In the world of pediatric oncology, time isn’t measured by a traditional clock. It is measured by the flicker of a thermometer’s digital display and the steady drip of an IV bag. Right now, our family is a house divided by necessity but united in purpose. Granny and I are holding down the fort here at the hospital with Will, while Jason is back home, playing nurse to get sweet Charlie back on his feet. We are fighting a war on two fronts, but every prayer and every thought is focused on one goal: getting our boys healthy and home.
1. The Battle of Numbers and the “48-Hour Clock”
Friday started with a jolt of fear that every cancer parent knows too well. In the early morning hours, Will’s fever spiked to a terrifying $102.9^\circ F$. In this journey, a fever is never “just a fever”; it is a potential emergency, a sign that the body’s defenses are failing. We held our breath as the medical team ran viral tests and cultures, waiting for the results that would tell us what kind of enemy we were facing.
Thankfully, the cultures came back negative. The culprit, the doctors believe, is mucositis. These are brutal chemo sores that have traveled all the way down Will’s throat. Imagine having open wounds lining your esophagus; he is in so much pain that eating has become an impossibility. Every swallow is a battle, and every breath is a reminder of the inflammation ravaging his small body.
Now, we are at the mercy of the “48-hour rule.” To move forward, Will must be fever-free for two full days. It sounds simple, but it is a psychological marathon. This afternoon, he received a blood transfusion. While life-giving, blood has caused him to spike a “sympathetic fever” twice in the past. If his temperature rises even a fraction of a degree tonight, the 48-hour clock is smashed, and we have to start back at zero. We are sitting in the stillness, praying that this time, his body accepts the gift of new blood without a protest.
2. When the Walls Start Closing In
Because Will’s blood counts have “bottomed out”—meaning his immune system is virtually non-existent—this hospital stay has come with a strict “no visitors” policy. It’s a necessary precaution, but it’s a lonely one.
When you are confined to a single room with the constant hum of machines and the smell of antiseptic, the walls start to close in remarkably fast. The world outside keeps turning, but inside these four walls, everything is suspended. Isolation can wear down the spirit of even the strongest warrior, and for a child who has already spent so much of his life in a gown and a bed, it’s a heavy burden to carry. However, we have made a conscious choice: we will not let the boredom win.
3. Binge-Watching, Takeout, and “Normalcy”
Granny and I have turned this hospital room into a makeshift fortress of entertainment. To pass the time and keep our minds from spiraling into “what-ifs,” we have been binge-watching a series on Amazon Prime. There is something strangely therapeutic about getting lost in someone else’s story when your own feels so overwhelming.
Last night, we all huddled up and watched scary movies—a bit of a thrill to distract us from the very real scares of the medical world. If Will feels up to it tonight, we’re going to do it all over again. Tonight, Granny and I took a small break to walk down the street for Chinese takeout. That small act of walking outside, breathing fresh air, and carrying back a bag of noodles felt like a grand adventure. These tiny slivers of “normalcy” are the anchors that keep us from drifting away in the sea of medical charts and IV poles.
4. The Thursday Horizon
Our eyes are fixed on the coming Thursday. That is our next scheduled chemotherapy session. I hate that this “break” from treatment ended with him back in the hospital. He was supposed to be resting, but instead, he’s fighting mucositis and fevers.
Will has two very long weeks ahead of him. Two weeks of intense treatment, two weeks of living in this room, and two weeks of being poked and prodded. These stays are brutal on his mental state, as they are for anyone who has to stay with him. But in this life, you don’t complain about the exhaustion. You just do whatever needs to be done. You put on the brave face, you find a new show to watch, and you keep moving toward the finish line.
5. Blessed by a “Small Village”
In the midst of this struggle, I am struck by a profound sense of gratitude. We often hear the phrase “it takes a village,” but we are living it. We have a “small village” that rises up every single time we stumble.
They are the ones making sure Jason has what he needs at home, the ones checking in on Charlie, and the ones covering us in a blanket of prayer from afar. You know who you are. Whether you dropped off a meal, sent a text, or spent ten minutes on your knees for Will, you are the reason we are still standing. We are so incredibly blessed to have you in our corner. Without this community, these hospital walls would have closed in on us long ago.
Conclusion: A Prayer for the Clock to Keep Ticking
As the hospital lights dim tonight, my prayer is simple: Let the thermometer stay low. Let the 48 hours continue to tick away without interruption. I pray for the sores in Will’s throat to begin to heal, so he can taste a bite of food or sip some water without flinching in pain.
We will keep watching our shows, we will keep leaning on each other, and we will keep our eyes on Thursday. We are in the home stretch of this specific leg of the journey, and though the road is rocky, we are not walking it alone.
Thank you for staying with us. Thank you for being our village.
#WillStrong #ChildhoodCancer #MucositisWarrior #SmallVillage #FaithAndFamily #StayStrongWill #HospitalLife #PrayersNeeded #WarriorSpirit
