Friday, April 18, 2014


As is often the case in life, the things you aren't at all worried about are the things that reach out and smack you down when you least expect it. I was worried about the results of Caleb's sweat test. Even though the results were not what we hoped for (30 units higher than the original test, now well into the clinical range), I absorbed, recalibrated, and resumed "business as usual" with relative ease.

I was not expecting another call from the CF Care Center today. I was not expecting to hear the voice of Caleb's doctor. I was not expecting to feel my stomach fall into my feet and my heart lodge in my throat while still trying to maintain my composure. I was not expecting to hear bad news; I thought that part was over. Turns out, I was wrong.

Caleb's chest x-ray from yesterday shows a very slight thickening in the areas between his airways, called "interstitial space." This thickening can be an indicator of inflammation in the lungs and can be a precursor to bronchiectisis (the permanent damaging of airways due to the build-up of mucous and the stretching of the airways). Fortunately, the change in his lungs from last year's x-ray is very slight. It is possible to reverse these effects with proper treatment and airway clearance. Because we just increased his vest time, and we're already doing Pulmozyme daily, we are going to "keep doing what we're doing", watch him very closely, and re-do the x-ray in six months. If there is no improvement, then we will add hypertonic saline to our daily inhaled treatments.

I have learned in these moments to count my blessings. When darkness threatens to overwhelm, I choose to search for the light. It is always there. Once again, I am so very grateful for our CF Care Center. Knowing what we are dealing with so we can address it proactively is invaluable. Our wonderful doctor spent a solid 20 minutes answering my questions and helped calm my anxious heart. I know Caleb is in good hands.

I am so grateful for the work of the CF Foundation and the generosity of its many financial supporters. Today I feel almost desperate for a cure, and I know that critical research is taking place even now that will one day help save Caleb's life. My heart is full of hope because of the dedication of these doctors, scientists, patients, family members, and volunteers.

I am grateful that in the midst of a storm, my faith in the goodness of God is a solid rock upon which I can take refuge. He is for us, he fights with us,  he loves us. He will sustain us and he will deliver us. When I cannot understand, I can trust. That is a gift beyond measure. The Lord affords me grace for the moment, and it is always enough.

I ask for your continued prayers. First, that the thickening in Caleb's lungs will be completely gone before our next x-ray. Second, that Caleb will stay healthy over the summer and as he starts preschool in the fall. Third, that I will not be conquered by my fear for his well-being, and that I will be able to maintain a positive outlook and a spirit of gratitude.

I treasure your words of encouragement; they help sustain me when my cup runs dry.

Wednesday, April 16, 2014

Reliving the Past

While I don't remember a lot of details surrounding the first few months of Caleb's life, there are a few events that are etched into my memory with perfect clarity. Touching on those moments can bring up vivid recollections and strong emotions, both positive and negative. I rarely dwell on those moments because in reliving them, I am pulled into an emotional vortex from which it is difficult to recover. I love to tell "our story" but there are parts I still skip because the emotion is just too raw.

One of these moments is the day of Caleb's sweat test. The sweat test is just that - a test of how much salt is in a person's sweat. This is the hallmark test for CF and it was the most reliable diagnostic tool for decades before the identification of genes that cause CF. It is still valuable information in that a person's sweat chloride level can somewhat predict the severity of the CF. This is a gross over-simplification, but it is my understanding that in general, the higher the number, the more severe the CF symptoms.

Caleb's sweat test took place when he was four weeks old in the lab at Egleston, a children's hospital in Atlanta. I think my mom was there with me, but to be honest, I'm not really sure. I do remember the terror I felt, not knowing what the test would entail, wondering what the results would be, clueless as to how to raise a child I might someday have to bury. I remember the nurses had to repeat instructions to me. I remember my body still ached from recent birth. I remember the hum of the fluorescent lights and praying to God the scream that was stuck in my throat didn't escape. I watched the nurses wrap my newborn in blanket after blanket, his little face turning red as he started to sweat. I remember wanting to cry but being afraid to let the tears come. I was afraid they would never stop.

Results showed Caleb's sweat chloride levels at just below the clinical range. I clung to these numbers as proof that he would be ok. He would be healthy. He would live a long and full life. These numbers formed the foundation of what would become a carefully-constructed narrative I lived by in the coming months. At times I felt like my grip on sanity was tenuous at best. But as time went by and we more fully educated ourselves about the exciting developments in the world of CF, hope reappeared. Life went on. We fully embraced our new "normal" and found that even though so much had changed, so much could still be the same. We found ways of making meaningful contributions to the search for a cure, and we learned how to turn our fear into relevant action.

Tomorrow morning we are repeating Caleb's sweat test. Best practice is to repeat the test after six months of age; apparently results in early infancy can be inaccurate. We know that Caleb has CF because of the results of genetic testing. That fact is not in question. But it feels like the foundation of my hopeful outlook is being threatened and that terrifies me. Whatever the results, we will deal with it and move on. Lord willing, the numbers will be lower than before.

I am reminded how quickly life can change, and how the results of a single test can turn your life inside-out. I am remembering a lot of things I would much rather forget. I need strength for the day. I need your prayers. Please remember us tomorrow morning.

CF Sucks

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