When the Journey Gets Harder: Camilo’s Story of Resilience

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.

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.