It was this same Monday (January 20, 2020) a year ago that I reluctantly packed all 5 kids in the car on a frigid morning to make a return visit to the pediatrician who was still concerned about Valor after seeing him for a fever, cold symptoms, and two skin sores the day before. She could not check his blood levels on Sunday due to the machine being down, and even though she ruled out obvious illnesses like flu and strep, she just felt something was off with him. I’ll never forget the look on her face when his white blood cell count came back at 1. Quietly kneeling beside me and almost whispering (I think in an effort to spare the kids), “His white blood cell count is at 1. He needs to go to the ER right away. If you didn’t have your other children, I would call the ambulance, but we will call the ER and be sure they are ready for you.”
I politely interrupted and matter of factly said, “I will call my husband to come immediately and pick up the kids. I won’t take them to the hospital.” “In that case, I’ll call the ambulance.” Ambulance and Elijah arrive about the same time. After Elijah finds child care, he joins me at the hospital where the first ever consult with Duke Hospital begins as Valor’s blood work leaves the Pediatric ER doctors mystified. Valor is admitted and after about 24 hours of consistently low blood levels, Duke agrees to transport and admit him. This would be our first ambulance ride and first stay on “5100”—the HE-MOC wing (short for hematology/oncology) or the pediatric cancer wing.
Once meetings with “the team” of 8-10 med students/residents/and the guru attendant begin, the mystery seems solved, a virus is suppressing Valor’s bone marrow. Except for antibiotics and needing a blood transfusion for anemia, he should recover on his own. After a week-long stay, we pack our bags and I feel mixed emotions—gratitude that this will likely be our only visit to “5100” and sadness for all the families who face ongoing, devastating diagnoses in their children. I truly felt we would not return. At a follow up visit I asked, “What are the chances this could happen again?” The experienced hematologist said, “Oh, very unlikely...Unless he were to have something extremely rare.” We had dodged a bullet.
Almost exactly 2 months later, Valor has cold symptoms and a fever. He goes down hill quickly and his behavior is all too familiar. I knew something was wrong. Sure enough blood levels are low, and now, his low weight further confirms “failure to thrive” (it was noted with his first hospital stay but he was borderline and efforts to supplement and work on feeding had just begun). He is awfully small and awfully ill, based on blood work. The Fayetteville hospital wants to life flight me and him in the helicopter to Duke, but higher critical care needs overruled, and we take our 2nd ambulance ride. The kids still talk about the “almost helicopter ride” today with a bit of disappointment, but I had relief. Don’t think my tummy would have handled that well.
Back to “5100.” Wow, I never imagined we would return. This was the “diagnosis stay.” For 2 weeks Duke became Valor, Elijah and my home. While initially doctors thought it was just a repeat of “viral suppression of the bone marrow,” a young hematologist who “couldn’t stop thinking about Valor one night” suggested a bone marrow biopsy. And a very matter of fact gastroenterologist extends our stay as she suspects issues with the pancreas and is the first to preliminarily suspect Shwachman-Diamond Syndrome (SDS). I felt gratitude and resentment toward this doctor at multiple times. She was finding the cause of Valor’s illness that would then allow us to treat him, but she was also the bearer of bad news and didn’t shy away from it. We needed her frankness, and still do, but we felt gut-punched nonetheless. Though a bit more gently, hematologists report the results of the bone marrow biopsy—Valor’s is only functioning at 60%. With bone marrow and pancreas issues, doctors who “aren’t the betting type,” bet on this diagnosis—SDS—a genetic disorder, incurable, extremely rare, shortened life expectancy, increased risk of leukemia, plays out differently in each child, time will tell how it manifests in Valor. Let the tears, fears, and prayers flow—no bullet dodged here—our son has a devastating diagnosis.
Well, jump past 6 more late night/early morning ambulance rides and trips to “5100,” too many iv’s and needle pokes to count, several rounds of antibiotics, 2 more blood transfusions, an ever growing list of “issues,” weekly weight checks and doctors appointments, and lots of prayer to...today.
I reluctantly loaded Valor into our van on this bitterly cold (by Fayetteville standards) morning to take a trip back to the safari themed pediatric room where Valor’s pediatrician first whispered to me. Except this time I wasn’t holding an almost listless child with fever, dehydration, and severe weakness. Valor was climbing all over the place. Smiling and laughing at all the animals in the room, especially the stuffed tiger hanging from the ceiling. He was getting his last “non-live”, catch-up vaccine from the ones he missed while doctors discerned his reaction to SDS. A visit with just the nurse, a quick poke, a short cry and out the door we went to our van and back home. Quite a contrast to a year ago.
In mid December, I dutifully asked prayer for Valor during a healing service at our church. I believe God can heal him. Was I believing He would heal him in that moment? Probably not. But ever since, we have only received good news about Valor. We were sent home from the local pediatric ER on Christmas Eve when a fever turned out to be nothing and all blood levels were normal. He’s had consistent weight gain (except for a week dealing with a virus) and now registers on the normal growth chart for weight even if it is just 3rd percentile. And at a recent routine liver and hematology appointment, concerns about his liver were minimal and his blood levels were the best they’ve ever been.
When Valor was diagnosed, Elijah and I spent one evening presenting all of our fears to god (they were many, gut wrenching, tear jerking). On another night, we listed all our hopes for Valor (they were many, butterfly stirring, and joyfully tearful). The popular carol, “O Little Town of Bethlehem” took on new meaning for us—“the hopes and fears of all the years are met in Thee (baby king Jesus) tonight.” I can still see Elijah’s tears streaming down as he sang this song to Valor while Valor lay resting in his hospital bed. Thankfully we can sing this song to him today as he wobbles and runs around our house, plays with his siblings, and truly brings delight to our lives. We prayed then and continue to see now that God is and will be our Valor!
Meet the Authors: Elijah & Brandi Lovejoy
On March 15, 2019 nine days before his 6 month birthday, our son, Valor Emmanuel Lovejoy, entered Duke Children's Hospital for the second time with a recent fever, low white and red blood cell counts and a below 1% weight chart gain. Doctors suspect Valor has Shwachman-Diamond Syndrome, a disease that effects bone marrow health, pancreatic function and sometimes skeletal structure, among other symptoms. You can learn more about SDS here: www.shwachman-diamond.org. I (Elijah) am a pastor, and I (Brandi) am a volunteer Children's Ministry Director and home school mom to our five children.
These Chronicles are written from a Christian perspective in the spirit of 1 Corinthians 11:1, "Follow my example, as I follow the example of Christ." We believe the Lord does his best and deepest work through profound patterns of death and resurrection, particularly as pioneered and embodied in Jesus Christ's own death and resurrection. Through faith and ongoing participation in Jesus' death and resurrection, we offer these Valor Chronicles in hope that others will find comfort, hope, peace and resurrection life with us in Jesus.