Sadie, is a woman who immediately lights up any room she enters. She has a genuine, contagious smile, and puts so much passion into her role as a mother and wife. I knew the moment I met with her, that you will love her too. She is just that type of person.
Tell me about your family.
My husband and I both grew up in Idaho. When we both finished school, we moved down here to work, and met in Salt Lake City. After being married for a year and a half, we got pregnant and had our first son Sawyer, who is now 7 years old, and then Graham, who is now 5 years old.
Tell me about Graham, and where his story began.
At about one month old, Graham started screaming in his sleep, almost like someone was hurting him. This kept up night after night after night. I couldn’t figure out what was happening. After one of the first nights, I noticed a small raised bump on his eyebrow. At first, I thought it was from getting mad and thought maybe he hit himself in the eye. Within a week, he started getting these unusual bumps on his back. They were raised, and purple. I watched it for a couple weeks, and ended up taking him in to the doctor. My pediatrician told me to continue to watch him, but in the following weeks the bumps continued to multiply. We were then referred to a pediatric dermatologist at Primary Children’s Hospital.
It took about two months to get an appointment, but when we ended up taking him in, the dermatologist looked at him and ended up bringing a group of about six people in. They were all looking at him, studying him, taking pictures, and ended up doing a biopsy. During this time, I kept telling my mom and husband that I felt like it was cancer for some reason. I kept thinking, Why would these bumps be multiplying like this?
It was after we had been back home for a week that I was headed to my nephew’s funeral in Idaho. I got a call from the pediatric dermatologist. She said, “Where are you at?” I told her I was headed to my nephew’s funeral. She said, “You need to turn back around right now. Graham has leukemia and we need to admit him to Primary Children’s by 4:00 today.”
I remember I had just driven through a huge snowstorm, and I thought to myself, I can’t possibly go back through that awful snow storm right now, with this news. And, I’m missing my little nephew’s funeral. Tears just welled up in my eyes. I felt hopeless. I remember turning around, driving back towards Salt Lake, and the storm had somehow disappeared. We went right up to Primary Children’s Hospital and they weren’t sure exactly what kind of leukemia it was. Leukemia is in your blood and bone marrow, and Graham’s was manifesting in his skin, and so it took them a while to figure out what was going on. This happened on March 25th, and they didn’t admit him until a week and half later because they weren’t sure of how to treat it. He was just four months old.
Wow- four months old? As a mother, what would you say was one of the most difficult things watching your son, at only four months old, go through treatment?
Graham was really, really sick throughout treatment. The first two or three rounds of chemo really took a toll on his body. At one point, the oncologist told me that he was their sickest patient with highest concern. As a mother, it’s never good to hear something like that. In his first round, he had high fevers for weeks. They were 104 to 105-degree fevers, day after day, and night after night. Nothing would take his fevers down; not Tylenol, not anything. It was at that point he also stopped nursing, and wouldn’t eat. He would just lie in my arms and sob and whine and whimper. He was so miserable, and those were the hardest weeks for me. They would keep telling me, This is the longest we’ve had a kid in the first round. Those were long and hopeless days.
Another really difficult time I specifically remember was when he got mouth sores. The sores were so bad. They went clear down his throat into his stomach, and his mouth constantly bled. I sat and watched my little baby, while his mouth was literally coming outside itself, thinking, How is he ever going to heal? How is he going to come out of this? Is he going to live? He was in the ICU for a while. Due to other complications, he had so much edema, or fluid in his third-space, making his belly huge and distended which was caused by a liver clot in his portal vein. This caused him difficulty breathing, and he had some really hard times through all of that. I felt so helpless.
I imagine you spent many nights up at Primary Children’s?
Yes, I spent every night up there except for a few when my husband stayed. Graham was inpatient for almost seven months. He did four rounds of chemo: the first lasted 39 days. Then, he’d come home for a week or so to let his counts recover, before heading back up there. He was admitted in April and came home in September.
It was such a huge struggle because leaving Sawyer at night to go visit Graham at the hospital was something that tore at the very center of my heart. I actually have a lot of great friends and family who would go up and stay at the hospital for a few hours at night so I could get Sawyer tucked into bed and kiss him goodnight. There were so many nights when he’d beg, “Mom, please don’t go back to the hospital tonight. Don’t go back.” It tore at my heart. He’d actually sleep in bed with my husband many of those nights while I was with Graham at the hospital. But that was difficult as a mother being pulled in different directions and feeling torn either way. But, I am lucky to have a husband that filled the void for Sawyer so well. My mom and mother-in-law also took turns living at our house for 7 months straight. They both live out-of-state so it was a huge sacrifice that they both so willingly made. My husband and I will never be able to put into words the overwhelming gratitude and love we have for both of them.
What would you say helped you overcome your worries and fears throughout all of this?
I’m a religious person, and I think many things that are spiritual for me helped bring me through many of those hard days. It made me think of faith in a different way. It made me think about God’s will versus my will. We prayed for faith. We prayed a lot.
On the third day that Graham was in the hospital, all of our family and friends started a fast for him. In my church, we sometimes collectively fast for those in need. There were many people who I didn’t know, that joined in on that fast. They started the fast around 6 pm or so. I had just come home to tuck Sawyer in to bed, and one of my sister-in-laws was sitting at the hospital with Graham while I was home. She called while I was giving Sawyer a bath around 8 pm and said, “Graham’s not breathing and his heart stopped.” I said, “Oh my gosh, is he alive!?” Her voice was shaking and she replied, “I don’t know. There are so many people gathered around him right now trying to revive him, but I had to leave.”
As we were talking the phone cut out, and I yelled at Nathan, my husband, and we bolted out. There was a snowstorm, but we drove 120 mph up there. I’m not sure how we made it up alive. As we got up there, they were just wheeling him into the ICU. They told me he had stopped breathing, that they had done CPR for about seven minutes, and that it had taken about four to five minutes for his heart to start pumping again.
I just remember thinking of all the people that had been fasting and praying for him that night, and knew that it was a true miracle that he was still alive and also didn’t have any repercussions from the trauma. Nobody knew how much we truly needed those extra prayers and fast that day, yet it came at the most perfect time. The power of those prayers is something to me that I can’t deny.
Does Graham’s resilience and positivity today help you get through your own struggles day to day?
Yes. There are two quotes from my time at the hospital that have always stuck with me. The first is that, “Faith and fear cannot reside together.” Fear is debilitating. It affects your every day life. It affects your progression and your happiness.
The other quote, which has a few different variations, says: “If God brought you to it, He brought you to it for a reason. So dry your eyes and learn something.”
I always felt like during Graham’s treatment, it was so hard and exhausting, but it was amazing how much goodness and happiness overlapped the sorrowful times. Things are what they are, and we can’t always choose what happens to us, but we shouldn’t be living in that fearful space. I see Graham and other kids who have gone through something similar, and I think the reason they can thrive and move on so quickly is because they just have something that adults don’t. They carry with them faith rather than fear. So if I can try to be positive and carefree, and not worry so much, then my own struggles seem more bearable.
Tell me about how your diagnosis of cancer came about?
I had tried to get pregnant for a few years after my boys. With them it came so easy. With this one, we struggled. We tried and tried and finally decided to look into other fertility options. After a few tries I was able to get pregnant last spring and was so excited. At our fourteen-week appointment, we went in and got the horrible news that I had miscarried.
I remember thinking how bad I had wanted it to work out. It was a girl, and I didn’t realize how much I had wanted a little girl until I was going to have one. I remember thinking Why? We’ve been wanting this for so long. Throughout the summer I just felt rotten. I kept feeling dizzy and had an elevated temperature, and so finally on October 30th, which was the due date of our baby, I got a CT scan done. They called me and told me they found a large mass on the back of my brain, and they weren’t sure if it was cancerous or not. I went in later that day and had an MRI and the results came back that it was benign. It was a super common tumor, a meningioma, and the doctor had explained how slow growing these tumors are. At that point, I had a positive outlook on things.
November 12th I went in for surgery. A four-hour brain surgery turned into an eight-hour brain surgery. Nine days later as I had been recovering in the hospital, the brain surgeon came in and told me the pathology had come back showing something different. He told me they had found the mass to be cancerous, or malignant. It had actually been a completely different tumor than they had thought, called a hemangiopericytoma. He said it was considered “Stage 2 or 3,” that it was a very rare type of tumor, and that they don’t know too much about it, or hardly anything about it. That changed the whole picture for me. They ended up doing seven weeks of radiation. I went five days a week for seven weeks up at Huntsman Cancer Institute. Again, my mom moved down from the start of November until about March and took care of my boys and basically just took over my roll. Together with my husband, they took great care of me. Now I have MRI’s every six months to check up on things.
I don’t mean this in a “humble-look-at-me” way, but honestly I feel like watching your child go through it, is so much harder. I am truly just so glad that it’s me, and not Graham relapsing. Because, I simply couldn’t do that again.
I know you’ve been through times when you haven’t felt physically well, and there are many women out there, who are struggling with parts of their physical health. What things do you do to help you feel stronger mentally, or spiritually as well?
I’ve learned you can’t compartmentalize your physical, mental or spiritual health. They are all intertwined. I think I’m still in that process, of just trying to get everything together and in a healthy place. Physically, I try to walk and eat well. Everyone has his or her different ways of feeling healthier, but this is what I do. I feel like when I am eating the proper nutrition, this helps me.
Mentally, I’m still working on pieces of that. Some days I feel doomed, I guess you could say. My tumor is such an aggressive one and highly reoccurring. Sometimes I feel like I’m just making wagers with Heavenly Father saying, Please give me this amount of time, and then whatever happens, happens. I know that sounds dramatic, but I just want to be there for my kids until they get older, and to a point where they’re okay. But I can’t bear the thought of leaving them. So my biggest thing is making sure that I can be there for them now. I’m trying to raise the best kind of boys I can, and teach them the best things I can, so that they grow up loving God and their family and are good people. Everyone’s way of moving forward is different. Sometimes for me, just talking about it is very helpful. Everyone has his or her own therapy.
What would you say about living in the moment?
While living at the hospital, I realized that I was happy without needing very much. I realized if I had my family, I had everything. When I am with them, that’s when the moments count the most. I would sometimes go home and see my closet full of shoes and clothes, or all the makeup I had on my counter, and I realized how little I cared for that. I just wanted to be with my family. They are my most prized possessions, and nothing else really matters. You start to realize how much you don’t need, in order to be happy. Material things are not happiness….as cliché as it sounds.
I think sometimes I feel too much pressure when I think of “living every day like it’s your last,” like some people say. What’s helpful for me is to focus on living in my normal routine and making the best of each little thing. For example: having picnics in the front yard, or going outside to throw the football, or riding bikes, or making sure my boys are reading good books, and being the best they can be. To me, life is fulfilling when I am being the best mom I can be in my everyday moments. It’s the little things that make life great.
Interview edited and reviewed by Sadie Schanz prior to release, June 13, 2016
