Camilo’s Journey: Holding on to Faith Through the Unknown
Today was harder than yesterday. It’s difficult to even put into words how heavy the day has felt, how many emotions we’ve carried, and how exhausting it is to live in a constant state of fight or flight. Each morning, we wake up hoping for signs of relief, for some glimpse that things are finally turning around. And yet, today reminded us again that this journey is unpredictable, full of twists and turns we cannot control.
Camilo has been through so much already, and yet the last 24 hours felt like another mountain to climb. Compared to yesterday, his vomiting and diarrhea worsened significantly. As parents, it broke our hearts to watch him go through it. We felt utterly defeated. Just a day ago, we had convinced ourselves that maybe things were improving, maybe the worst was behind us. Seeing him struggle again was crushing—it felt like the progress we thought we had gained was slipping right through our fingers.
The GI team came by to assess him more closely. Their presence was both reassuring and sobering. They gently but firmly explained that it was time to escalate his care. The plan, which had been sitting quietly in the background, suddenly became real: an endoscopy, a gastric emptying study, and a colonoscopy. These weren’t new ideas—we knew these tests were on the horizon—but hearing that it was time to move forward hit us differently.
Timing matters so much in these situations. Earlier testing could have been misleading, especially if infection was still present and affecting the results. Now, with things stabilizing in certain areas, the doctors believe it’s the right moment to look deeper. As much as the thought of more procedures fills us with anxiety, we also know they could bring the answers we so desperately need.
In addition to the GI concerns, our conversations with the medical team grew more serious today. We talked at length about the possibility of PTLD—Post-Transplant Lymphoproliferative Disorder. This is something we had heard mentioned before, but it was always further down the list. Today, however, it’s climbed higher in their minds. His EBV (Epstein-Barr Virus) results are still pending, and those results will help guide their thinking. But the reality is, PTLD has become a more significant consideration.
Hearing that word—PTLD—out loud and emphasized shook us. It’s impossible not to let fear creep in when new possibilities like that are raised. At the same time, the doctors reminded us that if this is PTLD, it is very treatable. That word, “treatable,” became something we clung to with both hands. Still, the uncertainty is hard. The endoscopy won’t just help clarify the GI issues; it could also detect if there are any masses or abnormalities that might point toward PTLD or something else.
The team even mentioned the possibility of scheduling a PET scan if necessary. That idea weighed heavily on me. The thought of needing such an advanced test feels daunting—it’s something I silently prayed wouldn’t become part of Camilo’s journey. Yet if it does, we will face it with the same determination we’ve faced everything else.
In moments like this, we remind ourselves of our faith. We believe that God already knows the plan for Camilo’s life. Even when we cannot see the road ahead, even when every turn feels like another obstacle, we trust that He is working behind the scenes. There is comfort in remembering that no weapon formed against Camilo will prosper. These challenges, no matter how overwhelming they feel, do not define his future.
What we hold on to now is hope. Hope that the tests will bring clarity. Hope that the possibilities still include less frightening explanations. Hope that whatever comes, it will be something Camilo can overcome with the strength he has already shown us. And above all, hope in God’s promises—that He has not forgotten us, that He is present in every detail, and that miracles are still possible.
Even though the weight of today pressed down hard on our hearts, we also found moments of gratitude. Gratitude for the medical team who continues to fight alongside us, searching for answers with urgency and compassion. Gratitude for the prayers and encouragement of family, friends, and strangers who lift Camilo up daily. And gratitude for Camilo himself—for his resilience, his light, and the way he continues to fight even when his little body is so tired.
I won’t lie—there are moments when frustration overwhelms us. It’s hard to live in this constant state of tension, not knowing what tomorrow will bring. But then I remember: Camilo’s story isn’t over. Every day he wakes up and continues to fight is a victory in itself. Every smile, every laugh, every quiet moment of rest is proof of the miracles already happening.
As we wait for the next steps—the procedures, the test results, the decisions—we ask again for continued prayer. Please, keep Camilo in your thoughts and prayers. Pray for answers, for healing, for strength, and for peace in our hearts as we walk through the unknown.
We truly believe in full recovery. We believe in miracles. We believe in a God who never abandons His children. Today was hard—harder than yesterday—but tomorrow holds new possibilities. And whatever those may be, Camilo will get through them. He is not forgotten. He is loved. He is held. And we will never stop fighting alongside him.
