Assistant teaching professor Scott Summers and his family have spent the past two years working to cure Koven (center) of a rare genetic disease.
Each year, around twenty million people flock to Walt Disney World to experience the adrenaline rush that rides going at breakneck speeds provide, as well as the overall atmosphere of enjoyment that comes with an amusement park.
This winter break, however, the park will have guests who themselves have been on an emotional and spiritual roller coaster far more potent and turbulent than anything in the Magic Kingdom.
Assistant teaching professor Scott Summers and his family have spent the past two and a half years handling the severe illness of the youngest member of the family. His recent improvement, however, is offering the family the chance to adapt to a new normal where instead of frequent trips to the hospital, family outings can be to the mountains or even faraway Orlando.
Summers has been involved in nursing ever since he graduated from Idaho State University in 2007; it’s also where he met and married his wife, Kendra. Summers eventually got a masters’ degree from BYU in 2011 and returned to teach this year. His expertise is helping patients with head, neck, ear, nose, and throat surgeries.
In fact, that became critical when his son Koven, the youngest of three, became ill.
“When he was four months old, he got sick and we ended up being life flighted to Primary Children’s Hospital and spent two weeks up there,” Summers recalls. “He had surgery on this big neck infection he had. It was crazy because at that time I was the one who found the neck infection because that’s what I specialize in.”
A few months later, Koven again became ill. Summers grew more concerned; Koven’s symptoms were beginning to look like chronic granulomatous disorder (CGD), a rare genetic disease that reduces the body’s ability to fight certain types of infections.
Testing revealed that Koven did have CGD. For Summers, this was hard to bear both as a parent and as a medical professional.
“It’s good to have the background knowledge, and it’s bad to have the background knowledge,” he says. “I call it the burden of knowledge because you see and know what to expect with certain situations, outcomes, percentages, and different things like that. It’s good because then you also know what we need to be doing and what the next step is, so it’s not always that uncertainty.”
The next two years would be replete with challenges as the Summers worked to preserve Koven’s health.
“His white blood cells can’t fight certain types of infection, so certain bacterial infections and fungal infections, he’s really susceptible to,” explains Summers. That vulnerability, he says, “kept us a little more grounded within a half hour of Primary Children’s Hospital.”
Koven was in and out of the hospital frequently, which was difficult for the family to manage. Oftentimes, grandparents would have to be called in to watch the other two children while Summers and his wife were with Koven. This was challenging, but also provided unexpected blessings to the family.
“Over the past couple years, we’ve had to ask a lot of help, which we don’t love doing,” he says. “I think it’s made us stronger. It’s taught us to rely on each other, to keep other members of our family in our prayers and thoughts.”
One of the turning points for Summers was when he asked his father to give Koven a priesthood blessing.
“In the blessing he gave some special promises,” Summers says. “I then knew things were going to be OK regardless of what happened, and it changed a lot of my thinking going forward.”
That hope was important as the Summers looked for ways to cure Koven.
“Before we knew that he could do a transplant, because we didn’t know if we would have an adequate donor, [we kept him] on medication to try and manage the number of infections, but the medication was particularly hard on him, and it limited what we were able to do as a family,” Summers says. “One medication made him so sensitive to the sun that he would break out in blisters all over his skin, so we didn’t spend a lot of time outside that summer.”
Faith helped sustain the family during these difficult times. Scott was grateful for his knowledge of the gospel of Jesus Christ, which served as a strong foundation in trials.
“It’s been a journey, but on the other hand it’s been really nice having my knowledge even outside of medicine to fall back on, my knowledge of the gospel and knowing that regardless of what comes out of it, it’s going to strengthen our family and allow us to continue to progress with Heavenly Father’s plan,” he says. “Obviously we hoped that with time everything will go back to normal and we would have a happy, healthy little boy, and this would just be a memory. I guess it was more of a hopeful optimism, but as things progressed, I began to more easily see blessings in our lives that maybe we wouldn’t have noticed before or had not fully appreciated, which just further strengthened my belief in our Heavenly Father’s love for our little family.”
Over time, a new light appeared on the horizon. One of the techniques for curing CGD that has been developed in recent years is doing bone marrow transplants from suitable donors. This requires specific donor qualities, which the Summers found out their six-year-old daughter had. Preparation quickly began for the procedure, but even that entailed immense struggles since Koven’s immune system had to be essentially annihilated to prevent his body from rejecting the new marrow.
“After we got the okay for transplant, we had to wait until [Koven] was healthy enough to undergo the transplant,” Summers says. “At the time he had a nasty infection in his bone, and we were still waiting for the fungal infection in his lung to clear up enough so that we could kill his somewhat functioning immune system with chemotherapy in preparation for the transplant.”
Following this difficult process, the transplant was completed at the beginning of this year. Koven spent a month in the hospital, following which began the waiting period at home to see if his body would reject the transplant. It was fraught with risks of more infection, but as Summers says, “We were back together as a family, which gave us a new kind of hope.”
Luckily for the family, the transplant appears to be working.
“Months have gone by since that time, his hair has grown back to normal,” Summers says. “He still has a risk for other things down the road with having a bone marrow transplant, but it now gives him bone marrow that can fight those infections. Just like any kid he can get a runny nose and whatnot, but now his body can actually respond and fight that bacteria that’s causing it and hopefully be a happy and healthy little kid.”
The ultimate evidence of Koven’s health rebound is the family vacation to Orlando this Christmas. “That’s our big hurrah to take our kid to the germiest place on earth and let his immune system be challenged and excitingly not have to worry about it,” Summers says.
Summers has come to understand the importance of patience, empathy, and hope during trials, and is now excited for his family to enter a new stage of life.
“I just explain the process like walking through the forest. You have a map, so you know where you need to go, but the trail is a little different for everyone,” he says. “There can be trees that have fallen down, but for us, there is now light at the edge of the forest and just a few more trees on the path.”