemption that kept me going, but rather the determination that nobody was ever going to know about my addiction.

After my body had detoxed itself I went through the motions of being okay. On the outside everybody thought I was such a brave girl. On the inside I hated to go out in public because I didn’t look like a part of my family anymore. On the outside everybody was glad I didn’t let my past ruin me because I was still so happy. On the inside I was sure that God didn’t love me. These thoughts plagued me for the next four and a half years, but I pushed them aside and pretended all was well. Because what kind of Christian believes that God doesn’t love them? What kind of Christian hates her past so much that she never wanted to talk about it to anybody, ever? And what kind of Christian gets addicted to pain meds? Me, that’s who. So I never told anybody of my secret struggles.

In May of 2016 I went on my senior trip to a Christian camp in North Carolina. One night somebody spoke on the fact that each person is perfect. Not inside, not their soul, but their body. Every person was hand-sculpted by the Creator of all things, and He never makes mistakes. Every fiber of our being was put in place by the all-powerful, yet meek and humble hand of God. He made us perfect. And I wanted to believe that. I wanted to have something to hold on to. A hope that maybe something good could happen. But I didn’t. There was no part of my being that believed that I was made with a genetic abnormality on purpose, by a loving God. And there was no part of my being that believed that God would wreck me, break me so badly, and push me to the brink of death because He loved me.

When I got back from my trip I began studying the scripture, trying to figure out what I actually believed about myself and my God. And after a few weeks of study God showed me that I was going to have to trust Him every day. Every day began with a new decision to trust Him and to believe that that day could be good. Because maybe He did love me. And that first glimmer of hope in my heart pushed me to continue daily trusting that God had a purpose even if I didn’t know what it was.

While continuing on my Bible study, one morning I came across Jeremiah 31:3. And with one simple verse my life changed. “I have loved thee with an everlasting love.” I knew that God loved me enough to die on the cross to take away my sins. But I had been limiting His love to that moment. According to this verse, the fact that He did love me at the cross meant that He loves me now. And the fact that He loves me now means that He will love me forever. And the fact that He will love me forever means that He also loved me when He was creating me. When He was knitting me together in my mother’s womb. When He decided that He, on purpose, was going to shift my DNA in a way that no man could, because He is God. Because He is good. And because He loved me. So I gave Him my past.

For two and a half years I thought that would be the end of my story. Giving God what I was holding onto the tightest. I served for a summer at a camp where I told 131 teens my story. I told them that God’s love is infinite and unchangeable. I told them that there is hope, and that they can choose to trust. And for the first time I saw good come out of my past.

Then after I came home circumstances wavered my trust again. In the space of two days I read of three high-profile figures dying from a pNET, the same cancer that I had been fighting for eleven years. And all of a sudden the future didn’t seem so bright and certain, and it was hard to see a purpose and a plan and the love of God. Because I knew that just as easily as it was them, it could have been me who died. And I was faced with the reality that this cancer could kill me.

So I freaked out. My poor friend had to put up with me asking her why this has to happen to me. Telling her that after a summer of seeing God work miracles from my story, I wasn’t sure that His plan was good anymore. And only after understanding that I had given God only a small part of my story did I truly heal. Because I was willing to give Him my past, and I had, and I had let him use it for His purpose. But I was holding on to my future.

I had to accept the fact that I can’t control what happens. I can’t control the fact that God chose this life for me. I can’t control what happens in five or ten years. But I can control my attitude about it. And after giving God my future, and all of my worst fears, and certain aspects of my cancer that scare me to death, I have peace. Because I know I’m fragile. I know that that I have stumbled and fallen to depths even I couldn’t imagine. But I also know that I am forgiven. I know that there is redemption waiting for the sinner that repents. And I know that the God who controls all of the universe is holding me in the palms of His hands. And so I have hope. And so I keep on living.

“If the stars were made to worship so will I. ”