Campaign Story

In 2014 at age 26, I was diagnosed with a rare genetic disorder called Multiple Endocrine Neoplasia Type 1 (or MEN-1) that affects approximately 1 in 30,000 people. This disease causes tumors to grow in the endocrine system, consisting primarily of the pituitary gland, the parathryoids, and the pancreas. Three weeks after that diagnosis, my pancreas tumor biopsy came back malignant, and I was then diagnosed with Pancreatic Neuroendocrine Cancer. To put a face to my rare cancer, it is the same diagnosis that took Steve Jobs and Patrick Swayze.

My husband Tyler has done 15 years in Special Operations. He has done 6 deployments so far and he plans on being a “career guy”, retiring after 20+ years.

Fate brought us together in 2012 and we vowed to be there for each other in sickness and in health, through this life and next. Little did we know how quickly that would be tested. Less than 6 months after we said “I do”, I found out about this genetic disorder when I was diagnosed with Pancreatic tumors, a Pituitary tumor in my head, and Parathryoid tumors. The most difficult part though was facing this all on my own. During my diagnosis, Tyler was on a deployment in the Middle East, my family was back in Indiana, and his family was in upstate New York. Thankfully, my mom left her job to fly out to San Diego to be there for me for the scans and biopsies. She was by my side holding my hand when we were told I had cancer. I don’t know how I would have made it through that time without her support.

The doctors relentlessly insisted that the sooner I had the malignant tumors removed from the pancreas, the better chance I would have before it spread to the adjacent organs. I learned I would need to have a surgical procedure called a Whipple; a complex operation to remove the head of the pancreas, duodenum, gallbladder, bile duct, and to then reconnect the remaining organs for digestion. We barely got Tyler out of the Middle East 2 weeks “early” from the end of deployment, and he flew straight into Boston to meet me. Because time was of the essence, I found myself flying across the country to a hospital and a city I had never been to, to receive a lifesaving surgery. He didn’t get his “detox” down time after deployment. Instead he returned to the United States fighting a whole new war on cancer. He explains how that time in Boston and the months to follow were “hands down more stressful even than his deployment.” It was a traumatic time, but we didn’t have a choice. I needed the surgery to live.

That year to follow would be our hardest. I would lose 30lb and learn to function with a 5inch abdominal incision. We would cancel our wedding celebration we had planned for after deployment prior to the diagnosis. I would have a 2nd major surgery in 2015 (total parathyroidectomy), the month before our 2-year marriage anniversary. 6 months later, I would have a 3rd surgery while he was on his 3rd deployment in the Middle East again.

My diagnosis in 2014 would begin the next 5 yrs of pain & grief until my health slowly returned. From 2019-2022 we finally got a breather. Those 3 yrs of good health have NEVER been taken for granted.

And then.. Life threw us a curveball. It stole the air from my lungs. In 2022, my routine scans showed new tumors in the remaining half of my pancreas. The Pancreatic NET Cancer had returned. And somehow I was going thru this alone again on a deployment. The grief was overwhelming & I felt like I couldn’t breathe navigating this for a second time. Tyler rushed home from deployment and we dropped everything to go to Mayo Clinic.

The Total Pancreatectomy + Splenectomy at Mayo Clinic by the infamous Dr. Mark Truty in Sept 2022 went as planned. I no longer have my entire pancreas, spleen, gallbladder, duodenum, or bile duct. My stomach now connects directly to my small intestine & I’ll forever need to take pancreatic enzymes anytime I eat. I’m a special kind of diabetic now. Some fellow no-pancreas warriors call it Type3c. Mayo calls it “Surgically Induced Diabetes”.

Sadly, I am no longer qualified to carry a child now, and I genetically carry my cancer with a 50% chance of passing it on. Hence, our IVF journey…

I was labeled as high-risk pregnancy at 26 years old ever since I had the Whipple surgery in 2014. While I was still recovering from surgery, I met with different fertility specialists and geneticists about eradicating my genetic disease from my future blood line. In the same month that I was diagnosed with Pancreatic Neuroendocrine Cancer, I was also diagnosed with Multiple Endocrine Neoplasia Type 1 (or MEN-1).

The fertility appointments were extremely emotional in my 20s. So bad, that after the first dozen, I went a good 4 years without a single fertility appointment. I had to come to term: on my own that I was taken away the ability to have a normal child naturally. There are dozens of examples of personal grief that go into that single statement alone. If this were a book, which it may seem like one shortly, I would dedicate a Chapter on the emotional toll and different grief examples that take a bit of your soul from you. In summary, I realized I would not be able to experience the joy and excitement like others would. It became very clear that my health and this heavy multi-diagnosis news, was taking a toll on both of us.
I painstakingly stopped the fertility appts, deep dove into therapy, and focused on our marriage. I learned how to become the best version of myself in honor of our marriage, and refused to let my trauma drown me. If the cancer was to kill me, I would at least become a better wife and human first. There is therapeutic beauty within that happens when one focuses on loving yourself again.

Years later, the once angry, nagging voice in my head, soon turned into a comforting, coaxing, spiritual breeze that seemed to whisper “do not give up hope” when I was in my most quiet corners of the world. In nature, if you listen close enough, the spirit will reach your soul.
That voice you hear may actually be your own.
The whispers became stronger, and soon, the hope was overriding my fear. In 2021, I picked up the phone again, and thru therapeutic tears, made those appointments once more.
For 8 months, we checked off all the boxes again- from Genetics to Fetal Assessment Unit, and finally Fertility: always discussing my high-risk situation with half a pancreas. I passed my 3-year cancer-free scan with flying colors at the end of 2021, and I finally got the green light to start fertility shots. I was elated, but Tyler was very hesitant in the appointments. I will always wonder if he subconsciously knew all along what was to come.
By early 2022, Tyler had frozen his sperm in preparation for deployment, and we signed our final IVF paperwork together. We agreed that the plan was for me to do an egg retrieval and make our embryos on that deployment, test them for my genetic disease, and then implant a healthy embryo back into me to carry upon his return home. Everything was happening to plan! Tyler deployed and I continued the appointments preparing for my egg retrieval.

By April 2022, I reluctantly wired the remaining $10k to move forward with fertility shots for my egg retrieval. There was no going back now!
And then, my fertility doc threw a wrench in the plan, and said she changed her mind about me not doing scans. She was now requiring them before I start shots. I was, to put it mildly, pissed. I was between my one-year scans and had gotten a clear scan under 6 months ago. By pausing things now, I knew it would set my IVF shots back at least two months in order to get a MRI scheduled.
“I’m fine. I don’t need a scan,” I told her.
She cringed, apologized, and explained she wouldn’t feel comfortable signing off on me starting shots until I got an abdominal MRI. “These shots will rapidly multiply any cancer you have,” she carefully said. I scoffed, “Well I don’t, so it’s unnecessary. I feel better than I have in years.” She softly smiled, “Then this will be easy.” Fine, I thought. Let’s just knock out another scan, and then get these shots going. I clearly remember not thanking her on my way out. That scan would save my life.

The scan I insisted not to do, showed that my
Neuroendocrine Cancer had returned in the remaining half of my pancreas. Tyler rushed home from deployment to help get a plan in order, and actually landed the night before our last fertility appointment we would have in 2022. We silently walked into her office together. By then, I already had the pathology results and two Tumor Boards at different hospitals lined up. The seriousness of the battle ahead started to sink in. I sat in her office in a fog, barely hearing what she was saying. Cue Charlie Brown’s teacher. I didn’t say a word the entire appointment, tears silently and consistently streaming down my face, while she and Tyler talked. To this day I have no idea what was said. I know she kept looking over at me as I stared at the paperclips on her desk, counting them, thinking this was all just a dream that I would wake up from. Their conversation must have finished, because they both stood up, and Tyler gently lifted me from my seat with his hand under my arm. She rounded her desk & grabbed me in a tight hug as I heard her soft sobs as she clearly tried to control her breathing. I was numb. We were so close. How could this be happening? It made no sense to me. In all my years fighting cancer, this was the only time l ever felt how unfair life was. I cried for days.

A couple months after we got home from my pancreas removal surgery at Mayo Clinic, I made an appointment with that same fertility doctor. I think we both knew why I was there. I walked into her office and we both immediately cried, hugged, and laughed together. We sat together for over an hour, holding hands across her desk, as I thanked her for sticking with her gut & saving my life. She said she was moving across the country, & we both cried to see each other go. I will carry her in my heart for the rest of my life. When I walked out that office, I believed I was closing the chapter on becoming a mother. “Maybe this was God’s will for me after all.”

Six months went by and I became stronger in my recovery. And then, that box of hope that I had sealed shut and thrown off the bridge came bursting back through the door without warning. I woke up one day to an email from my very first fertility doctor from his new practice. He had felt connected to Tyler and I all those years ago, and he and his wife had recently brought up our rare situation. He was checking in on where we were at in life. I felt this new, strange wave of peace rush over me. I felt that if we started this process over again for the third time then I would finally be able to find closure & end this chapter. I just never felt like I ever had any confirmation that we were done. I always felt I needed to try until my body or God showed me it was time. So, I emailed him back, this time with no tears and much more peace, that we would love to meet again.
And so, truly by the Grace of God, here we are. Over the last year of approvals from Mayo Clinic, scans and countless blood work up, we have already gone thru 2 rounds of IVF with no success of a PGT normal embryo. We are gearing up for our 3rd IVF round end of July.

But through all of the cancer fighting bills and IVF bills, we are now desperate for help. We don’t want to go bankrupt by trying to simply have a healthy child. The $51k is for 3 rounds of IVF and PGT-A/M embryo testing through Igenomix. This cost does not include the additional $80k we will need to pay for a surrogate. Our road to get here has been long, exhausting and expensive, and we humbly ask for help.

We know in our hearts that this future baby of ours is our reward for keeping the faith and holding on to each other through the storm. We are truly blessed through it all and have no doubt that the best is yet to come.

Thank you from the bottom of our hearts for your time and consideration. For we know just how precious time is.
Love, Alex and Tyler