Six months ago today we received news that changed our family forever. It was a Wednesday afternoon, I was at work. A week prior we had received word that Evan's newborn screening test (which all babies born since 2011 must undergo) came back with Cystic Fibrosis 'indeterminate'. Our doctor told us this was nothing to worry about. 90% or more of 'indeterminate' results come back negative once more in-depth testing genetic testing is done.
We weren't worried.
At 3:30 in the afternoon on Wednesday October 9th my phone started ringing. I picked it up and heard Stacy, frantic, on the other end of the phone. I stepped out of my office and asked her to slow down. She said the doctor's office had just called. Evan's doctor wanted to meet with both of us at 6:00 that night. It was about Evan's test results. We both needed to be there.
I rushed home. We tried to think of a possible way it could be good news. Maybe the tests had shown he had some crazy athletic gene or genius gene. Maybe he would be 7 feet tall and an NBA star. We were grasping at straws.
We got in the car and went on a drive. There was no way I could go back to work, and sitting at home wasn't an option. It was a rainy afternoon in the desert. We drove clear to Pine Valley (45 minutes from St. George). On that drive we promised each other that we would stick together and that, regardless of the trials ahead, we would take care of Evan.
We left Jaxson with some friends in our ward (thanks Bennions and Woolleys) and then went to the Doctor's office. They took us into an exam room. I noticed that the nurses wouldn't look us in the eye as they took us back. Eventually the doctor came in and said, "We do a variety of tests to look for Cystic Fibrosis, and this time it appears we found it." Genetic tests done in Salt Lake had confirmed Evan had CF.
A wave of shock rushed over us both. And then the questions started pouring out. How long would he live? What would his quality of life be? What the heck is Cystic Fibrosis? What does this mean for our family? Would he have a normal childhood? Could he play sports? Could he serve an LDS mission? Could he have children of his own?
The doctor did his best answering our questions. He then said we needed to be at Primary Childrens' in Salt Lake at 11:00 the next morning. They could, he said, answer all of our questions.
We staggered out to the parking lot.
Once we got into the car, we both lost it. We sobbed for a solid 15 minutes and just held each other. We went back to our neighborhood, picked up Jaxson and went to our house.
Then we called both of our parents. Those were tough phone calls.
I didn't sleep that night. I spent most of the night online researching Cystic Fibrosis and the rest of the night tossing and turning and praying. We left for Salt Lake early. Along the way we met my parents who took Jaxson and followed us to Salt Lake. Seeing them was very emotional, but we were grateful Jaxson would be with them so we could focus on Evan.
The next two days were a blur. We spent a total of 15 or 16 hours at Primary Children's over the next two
days. We met Evan's CF team--a pediatric pulmonologist, 2 CF nurses, a respiratory therapist, a nutritionist, a social worker--and other support staff. One of the hardest things about that trip was when Jaxson had to be tested for CF. Because the disease is genetic, there was a 25% chance Jaxson had it too. The test is not fun. They put Jaxson in a chair, cover his arms in pads, and then basically shock his arms until he sweats a lot. Based on the consistency of the sweat they can tell if he has CF or not. The sweat collects in the pads so they can analyze it. It is a painful test and was hard for a 2 year old boy to understand. We told him that they were testing to see if he was a superhero or not. They wanted to see if he was Spiderman so they had to test his arms to see if they could shoot out spiderwebs. He was a trooper during the 30 minute test. It was tough to watch him be scared and he was, at times, in pain. We were relieved when the test came back negative. Having Jaxson test positive as well would have been crushing.
So...since then we've gotten used to our new realities: 98 pills (and growing) each week, 90 minutes of lung therapy each day, nebulized medications every day, germophobia, monthly visits to Salt Lake, and the realization that there is a higher statistical likelihood that Evan will die before he's 18 then there is that he will have normal lung function when he's 18. And that a common cold or flu for you or I could, simply, kill him. The most difficult reality is that there is no 'we'll get through this tough trial' mentality. There is nothing to 'get through.' He won't get better. He will only deteriorate. Our goal, simply, is to slow that deterioration.
But we are also encouraged by the medical progress being made. Average lifespan is now around 40 years old--it used to be under 5 years. New drugs are in the pipeline to be released in Q3 2014 that have the potential to make that lifespan substantially longer. We hope and pray every day for a cure.
The nurses at Primary Children's were so kind. They cried with us, they hugged us, and gave us support. Our ward and our friends were incredible. They have been extraordinary. Thank you. My company has been awesome too. They've been very understanding and supportive. Our families, though, have been our rock. My parents have been totally willing to take Jaxson overnight while we take Evan to see his doctors. We simply couldn't have done all of these appointments without them. Stacy's mom flew down immediately after we found out. Those were a tough few days and we couldn't have made it through without their help.
So, anyway, 6 months later we've made some changes. We realize that worrying about the future isn't the most important thing. The most important thing is having a high quality of life right now (that's the worst financial advice ever, I know). We simply don't know how long 'the future' will be for our family so we're trying to enjoy every day with our boys.
We are 6 months into our new reality and we're doing well. Thanks for your support and love.
