I was being prepared for this trial in the years before by keeping records, teaching seminary and learning to listen and follow promptings from the Holy Ghost. My prayers had changed from routine to asking for specifics of things that I needed. I was beginning to draw closer to my Savior.
It was summer and I had finished my second year of teaching seminary. I had previously been the stake historian so I knew our stake presidency and worked with them for seminary. The stake president’s wife, Kally Foote, was one of my visiting teachers. My family was all back in Utah and Idaho. We had lived in three different wards, so we had friends all over Rochester. I met my younger children’s school counselor the year before and she had shared with me that she was a cancer survivor. I had 4 children–a freshman at BYU, a high school senior, an eighth grader and a sixth grader. I was just doing our regular things that summer, planning our trip to Utah, running kids here and there, enjoying our normal activities. In June, my husband had gone to a scout camp out and I remember running a fever and feeling lousy. My mom was visiting and she took me to urgent care and I learned I had a bad UTI. The cure: take antibiotics, feel better, and return to life as I knew it.
Then in early August, just as our family headed out to BYU to take our oldest there, I started experiencing the same symptoms and decided to go to the doctor before we left. I had a second UTI. More medicine, and it was cured. Then in September, I decided I needed to have a physical because there was a pain in my back that wouldn’t go away and I felt a lump in my abdomen. The doctor did all the routine tests and asked if there was anything else. I told her about the lump, and she felt it. She explained that it shouldn’t be there and we needed to do some imaging to see what it was. The next 6 weeks to 2 months were filled with doctor appointments and tests and needle sticks and drinking vile preparations for imaging.
There was never a definitive answer that the doctors at Olmsted Medical Clinic could find so they referred me to the Mayo Clinic. Once again I was imaged as they tried to figure out everything. I was sent to different departments as they tried to figure out what to do. Our previous bishop, Mike Haddock, worked at the Mayo Clinic and we asked him for his help and he followed my case in the background.
The whirlwind of testing was always punctuated with not getting a definitive answer. Our stake presidency at the time, President Robert Foote, and his counselors, Brian Cragun and Michael Haddock, all played a role in getting that answer. President Foote and President Haddock both worked in head, neck and throat cancers at the Mayo Clinic. President Haddock had previously been my bishop. I remember calling my visiting teacher, Sister Foote, with the latest inconclusive test results to find out what was really happening. She called her husband at the airport and even talked with President Haddock and all of a sudden I was scheduled for a biopsy at the Mayo Clinic. I was diagnosed on November 5 of 2012 with neuroblastoma, a pediatric cancer. President Haddock went further and helped find the doctor who would be able to help me. Familial Pediatric Neuroblastoma was her specialty and I was a match for her interests. One of her colleagues worked at Children’s Hospital of Philadelphia and this was her area of expertise and study. I was in very good hands.
The diagnosis was the hardest thing to hear from the doctor. I went into the bathroom and cried because I knew that my life would change dramatically. I was looking at chemotherapy, radiation–the whole works. It was hard because my doctor wanted me to go to Philadelphia and meet her colleague. That was the last place I wanted to go. But I decided to be tested to see if my neuroblastoma was the same genetically as my nephew’s. And then we went to Philadelphia to learn about a different path of treatment with no conventional chemotherapy, no radiation and with a little bit better outlook. We chose to do it.
Because there were so few adults (less than 80) with neuroblastoma that ran in their family and were genetic and had an ALK mutation, I became an experiment of one. The doctors started with a target dose in mind to reach, and I began bi-weekly dose increases of my oral chemotherapy drug. The goal was to get to the target so long as my body could handle it. Scans three months in the future would tell us if it was working. I never reached the targeted dose. My neutrophils dropped so low that I had to wait until they returned to normal. My immune system was weakened and I stayed home to avoid becoming sick. In fact, the only times I did go out was to see the doctor.
As I reflect back, there were so many sisters who helped us with service. They cleaned house, they drove me to so many medical appointments for labs and scans so that my husband could continue with work. They brought us meals. Our home teachers were always available for priesthood blessings. I had a lot of blessings and a lot of fasting from our ward. My one regret is that I never asked my bishop for a blessing but we tried to spread those blessings around.
I would walk the streets near our home, trying to understand the big picture: how my life would change from what I had known for 44 years. I felt the Holy Ghost near and received promptings that all would be well. I wanted my mother there and it was difficult not having my own family nearby, but they supported me as best they could with their many prayers and fasting from afar.
I think it helped me that I was teaching seminary. We were into the second month of seminary when I had tests and they had subs and I would go back and teach and then tests, and subs until they called a permanent teacher. They wanted to release me, but I wrote a letter to the stake presidency saying that we wanted the youth to see faith in action. Well, I needed their faith and it would be a learning experience for them.
I continued teaching seminary when I could. I remember the day we gathered three classes of students and talked to them about hope and my diagnosis. I could joke that I might not have to shave my legs. As the students exited the room, I knew by the end of the day many would know my diagnosis. But I held back details, and still do. I wanted them to have hope and I needed hope.
My little seminary class became my prayer warriors. They are so dear to my heart. The call would go out that my counts had dropped, the prayers started, and the counts went up every time. When I was scheduled to go to youth conference and talk about grace, I got really sick and didn’t know if I would be well enough to go. I think the leaders must have prayed extra hard because I was able to go and we talked about grace. It was something I had studied on my own. I had learned that it was the enabling power of God given to us through the atonement that could give us extra strength when needed.
Upon reflection, each time I was asked to speak at a youth conference or standards night, I was sick beforehand. I called the stake youth leaders to say I was not feeling well and if they wanted me, they better pray. I was videotaped for La Crosse Ward and spoke in Rochester on standards night and here is part of the talk:
“Because I am being treated for cancer right now, it is on my mind a lot. There are times when life just seems scary—waiting for a diagnosis, waiting for scans the first time and every time after that, how long will I have to be in treatment—all these unknown things. But the constant in my life has been having the Holy Ghost with me. It has comforted me, strengthened me, and blessed me. The Holy Ghost can be with you. It can be with you at those times when life is scary and you are not sure what to do, when you feel alone and that no one could possibly understand what you are going through, when life at home is difficult but also in the good times when life is great and everything is fine. I sincerely think that we are much more in tune to the spirit though when we are in a position to need to draw on its strength. Why do I share this with you? One of the blessings of following For The Strength of Youth is to have the Holy Ghost with you. Listening to the Holy Ghost is a skill we have to develop. We have to be doing what is right to have the Holy Ghost with us, but we also have to be in tune. Being in tune requires us to be listening and paying attention to be receptive to the promptings and whisperings of the Spirit.
Also, we know that the Holy Ghost can teach us things to do, warn us of danger, bring peace to us, etc. But if we aren’t doing the things the Lord wants us to do, we won’t have the Spirit to bless us. I have found the days I haven’t felt the Spirit as strongly are a little rougher. But it isn’t the Lord who moved away from me. It is I. A little saying I heard once: ‘If you aren’t as close to the Lord today as you were yesterday, who moved?’ I have to start making those little corrections in my life [aka repentance] to bring the spirit in more abundantly. I am not a perfect person, just someone who is striving to do better.”
Today (2020), 7 years and 3 months after diagnosis, I have been on three different drugs, and still face challenges. I don’t know how long I can stay on this drug before my cancer cells become resistant to it. I will always have to take some type of chemotherapy. There is no finish date for taking chemotherapy. There are times when I am in need of prayers. There are still times I cry out, “I can’t take this pain or side effect another day. Please give me a reprieve.”
Then I read Alma 7:11-13:
“11 And he shall go forth, suffering pains and aafflictions and btemptations of every kind; and this that the word might be fulfilled which saith he will ctake upon him the pains and the sicknesses of his people.
12 And he will take upon him adeath, that he may bloose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to csuccor his people according to their infirmities.
13 Now the Spirit aknoweth all things; nevertheless the Son of God suffereth according to the bflesh that he might ctake upon him the sins of his people, that he might blot out their transgressions according to the power of his deliverance; and now behold, this is the testimony which is in me.”
That is a very real scripture to me. I have been succored. I know that Christ knows what it is like to have cancer because I was given the answer to that very question. I know that Heavenly Father is listening still. He gives me the answers when it is the right time. I still have to walk by faith that things will work according to His plan, and I still have to place my trust in Him. I know that my Savior has walked beside me; I have felt the comfort of the Holy Ghost when life has not turned out how I expected. I feel the peace that the gospel and Jesus Christ bring to my life on a daily basis. I still hope to have enough faith that I can touch the Master’s robe and be healed.