Our latest story... for those who may not know...

In October of 2011, my doctor discovered a large mass in my abdomen during testing for suspected kidney stones.  The tumor was approximately 15 centimeters long on the tail end of my pancreas.  Testing determined that the mass was a malignant grade 2 Neuroendocrine Tumor (NET).  Because the mass appeared to be fully contained, it was removed on January 6, 2012. 

Further follow-up CT scans in May and September indicated no signs of further disease.  Because reoccurrence rates were considered low, we decided it was time to start our family.

On January 5^th, one day before the one-year anniversary of my surgery, we were elated to find out that we were expecting.  The only thing I had ever wanted in my life was to be wife and mother.  The pregnancy had been going along smoothly with minimal pregnancy symptoms.  I was feeling great.

On May 20^th of 2013 at 23 weeks pregnant, I woke early in the morning with a horrible backache.  I decided to go into work despite the pain, but once there, I could no longer tolerate the aching.  My coworkers convinced me to call my obstetrician who advised me to go straight to the labor and delivery department.  My husband Tim met me there, and testing was started.  The baby appeared to be in no distress, but an abdominal ultrasound revealed multiple lesions on my liver.

The next week was a blur.  MRI results further confirmed what the ultrasound had already detected.  Multiple lesions in both lobes of my liver were revealed along with re-growth of the original tumor.  My parents were with my husband and I when my oncologist gave us a rather dire report.  The lesions had grown so quickly that he suspected they might have been a higher grade.  At only 23 weeks along, I could not initiate treatment without risking the pregnancy.

While my oncologist researched and collaborated with doctors at Mayo Clinic on treatment options, I had biopsies of the tissue to confirm the grade.  We were pleased to find out the lesions were again grade 2 in nature.  I started octreotide injections as initial treatment.  This drug had been deemed safe during pregnancy, and the use is to slow or stop lesion growth in the liver.  We hoped to use this drug to get me further along in my pregnancy.  I also started seeing a specialist in high-risk pregnancies to monitor pregnancy progress and to plan for an early delivery.

Over the next several weeks, we worked to arrange our affairs at home.  I had not returned to my job as a hospital speech pathologist since that day in May.  I resigned from my position in mid-July.  Tim and I made the decision to move to North Dakota to be closer to my family.  In his job with the FAA, he had to submit for a hardship transfer to the control tower at Fargo airport, a process that could have taken months to get approved.  We had to switch my insurance coverage to his plan since I was no longer working. 

The baby, our little girl, continued to grow quickly in the womb and was healthy as can be.  The goal was to at least make it to 32 weeks, if not 36 weeks if able.

Mid-July I had another MRI to use for comparison with the original MRI results.  The test had shown that the lesions had grown, so plans for an early induction were initiated. 

Arya Joyce Ekvall was welcomed into the world Friday, July 26^th at 1:23pm, weighing 5 pounds, 1 ounce and 18 inches long.  For a preemie of only 32 weeks gestation, she was remarkably healthy.  She was admitted to the NICU for three weeks.  We spent out time bouncing back and forth between the NICU, my medical appointments, and preparing at home for a move.  We finally brought her home on Sunday, August 18^th.  She has been a true angel.  She is laid back, easy going, and sweet as can be.

One week after Arya’s birth, I had additional testing that could not be completed while pregnant.  My oncologist prescribed an oral chemo regimen in addition to octreotide injections.  He also laid groundwork for transfer of care to Mayo Clinic following our move.   After much hassle getting insurance approval of treatment protocol and eventually switching carriers, I started chemo medications August 20, 2013.

Tim’s transfer with the FAA was expedited, so our official move date has been moved up to September 12^th.  We will be moving back to Fort Ransom, North Dakota where my family lives for support in caring for Arya and myself.  Our house is now on the market in Kansas City.

The past several months have been extremely hard, emotional and stressful, but from them, we also received the love of our lives Arya.  The support from our family and friends during this time has been overwhelming.  The number of people who have reached out to us, prayed with us and for us, has been truly amazing.  It is very humbling to know how many people care, and that there truly is hope in this whole situation.