This week, after enduring months of uncertainty and challenges, we finally sensed a shift in our journey. On Monday, we participated in a care conference with all of Camilo’s medical teams, eager for fresh insights into his ongoing health issues. A new GI (gastrointestinal) team joined us, and the transplant team was hopeful that a different perspective might yield new solutions. And it did. What followed was a series of unexpected developments that, for the first time in a long while, felt like genuine progress.
The moment we met the new GI doctor, we experienced a sense of déjà vu. To our surprise, she wasn’t “new” at all; she was the same doctor we had encountered three years ago during an outpatient clinic visit. This familiarity brought an unexpected comfort, and her presence felt like a sign that we were on the right path. She arrived well-prepared, with a clear plan, and began explaining what she suspected might be affecting Camilo. We were relieved to see a doctor who wasn’t just proposing theories but had a solid plan of action.
Her initial suspicion was Small Intestinal Bacterial Overgrowth (SIBO), a condition that can arise after multiple rounds of antibiotics. After so many treatments and medications, this could be a potential issue that had gone unnoticed. We began treatment immediately, though ironically, it involved another antibiotic, this one functioning in a completely different manner than the others Camilo had previously received. Almost instantly, we began to see results.
For the first time in what felt like ages, we witnessed a formed stool. The relief we experienced was immense — it was a moment of pure joy, a small yet significant victory in the long, arduous journey we’ve been on with Camilo. This was a clear indication that something was finally starting to work, that his body was beginning to respond.
But the good news didn’t end there. Camilo’s condition began to improve in other aspects as well. He started eating more by mouth, something we hadn’t observed in a long time. It felt like a breath of fresh air for all of us — the constant anxiety about his nutrition, pain, and discomfort gradually began to lift.
We’re all cautiously optimistic now. The GI team is participating in daily rounds to closely monitor Camilo’s progress, and so far, things are looking positive. The biopsy results returned clear, which was a tremendous relief. The treatment for SIBO appears to be effective, and we’ve started to decrease his reliance on TPN (Total Parenteral Nutrition), which means less dependence on intravenous feeding. This is a significant milestone, as the goal is to eventually wean him off TPN entirely. It’s a gradual process, and we’re taking it one step at a time, but the signs are encouraging.
To support his progress, we’re also monitoring his daily calorie intake. With his oral intake increasing, the plan is to gradually lessen the amount of G-tube feeds he requires. It may not be long before he needs very little, if any, G-tube feeds at all. If Camilo continues to eat like this, this dream could very well become a reality. We’re hoping that the positive momentum continues and that we can keep celebrating each small victory along the way.
In addition to the GI treatment, we also switched Camilo’s G-CSF shots to a new brand. These shots help boost his neutrophil count, which is crucial for fighting infections. The new brand is known to have fewer side effects, which gives us a sense of hope. Typically, any side effects appear around 40 hours after the shot, so we’re anxiously waiting and praying that this time, there will be no unexpected reactions. It’s another step toward enhancing Camilo’s quality of life, and we’re hopeful that it will be a smooth process.
As we move forward, we’re learning to trust the process and celebrate each win, no matter how small. The journey has been lengthy, and there are still many challenges ahead, but for the first time in a while, we’re witnessing progress. We’ve faced so much — ups and downs, uncertainties, and constant battles — but the resilience Camilo has shown, along with the unwavering support from his team and our family, gives us the strength to keep pushing forward.
Every small victory feels monumental, and with each positive change, we’re reminded of just how far we’ve come. We’re not out of the woods yet, but this feels like the start of something better. We’ll continue to trust, believe, and take each day as it comes, with gratitude for every moment we get to see Camilo smiling, eating, and making progress.
Thank you for all the support, prayers, and encouragement. They mean the world to us as we continue this journey. 💛
What’s your hope for Camilo as he continues his recovery? Share your thoughts with us in the comments.
