There is no introduction I can give to this that even feels appropriate. Nothing I say feels I’m doing this justice.
I grew up in the same neighborhood as Jenni. We went to the same schools. Had some of the same friends. Went to the same church. Almost a year ago, Jenni’s husband passed away after a brutal battle with cancer. Twelve members of her husbands family have been diagnosed with cancer. Twelve. Her story is nothing short of incredible.
This interview is much longer than any I have done in the past. But I couldn’t leave out anything. It’s long, but my guess is you won’t be able to stop reading. And I will warn you now, you will cry. I truthfully had to stop reading a couple of times to wipe the tears streaming down my face (so be forewarned, if you’re in a public place you may want to save this to read later). And some of the photos are from Bryce’s last days and left me breathless.
But her message of hope and survival and her ability to pick up the pieces and continue really living life are messages I hope can spread far and wide. This is more raw, and real, and more vulnerable than just about anything I have ever read. I have great respect and love for the kind of person she is. Jenni is proof that life can and will go on after unimaginable grief and pain.
1. Give me a quick peek at your story.
I grew up for most of my life in Sandy, UT. I was the second of four children, two boys and two girls. I was no stranger to illness as a child. My older brother had an un-diagnosed illness from the age of 8-17 and I lived in fear every day that I would wake up and find him gone. Other than that, I had a great childhood. I had parents that would go to the ends of the earth for me. I did some gymnastics and dance growing up. I was always a practical joker and spent a lot of my time being mischievous and pulling off pranks with my friends, but never got in any “real” trouble. Ironically, I took school very seriously and never sluffed a class in my life, which y friends still give me grief about. My best friends to this day are the friends that I grew up with as a child. I went to two years of college and got to study abroad in Europe and Russia. I met Bryce the first day of my sophomore year at college. I called my mom and told her that I just met the best looking buy that ever walked the face of the earth. Her response was, “you watch, you’ll end up marrying him.” We were married nine months later. I then enrolled in and graduated from cosmetology school. Three years after we married, when I was barely 23 and had already given birth to my first child, Kade, I found out that Bryce carried a dominant genetic mutation called Li Fraumeni syndrome. There have been 12 members of Bryce’s family between the ages of 9 months and 45 years diagnosed with cancer. Nine of them have passed away (2 in a drowning accident). Carrying this mutation gives you a 90% chance of developing cancer before the age of 50 and a 50% chance before the age of 30. Fighting cancer with LFS is also more difficult as the p53 (tumor suppressor gene) is already damaged so chemo and radiation can actually add fuel to the fire. Since LFS is a dominant gene mutation, the chances of passing it on to a naturally conceived child are 50%. I had 3 more children (triplets) Davin, Creed, and Sage, through PGD invitro to prevent passing on the mutation. It took me until my oldest was four years old to find the courage to get him tested. I remember sitting in the waiting room in anticipation for his results. I was shaking uncontrollably and struggling to breathe steadily. I had my head buried in my hands and was gripping and pulling on my hair. I felt so out of control with fear and panic. I can honestly say the best moment of my life was when I finally got the news that he tested negative. In June 2013 Bryce was diagnosed with AML Leukemia. We were always faithful in doing his yearly full body and brain MRIs. We were never even told to screen for Leukemia since it was so rare for those with LFS. After an 8 month battle, which was fought almost exclusively in the hospital, Bryce passed away in February 2014.
2. Tell me about an “every day moment” you are grateful for
Watching my kids smile, laugh and enjoy their lives even after losing their dad and so many other close family members, will never get old to me. Any time I hear them laugh or see the pure joy in their expressions throughout the day, my heart swells up with gratitude that they are still able to be happy and not wallow in the heaviness of some of their realities. I remember my mind constantly going into a spinning vortex of despair when I thought about the realities of my kids possibly losing their dad, so to see their happy moments makes me extremely grateful.
3. What is one ambition you have right now
Before Bryce got sick, I had a goal to run 40 half and/or full marathons by the time I turn 40. At age 36, I’ve already hit 40. Now my goal is to run at least 50 by the time I turn 40. I wear orange shoes and an orange cancer ribbon, in honor of Bryce and leukemia awareness at every race.
4. If you could speak on anything to a large group of women, what would you talk about?
Being a mother will always be my top priority, however, I strongly encourage all women to find their own identity and get to know and understand yourself. I’ve learned that the reality of life is that we come into this world alone, and we leave this world alone. Anything can be taken away from us at any given moment. If we aren’t happy with ourselves as individuals, adapting to loss and change will be that much harder for us when it comes along… and it will come along, because it’s an inevitable part of life.
5. What does the phrase “create a good life story” mean to you?
Having watched so many people on their death beds, the term “creating a good life story” is now pretty simple to me. Sure, having goals and accomplishing them are great and necessary, but in the end that won’t be what you’re thinking about. All that will matter is whether or not you feel that your family and friends know that you loved and cherished them, that their feelings mattered to you, that your every day actions showed them consistently how much they meant to you.
6. Tell me something someone taught you that made an impact on your life
My dad let me tag along with him this past October on a humanitarian trip to Zambia. I learned more about suffering, gratitude and love watching the Zambian people over 16 days than I probably ever learned in the previous 36 years of my life. Even though before that, I tried every day to have a positive outlook about my situation, being there made me feel that I never had an reason to feel that my life was hard. I met 5 year olds who had already lost both parents to HIV or malaria and many had HIV through no fault of their own. Rarely did I meet a teenager who hadn’t lost at least one parent. Children younger than mine would pick fruit and sell it by the bagful for the equivalent of a U.S. dime and praise God when somebody would stop to make a purchase. They had to walk long distanced to fetch water from wells, and they considered themselves blessed to have access to a well. Through it all, they all still smiled, laughed, danced and praised God. I found myself feeling so ashamed at my ungratefulness toward my every day conveniences that I completely take for granted. Hearing about these things are much different that witnessing them first hand. It made my problems seem so insignificant after realizing how they paled in comparison to a lot of the world’s population. Yet, through it all, these people are still so humble and grateful for the blessings that they still have.
7. Name one event in your life that has made a significant impact on the course of your life story
When my oldest child was 7 months old, my brother in law and nephew were in an accident and drowned together at Scofield. Bryce was with them and witnessed it happen, trying his best to save them, but started blacking out himself and couldn’t keep them afloat. Bryce was rescued after Larry and Trevor had already gone under and it was too late. We lived across the street from each other at the time, we were all best friends. I honestly thought that life as we knew it would end, and that none of us would ever smile again. I had to dig deep and step outside of my own pain. I had to realize and draw upon my own inner strength. Larry had three remaining kids (one had already died of a brain tumor). He couldn’t qualify for life insurance because of his two previous bouts with cancer so their mother had to work full time, traveling an hour each way, just to get by. For the next year, I got them to school, did their laundry, did their grocery shopping, helped with homework, and tried to help fill the void the best I could. Watching and being involved with their grief process made me realized how strong the human spirit is when given no other choice. It made me realize that we can all do hard things, things that we only thought we’d have to do in nightmares, and that we can still find reasons to smile and make every day choices to focus on the positives in our lives. That event changed me more than any event in my entire life. Instead of living in constant fear of tragedy, I became empowered and knew that I could get through anything that came my way because I would have no other choice… and I could get through it being bitter and angry, or I could try to make lemonade out of lemons.
8. What is something you want to accomplish you haven’t yet?
I have never been the crafty type, but I saved most of Bryce’s clothes and I’m determined to make them into quilts for each of my children. I think it will be a great heirloom for them to have something of their dad’s that their mom made for them. I have some talented friends that will help me through the process.
9. What is the biggest lesson you have learned from the battle of cancer and death of your husband?
Unconditional love and the goodness of humanity in general. The whole experience redefined the term “For better or worse, in sickness and in health.” for me. The devastatingly handsome man I fell for was being ravished by this disease. None of that mattered. All that mattered was that we were in the fight together, until the end, whatever that may be. I witnessed the pure love of family, friends and strangers during that time. Constantly. I even watched his friends do things like lift him to the bathroom, clean up his vomit and rub the inflammation out of his swollen, cracked legs. When we found out that there was nothing else we could do and he had a week or two to live, I watched Kade pack up his stuff and move into the hospital. He told me he wouldn’t leave Bryce’s side until he took his last breath, and he didn’t. He even slept on the floor and reached up to hold Bryce’s hand during the nights and I would sleep on the other side in a chair with my hand on his chest to make sure he was still breathing. I didn’t want to miss his last breath. I didn’t want him to “die alone”. It was so touching to see how everyone that loved him would go to great lengths to ease his suffering. People also went to great lengths to ease my burdens and my children’s burdens. The outpouring of love was so overwhelming to witness. Everyone who did ANYTHING for us during that time will forever have a special place in my heart.
10. What are you most proud of?
My kids will always be what I’m most proud of, but if we are talking a personal accomplishment, it would be the races I’ve run since Bryce died. I promised him that I would show the kids that I wouldn’t give up on life. Not just on them, but on me. I decided that to keep that promise, I’d beat my personal records at both a half and full marathon in 2014. I ended up winning my age division at the Nebo Half marathon with a 1:29:07 (6:48) pace. I ran without a watch or a pace group. I ran as fast as I humanly could and when I wanted to puke or collapse, I’d tell myself, “Bryce suffered with hardly any relief for 8 solid months much worse than you are suffering now, surely I can endure an hour and a half of this torture.” It worked, and when I saw the clock at the end of the race, I burst into tears. I had beaten my old record by 5 minutes, which I didn’t think was possible for me. Six weeks later at the St. George marathon, I wanted to break my previous record of 3:30:31. I had trained for a 3:29:00 marathon at best. I decided to get with the 3:25:00 pacer and force myself to keep up. By mile 22, I desperately wanted to quit, but I kept telling myself the same thing I did during Nebo. I also had an awesome pacer who kept me motivated and believed whole heartedly that I could do it. I came in at a 3:23:47 (7:47 pace) and qualified for the Boston Marathon with 17 minutes to spare. Again, I burst into tears when I crossed the finish line, looked down at my orange shoes and the orange cancer ribbon sticker on my shorts and thanked Bryce for helping me accomplish this huge goal.
11. What is the best parenting advice/tip someone gave you?
I always remember (and chuckle at) something that my late brother in law, Ric said to me. When Kade was about 3 and the triplets were about 1, he said to me, “They sure are cute now, but kittens turn into cats. Just remember to love the cats just as much as you do the kittens.” It’s challenging as they get older and sometimes make decisions that I don’t agree with. I’m not a perfect mother by any means, but I hope my “cats” still know that I’d love them through anything and everything.
12. Tell me something you are sure of
I am sure that Bryce “won” his battle with cancer and fought with every ounce of his soul to stay in his physical body. Something that Bryce said to me during his battle with cancer will always stick with me. After enduring an excruciating bone marrow transplant and suffering more than any words in this language can adequately describe, his cancer returned on within several weeks. The doctors told us that the chances of even making it a year with a second transplant were less than 20% for the typical patient and probably far less for someone with Li-Fraumeni syndrome. Without saying it, they were basically recommending that there was no hope and that he should just save himself a whole bunch of suffering, take the morphine and throw in the towel. His response was, “I’ll put my body through hell as many times as I have to if there’s even the slightest chance that I can be here to raise my kids.” I feel like that is the greatest gift he could have left them. Even though he didn’t survive, they know without a doubt that he would have gone through any form of torture so that he could wake up to their beautiful faces every morning and be their dad. They know that he didn’t leave them by any choice of his own and that he’s still out there somewhere, loving them every day.
13. What is your favorite quote or your life motto?
There are so many quotes that I love, but if I HAVE to choose one, it would be: “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” The best people I know in life are those who have known defeat and risen up from the ashes. I don’t like the trials I’ve had to go through, nor do I want to go through any more, but I do like what I’ve learned as a result of them.
14. What is your favorite part about yourself (not a physical trait)?
Compassion. I’ve been told I’m compassionate to a fault. My dad always told me growing up that I needed to stop stressing out so much about saving the world. It is actually a weakness that I’ve had to work on, but I’m glad that I’m not the opposite. I genuinely care about others.
15. What type of photographs do you wish you had more of?
I wish I had more family pictures from when my triplets were babies. I was in survival mode for a couple of years, so I feel like I don’t have near enough photos from that time period. I also wish I had more pictures of Bryce with his brothers. Three out of the four have passed away now. When we were first married, I snapped a shot of all four of them hunting and now it’s a prized possession to the entire family. I think it’s one of only two known photos of all four of them together.
16. What is something you do to help drive away fear or anxiety?
When I’m feeling scared or anxious about something I always remind myself of a quote that I love, “I like to remind myself that my track record for getting through bad days is 100% so far and that’s pretty good.” When my anxiety used to get really bad, I’d time myself on the clock and try to not think a negative or scary thought for a full minute and build from there.
17. What is your favorite part about being a mom? Your least favorite part (just keepin it real on this question–I know you love your kids)?
I love watching them through the “stages” of growing up. I love the cute, funny way that their brains comprehend things throughout those stages. I live for some of the remarks that they make and have made it the past. It’s so precious to me! My least favorite part is the weight that I feel on my shoulders when I realize that I am soley responsible for these four little humans. That is a huge responsibility. I worry that I’ll have regrets about how I raised them, or that they’ll grow up and think I should’ve done this or that differently. I just want them to grow up to be good humans who know that I love them and that I did my best.
18. Tell me something about yourself that may surprise people
I am the least organized runner out there. I watch people charting and planning their every mile and all of their race strategies. I just tie my shoes and run out the door with my headphones. Ninety-nine percent of the time I don’t even run with a watch, I run by how I feel. When it’s race time, I find a pacer that I hope to keep up with and wing it. I am stubborn, so if I really want to keep up, I usually do. Very rarely do I ever follow a schedule and properly train, although I did for St. George last year.
19. What was the hardest part about Bryce’s battle with cancer?
Helplessly watching the physical and emotional torment he went through. I arranged a schedule with my dad and brother in law so that he rarely had to be alone at the hospital. We spent our time “loving” him. We sat with him, cried with him, laughed with him, tried to distract him. We held his bucket while he vomited and cleaned it up when he missed. We tried to warm him up when he’d shake uncontrollably with cold chills or covered him with ice packs and changed his sheets that were soaked in sweat after his temperatures would reach as high as 109. We walked him to the bathroom just hoping he’d make it in time and eventually changed his diapers because it was exhausting for him to get out of bed. Twice, he cut his face open and had to get stitches when he tried to make it to the bathroom alone. We tried to help him sip muscle milk or get something in his system when his entire mouth was covered with mouth sores that caused excruciating pain. Those are just a few of the physical symptoms he endured. As bad as the physical pain was, the emotional pain was even worse. To watch tears stream down his face as he said things like, “What if I never get to touch Sage’s face again, or wrestle with Kade, or go watch Davin and Creed’s soccer game?” or, “What if you get remarried and forget about me and somebody else raises my kids and they don’t remember me as their dad?” was heartbreaking. All I could do was love him and care for him until he took his final breath. All I can do now is try to keep his memory alive for my kids the best I can. All of these things don’t even paint a clear picture of how intense his suffering was. It went on for 8 months with very little relief.
20. Were there any unexpected positive outcomes from Bryce’s battle with cancer or death?
I think that at a young age, my kids have learned that they can do hard things. They always knew that he had this cancer gene and frequently worried that he would get cancer. It gave them anxiety. Now, not only did he get cancer, but passed away from it. They have learned that they can still be happy and that their dad would want them to keep living life to the fullest and keep putting their dreams into action. I also think that all of the tragedy has taught us all to cherish every relationship. The family members that they have left mean everything to them. I feel like they relish in the time that they spend with their living cousins, aunts, uncles and grandparents.
21. What’s one thing you wish you would have known when you were younger?
That life isn’t a fairy tale. That no matter how perfect or faithful I try to be or how many rules I follow, shiz happens. That doesn’t mean that God doesn’t love me, but that we live in a mortal world where bad things happen to good people every day, all around the world. No matter how “good” I am, that won’t change. I do know that I will be given the strength to get through whatever hard things come my way and that I will learn many good lessons from them if I allow myself to.
22. Is there any one thing that helped you most when you realized your husband was going to die? What was it and HOW did it help?
When I found out that the second bone marrow transplant had failed and that he had a week or maybe two to live, I decided to gather my kids in the hospital room and break the news to them. I brought my parents, my sister and her husband, my mother in law and Bryce’s only living brother for moral support. That was BY FAR the hardest day of my life. It was harder than the day he actually died, because it was the day where even the tiniest glimmer of hope that he’d live, was shattered. Listening to my childrens’ hearts shatter as some of them quietly wept and others yelled and screamed, is something I never want to experience again. As we were driving home after a couple of hours at the hospital, Kade was still inconsolable. He went from yelling and screaming, to sobbing, and even to cursing God and swearing. I will never forget how heavy my heart was that day. I felt like nothing could or would ever be right again. When we got home, he went in his room and slammed the door and said that he wanted to be left alone. Within a couple of hours, he let me in his room and was surprisingly calm. He told me that he had had an experience that helped him feel peace and that things would be really hard, but that he would get through it. Seeing him find a calm in the midst of such a powerful storm made me realize that there would always be hard moments, even moments where we felt that all was lost and that the pain couldn’t get any deeper, but there would always be a calm as well. There would always be people who loved us on earth, and beyond, that would help us get through our darkest times.
23. What is something that motivates you.
I’m competitive. When people tell me I can’t do something, proving them wrong motivates me. The first marathon I ran was all because of a bet that my dad and uncles made about me. I had never run a single mile in my whole life at the age of 27. My dad told me that if I ran a marathon that year and qualified for Boston, he’d take me back there and pay for all of my expenses. My uncle, also a runner, told him there was no way I could do that and that it was physically impossible. The bets continued to be made after I agreed to prove them wrong. Long story short, I qualified for Boston on my first marathon with 10 minutes to spare… all to prove a few uncles wrong.
24. If you could give advice to someone going through grief right now, what would you say?
I would tell them to be gentle with themselves. Allow themselves hard moments, hours, or even days. If they need a good cry, go look at pictures and let yourself feel the pain, no matter how gut wrenching it is. Let the pain work it’s way through you and then when you’ve calmed down, find something to smile about. Go to support groups and associate with people who have experienced grief who handle it in a way that you find inspiring, not with people who will make you feel hopeless and in despair. Be proud of yourself for getting out of bed and trying to function, that is a big accomplishment in itself. I remember laying on the couch almost permanently for at least two weeks after Bryce died while my mom catered to my kids and I. I remember telling her that even lifting my arm up felt like a monumental task. Slowly, I worked my way back to functioning physically and mentally. It sounds cliche, but I try to tell myself that “It’s better to have loved and lost than to have never loved at all.” As bad as it hurts to think about so many people I love that aren’t here anymore, I still wouldn’t trade not knowing them and not feeling the pain of losing them, for the privilege of knowing and loving them no matter how short the time may have been.
25. Could you share one story about Bryce’s battle with cancer you think may help people:
I want to talk about the moment that Bryce actually took his last breath. I had built a horrific scene surrounding this moment up in my mind for the previous eight months. I had so much anxiety and fear about this moment that if there was ever a time that I longed for a substance that would completely numb me of all feeling, it was then. Would his fever skyrocket when I was at home with the kids and I’d get a phone call saying he was gone? Would the donor marrow attack his organs and he’d die in his sleep and I’d wake up and he’d be gone? Would I be able to be there and prepare? Would my kids be wailing and screaming and never be able to smile again?
Fortunately, when the time grew near, doctors were able to predict with accuracy an approximate day that he would pass. Forty eight hours before their predicted time, I took my triplets up to the hospital to stay (Kade was already there), knowing that the next time we came home, their dad would be gone. I’ll never forget the feelings I felt walking with our suitcases up the the suite that he had been transferred to so that we could stay with him.
He was fairly unconscious for the last twenty four hours, and we had been told that moments before somebody passes, they usually open their eyes wide as if to say goodbye before they take their last breath. My kids and I were all standing around his bed when this happened. My kids starting screaming and bawling hysterically, “Dad, I love you. Don’t leave me!! I love you, don’t leave!!!” This made me lose control of my emotions as well and caused a lot of upheaval in the room. Bryce kept breathing. I like to think that he couldn’t leave his kids without feeling that they were somewhat at peace. My sister-in-law, Angie, who had already lost two daughters and a husband to cancer, was there in the other room and came in to talk with us. She explained to us that we need to give him permission to leave. He was suffering and was holding on because he didn’t feel at peace about letting go. Other family members also took my kids aside and tried to comfort them.
I decided to let them all have time alone in the room with Bryce. I wanted them say what they wanted to say to him, tell him that he could go find his family that had passed before him and that he didn’t need to suffer anymore. One by one, they had their last moments with Bryce. I watched through a small crack in the door and felt my heart shatter into millions of pieces with each visit. After they were done, we all gathered around the bed again. Within twenty minutes or so, his breathing began to change and I knew the end was near. I called for my mom in the other room because I needed her with me. I was trying to be strong for my kids, but I also needed my mom with me so she could be strong for me. We all quietly wept as the breaths got further and further apart. We all reassured him that we’d be ok and that he could let go. When he took his final breath, we were still weeping, but felt a peace that I can’t describe. We knew that he was in a better place, out of his suffering. We knew that we’d be ok somehow. The dreaded moment I had built up for so long, wasn’t as horrific as I had expected. It was actually quite peaceful. Very sad, but peaceful and I feel like it was an honor to witness him take his last breath and transition into his next journey.
26. Knowing what you know now about a spouse passing away, what’s something you would tell people:
None of us want to consider the possibility that our spouse could die before their time. Especially while our kids are still young. Sometimes avoiding the thought at all feels like the best way to deal with it. However, the reality is, any of us could die at any moment. It’s not likely, but it is possible. I would STRONGLY ENCOURAGE everybody who is married and has children to get life insurance. Even if it’s only enough to pay off your house and maybe your car too. In the unlikely event that something does happen to one of you, eliminating as many bills as possible will make an already devastating situation, that much easier to cope with. Bryce and I had time and a reason (his gene mutation) to prepare. I can’t even put into words how grateful I am to him for paying that $56 dollars every month so that I can stay home, raise my kids and keep them in their activities. His preparation went even a step further though. He had his life insurance set up so that it would go directly into a trust, so that I would receive enough every month to cover all of my expenses and not have the ability to throw it away in a risky investment. The fact that he prepared for us and cared enough about our future to do this for us eliminates so many worries and stresses for my children and I. It also helps me not feel as much anger toward him (yes, sometimes I feel angry toward him for leaving us) even though I know it wasn’t his fault or his choice. That’s just part of being human to feel those emotions. So I’d recommend putting life insurance on your to do list today!! It’s worth every penny, even if nothing ever happens, at least you’ll have the peace of mind to know that your family would be taken care of if something did.
And for fun:
*Favorite book: Most eye opening/life changing book would be A New Earth by Eckhart Tolle. The most enjoyable would be the Harry Potter Series
*Favorite family tradition: Santa and the Easter Bunny have always hidden my kids’ stockings and Easter baskets in extremely difficult hiding places. My favorite part of those holidays is watching them search for them in frustration.
*Talent you wish you had: I’ve always wished that I could sit around a campfire and play the guitar.
*Favorite meal: Lop, it’s a Thai food dish that Bryce used to make. It’s also my kids’ favorite meal.
*Favorite thing to do: Watch my kids in action doing their sport of choice. There’s nothing I’d rather do.
*If you never had to do one specific thing again, what would it be: Change the cat litter, hands down.
*Favorite show on TV: I very rarely watch tv so I don’t even know what any shows are, but I used to record a show called Impractical Jokers and watch it while I ran on the treadmill. I love stupid, ridiculous humor.
*Something that scares you: Mice and rats. I can hold snakes, reptiles, and even smash spiders with my bare hands all day long, but I will scream and run at the sight of a mouse.
*Something you can’t live without: Flavoring in my water. My kids always ask me when the last time I drank plain water was. Other than at a restaurant, I can’t remember.
*What’s something you think about often: My future. How losing Bryce will affect us (especially my kids) long term. Everywhere we go we notice kids with their dads. Sometimes it feels like a dagger to the heart. I always hope that I feel my kids’ pain worse than they do. Anything with “dad” in it is magnified ten-fold to me. I’m hypersensitive to it, but it’s everywhere I turn and always will be. I’m trying to be at peace with it and trust that they will be ok.
Jenni. Thank you isn’t adequate, but I’ve already gushed to you through e-mail how amazing I think you are. Thank you for sharing. Thank you for your truth. Thank you for giving the weary-in-spirit some hope. You truly are incredible.
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