Lupus and Love


Why not make it a love story?

“Fill your mind with truth, fill your life with service and fill your heart with love” ~Thomas S. Monson.

Once upon a time there was a boy and a girl. The boy in this story is my husband, Rob (you’ll hear me call him Robby – that’s what I always call him) and the girl is me. Robby was best friends with my brother in Jr. High, but during Jr. High he was two grades older than me, and boys and girls had cooties so neither of us paid any attention to each other. High school quickly came along with sports and dating and fun.

The summer after my freshman year of high school at age 15, my brother and I happened to be driving through the town our high school was in (we lived 30 miles away and didn’t see classmates most of the summer) and pulled up to some friends of ours on the road. They were sitting in a tall red pickup. My brother’s friend got out of the pickup and came to talk to him, so I hopped out of the car and strolled back to talk to the boy still waiting in the pickup, Robby. I jumped up into the pickup and began chatting with him and later he said that’s when I caught his eye. He was going to be a senior so I had no expectations, just a friendly chat.


The school year began and during basketball tryouts, my bones hurt so bad that I was not able to complete the try-out. I remember the coach telling me I wasn’t tough enough. My mom began noticing certain things as well. I had a tennis ball size lump on the side of my neck and when I would stand up from sitting, my hips were so stiff that I couldn’t straighten out. I thought nothing was wrong and that I was just getting older.

My mom took me to a local family doctor who promptly told her I was faking it because I did not want to play sports. After leaving his office, she told me “He doesn’t know your personality very well, does he?” So a few doctors later we ended up in Salt Lake City. We walked into the waiting room and women did not have hair and were hooked to IVs. My dad teared up a bit and hugged me.  I remember the surgeon so well – he was older and had been a cheerleader when he was young. We connected. He suggested a biopsy to test for lymphoma, so we did it. No lymphoma in my neck, so we biopsied another lymph node under my armpit. (Side Note: God works in mysterious ways – as they wheeled me into surgery, the surgeon noticed an aneurism on the side of my dad’s head that was about to burst and performed surgery on him the following day.) Results from my biopsies were negative and he referred us to an internal medicine rheumatologist at the University of Utah.


During the time between procedures and doctors appointments to when I scheduled my appointment at UofU, I turned 16 and began dating. On my 16th birthday, a Cummins boy took me out, but it was not Robby, it was his cousin. I had a rule for myself to double date and went on a few double dates with Robby – except he was not my date. We happened to be in an accounting class together with two other students (small school) and began spending much time together working on problems and talking. Our accounting teacher still takes credit for our marriage. He began offering me rides to the school from early morning seminary and we began going on dates together, still with other couples. In fact one time he called to ask me out and I asked if he had a couple to go with us and he said no, so I said no. I liked him a lot but was not taking him seriously because he was leaving high school and knew there were plenty of college girls to catch his eye.

Then one day, while driving to the school from seminary, he gave me chocolate covered strawberries and that was a kicker. I love chocolate covered strawberries and thought he was so sweet. In April, we went to his senior prom together and enjoyed being around each other so much.

Senior Prom

The next month I saw the rheumatologist at U of U and he immediately diagnosed me with Systemic Lupus Erythematosus and said my white blood count was killing my kidneys basically. So right then and there, he gave me the option of dialysis or chemo. I asked many questions and my parents were great to let me make the choice. After understanding that dialysis would take a lot of time and chemo wouldn’t, chemo was my choice. I was too busy to worry about that stuff at that age. ;-). I called Robby from the hospital letting him know that I was beginning chemotherapy fully expecting not to have a senior “boyfriend” anymore and he just softly asked if I was ok. I really, really like his personality. He is so calm and stable. For months when we began dating I tried to find his hidden agenda, his secrets and I came to the conclusion that there was no hidden agenda – he was just HIM. I loved it, it was so refreshing.

The treatments continued and I began to have puffy cheeks from medications, loss of some hair and tiredness. This boy, my Robby was a rock for me, telling me I was beautiful and that he couldn’t tell a difference. He made my life normal and happy and fun and I began taking him seriously. He left for college and I kept some walls up to protect myself. But that first weekend after he left, he came knocking at my door to take me out, then the next weekend and the next. He would drive from Logan, UT to Burley, ID for his high school puffy cheeked, chemo-taking girl to take me out. Six months of chemo went by fast and my body recovered quickly and the Lupus went into remission. There were a few weekends of bad weather, so I didn’t see Robby every week, but it was pretty close.

Fall Harvest

I took a semester of college between my sophomore and junior year of high school and was going to graduate a year early. I graduated and moved to Twin Falls to attend college. Robby worked on his family farm for the summer and decided to continue working that fall for harvest and to earn money. By December, we both were stable on our own and it was getting really hard to stay away from each other. So we talked about getting married and moving into his house and picked out a ring. December 23rd we became engaged and since school was starting again and I didn’t want to pay rent (also his family was going to Disney World and I was invited – not need for separate rooms) we got married on January 15th. Yes, it was quick, but when you know, you know. Before our nuptials, I had a very serious conversation with Robby letting him know that my health condition was permanent. There was and is no cure yet for Lupus, just treatment and prevention of flares. This is a lifetime event and I was ok if he bailed (even though it would have broken my heart). My doctors had even told me they didn’t know if I’d be able to have children!

He looked at me very tenderly and just said, “You’re the one.”


Yay! We got married, my support by my side and three months passed. I left on a flight to California for an NCA camp I was to attend as a professional cheerleader and while I was there began swelling. My ankles swelled as well as my body. I thought in my naiveness that as a newlywed I was pregnant! However, by the time I stepped off the plane back in Idaho, it was very clear that something was wrong. My body swelled so much that I gained 40 pounds of water weight in 5 weeks and all of the stretch-marks I have on my body (top of my feet and legs) are from that fluid retention. Lupus had gotten to my kidneys again and this time, no joint pain or soreness, just acute failure. Chemo began again immediately and sure enough my body responded perfectly. I lost more hair this time and I cut it short. It came back in really curly and is still curly today. Six months of treatments went by and I was good to go again. Marriage could continue normally. 🙂

However shortly – too shortly – after my treatments I became pregnant. Due to my health history I was high risk and monitored often. Our first baby’s story has been written and can be found here. During Isabelle’s life I was blessed with health and strength. The Lord was watching over her and me. Even though I was not sleeping well and was taking care of my “heart baby”, my Lupus remained calm. Robby was the sweetest with Isabelle, so tender and loving and it broke both of our hearts deeply when she passed away.


She changed our lives. The day we were sealed to her in the temple was two weeks before my sweet second child was born, Valette. Valette and our next child, Jenny were born within a few years of Isabelle’s passing. Everyone has a different plan that Heavenly Father has given us. Mine and Robby’s plans were to have these sweet children and gain a testimony of God through the process. I only had those three years of health to have my three babies and am so, so grateful for the opportunity and timing.

Our little family moved forward and Robby and I farmed for seven years. However there came a point when Valette and Jenny were 2 and 3 that we decided we needed to finish our education and move to Boise. So we took a leap together and moved to Boise. We have noticed thoughout the years that moving is not great for my health and I flared. This time is was debilitating joint pain. I remember trying to start my car and I literally could not do it. I had to have Robby come start it for me. Another hurdle to jump, however this time a new medication was out that took the place of chemo and I only had to begin taking pills rather than heavy IV treatments. My body again rejuvenated after killing so many white blood cells and life continued. Robby worked very hard to help with the girls and cook meals and provide for our family during this time and we became even closer as open communication was a necessity. I only had to be near him to feel better and then when I would touch him, even on the arm, I felt so much better.

I was never well enough after that to be considered in remission, a battle for the ages raging within my body often and constant attention was to be given. However during this I managed to finish my degree in Business and enjoy every day life. I served in my church and thanked God everyday for the ability to get up every morning. Years passed and I finished school, Robby took a job in Utah and we were set to move there. He moved down three months before the girls and I were supposed to because I was finishing up my degree. Robby’s job fell through in Utah after a few months when a large client dropped and he moved back to Boise. Then I started working full-time as an Operations Coordinator for a video-relay service company. Apparently I am unable to live without Robby for the amount of time he was gone because I began to flare, quickly! I called my rheumatologist office in Boise one day and said I guess I needed to see him and they happened to have a cancellation. I went in and my kidneys were at failure point again, this was the 4th failure. I just said non-chilantly “Throw me on some chemo and let’s get this thing done.”

However, I guess there are only a certain amount of times your body is able to handle chemo and mine was up. Yikes! So arrangements were made with nephrologists (finally). I was referred to a specific nephrologist, however his office was further away than one of his partners and so I went with a different one. Huge mistake! I kept getting worse and worse. My head began looking like cauliflower, my blood pressure was high and my skin was chalk white and I eventually was found one day in the stall of the bathroom at work curled up in a ball when my boss finally sent me home. My chalky white skin was because I was running out of blood – where was it going? My rheumatologist begged my nephrologist to get me certain shots to boost the hormone that stimulates red-blood cell growth in the kidneys, but the nephrologist was delayed, not knowing what he should do and not willing to find out.

One night I physically could not get out of bed and Robby called the nephrologist who frankly said “I don’t care! If you think it’s a big deal, then take her to the emergency room.” And Robby did. I was so low on blood that they had to keep me all weekend to fill me up. During this weekend Robby was praying for me and received a prompting that if I continued working full-time I would die. So we made arrangements – we had just purchased our first home – and figured I could work about 2 more months and then we’d be able to get everything in order for me to not work. Well, my body did not like that thought and one night that week I went to bed and then didn’t wake up for three days.


Robby said, as I laid in bed, I was moving a lot, so he rolled over to see why and I was seizuring. He jumped up and grabbed me and headed to the hospital. He passed three hospitals on the way to downtown Boise, but he knew he needed to take me there. He said I was coherent when we got there, but yelling at everyone and hysteric. They sedated me and strapped me down to a bed, taking me to critical care. The nephrologist that happened to be on call at that hospital at that time was the original nephrologist I was supposed to see whose office was further away and he was amazing! He saved me. Robby loved him and talked with him often, telling him everything that had happened.

I remember waking up when the intubation tube was drawn out of my throat. My first question was, “Where am I?” noticing my words slurred when I spoke. My second question, hearing my voice was “Do I have brain damage?” I was reassured that I didn’t but that the neurologist wanted to study my brain more because it was so “interesting.” However they didn’t let him since everything was ok. I was in and out of coherency the next few days and remember feeling so excited because the toothbrush they used was awesome! It was on a tube and sucked while they brushed! It’s the little things right? 😉 As I began becoming more and more coherent, I realized I was in bad shape.

The physicians were struggling to figure out what exactly had happened. They knew I had kidney failure and my blood pressure spiked to 220/140 causing seizures, however there was something else going on with my blood that they couldn’t pinpoint. I vividly remember three times in the CCU wondering if I was going to live through that very moment. I pleaded with the Lord letting him know that my work for him was not done on this Earth and I could do more. Daily I had dialysis transfusions to keep me alive and filter all the filth that seemed to be running through my body – it was not just filth though, it was cells, destroyed red blood cells.

Doctors across the country were recruited and I was labeled the most complicated case at the hospital at that time. It was not a compliment. Hematologists were brought in and studied my blood and it was decided I had developed Thrombotic Thrombocytopenic Purpura (TTP). I was told that fatality rate was 90% before they began practicing plasma transfusions. So I began a 25 day regimen of plasma transfusions. By day 20, the doctors were beginning to worry, not only had the northwestern United States run out of plasma, but the treatments weren’t working. The father of a hemotologist who was a retired hematologist came in and gave his wisdom, letting us know that removing my spleen may be what needs to be done.

I am not one to just start taking out organs. I prayed about it and that day my sister-in-law happened to come to visit. She had her spleen removed when she was a teen with a similar disease. I had my answer. With my tubes stuck in me everywhere and my blood running through a machine, I entered the surgery room. Within two days of taking my spleen out, my blood stabilized. It worked! My kidneys were still too far gone, but the rest of my body somewhat leveled out. After a month in the hospital, I begged to be sent home with the promise that I would get daily labs and see my new nephrologist often as well as the hematologist.

Many miracles happened during this time. My niece had moved into our new house with us because she was going to nanny for me for the summer while I worked full-time. She took care of my children the month I was in the hospital and helped me for months after. I lost my job to the sadness of my employer and I held our health insurance. We had just moved into a new ward and a spirit listening saint offered Robby a job that had immediate health insurance benefits. He took a chance on us and we have become good friends since.

Love Story

After this experience, rehabilitation was hard. I didn’t even have enough muscle to lift my leg up one step. Robby would have to lift me up the step into our home and lift me up the stairs. He cooked meals and did laundry for months and made sure I had everything I needed. One thing I liked about it all is that he never made me feel sickly or that I was a burden and always made me feel like ME. There were many times that I felt so bad he was married to me with all this going on. I felt like “this” scar would have been a trip to the Caribbean, “this” scar would have paid for my girl’s college education. “This” scar was my husband’s new truck, “this” hospital stay was our retirement and “this” scar was a brand new dream house. Robby just kept loving me unconditionally, always making me feel priceless, and still does.

I was able to begin nightly dialysis which made me feel better and have energy during the day. I would hook up to my dialysis machine at night and it would run its 8 hour course while I slept. Then get up and start attending to my daily duties. There is a lot that goes into getting on a transplant list. You have to be worthy to get one. I progressed and was on dialysis almost a year when I received word that I was on the list! I barely received any instructions when not even two months later at 8pm at night a nurse from the University of Utah called me and asked if I could be in Salt Lake City ready for my transplant by 8 the next morning? It was a bit crazy and fast, but we did have a plan set for such an occasion and I headed down to Salt Lake City with my parents and Robby stayed with the girls. It was hard leaving that day…there is always the possibility of not returning – even though I believed I would.

Kidney Transplant

The transplant went great and then four weeks of living in Salt Lake went smoothly as I recovered. Robby and I don’t do well apart and it was sooo nice to return to Boise. Yay for a new kidney and renewed energy. Not every day is easy. I still have many limitations and my body does a great job of trying to kill itself as often as possible, but I’m so grateful for LIFE! I’m so very grateful for understanding children and for a kind and hard-working husband. The thing I am most grateful for is LOVE. Love that the Lord has for me and I for Him. Love that creates happiness in my family and love from a wonderful husband who never loses hope and through these health “tune ups”. He has always, ALWAYS been right by my side from the beginning.

Real Imprints

Story written by: Mary Cummins

This story appeared first on Real Imprints.