Thursday, November 11, 2010

The CF Journey Continues...

Today was Caleb's monthly check-up at the CF Center. My parents thankfully agreed to take him because both Darrell and I had to work. Hearing about their experience today (the first time either of them has been to the CF Center), I was taken back to those first few weeks of dealing with the CF diagnosis.

On February 15th, at a little after 1:00pm, my phone rang. I shifted three-week-old Caleb into the crook of one arm and answered, "Hello?" The voice on the line said in a very matter-of-fact tone that Caleb's newborn metabolic screening came back positive for cystic fibrosis and we needed to get in touch with Emory's Cystic Fibrosis Clinic in Atlanta as soon as possible. "What?" I asked in disbelief. She repeated her news, gave me the number, and again encouraged me to call as soon as we hung up the phone.

As the line went dead, I stood frozen in the quiet house for a moment, trying to make sense of this news. I was struck dumb, completely ignorant of the meaning behind her words, but feeling an intuitive dread at what lay ahead. Befuddled, I walked to my laptop and googled cystic fibrosis with my free hand. Disease. Genetic. Life expectancy. Fatal. No cure. I sat down abruptly. My ears started ringing, my stomach rolled, my grip on Caleb tightened. I found myself in the eye of a storm and I was instantly drowning.

I called my mom (who had Joshua with her) and barely got the words out. Over the next hour, as I waited for her to arrive, I found I couldn't put Caleb down. I couldn't sit down. I cradled my precious boy as I walked and cried and prayed and cried some more. Time stood still. It was as if everything in me fractured apart in that moment. Everything was different and I had no idea how to move forward. Later that night, as I had to share the news with Darrell, I couldn't shake the feeling that I was living in a nightmare. I kept wishing I would wake up and life would be back to Normal. Safe. Predictable.

By the end of that week, we had confirmation that, indeed, Caleb has two mutations for cystic fibrosis. However, we also learned that one of his mutations complicates the expression of cystic fibrosis symptoms. His case will most likely be a mild to moderate one, and further testing was necessary to determine whether he would actually have a diagnosis of cystic fibrosis or a related metabolic syndrome. In a very short amount of time, we tried to become experts on cystic fibrosis, reading everything we could find on the topic and asking endless questions at our clinic appointments. We had blood drawn for the in-depth genetic screening and had to wait nearly a month for the results.

In March we had a sweat test that confirmed elevated levels of sweat chloride, but did not give a conclusive diagnosis of CF (the "cut off" is 60 and Caleb's were 49 and 55). Caleb also had his first bout with Pseudomonas, a bacteria that exists everywhere in our environment, but is particularly problematic for people with cystic fibrosis. We began 30 days of breathing treatments (inhaled antibiotic) to eradicate the bacteria.

In April, we got the results of the additional genetic testing. It revealed that Caleb produces only 5% of the normal amount of CFTR (the chemical that allows for proper functioning of mucous membranes in our bodies). Because of this, Caleb was given an official diagnosis of pancreatic-sufficient cystic fibrosis. We were hoping for a higher rate of production for Caleb, but we expected this news due to the results of the sweat test. Our doctor told us there is no way to know for sure what Caleb's CF journey will look like. Some patients with his mutations spend a lot of time in the hospital while others show few symptoms through childhood. It is very much a "wait and see" situation (those of us who like to control everything don't do well with that). Caleb's digestive system will most likely not be affected, so he will not have to take enzymes to absorb nutrients from his food (what a blessing!).

By May we had eradicated the Pseudomonas. That was huge - the inhaled antibiotic they use to get rid of the bacteria has only be available to the wider CF population for the past 5 years or so. In June, we got our "vest" to help us with daily percussion treatments. Caleb likes the way the vest shakes his voice and "talks" through many of his treatments. We do two 15-minute treatments a day to help shake loose any mucous that might be forming in his lungs.

Since May we have had two more rounds of inhaled antibiotic (called TOBI) to get rid of Pseudomonas. Today's throat culture will hopefully reveal that the most recent round of TOBI successfully eradicated the Pseudomonas. If not, the doctor said that we will go on an every-other-month-for-a-year regimen to try to get rid of it completely. I'm just thankful there's a treatment available.

Caleb is doing remarkably well as he continues to grow and develop. It is such a joy to watch him discover the world around him. I am also amazed at how "normal" life can be, even in the face of all that we are worried about and dealing with. I am grateful for the healing that God has brought to my "mother's" heart, the heart that broke the day I learned my precious baby has this horrible disease. Every time Caleb smiles at me it is as if God is saying, "Be still. Know that I am God. And I am with you always."

There are still moments when I can't catch my breath. Moments when I am so sad, I don't think I'll ever be happy again. I have moments of intense anger ("why, God?") and moments of complete denial ("this cannot possibly be happening"). But these moments are coming more infrequently than they once did.

Replacing them are moments of deep, abiding joy. Moments when I know that Caleb is a deliberate gift from God, just as he is, and he will bless our lives in more ways than we can fathom. We have an opportunity to grow in our faith in God as we struggle to understand His purpose in our lives. It's amazing how, in the midst of this adversity, a few truths have become clear.

I know that God loves me. I know that He is always with me and will give me strength to face whatever the future holds. I know that He has a plan for my life, for Caleb's life, for the lives of all my precious family. This difficult season of life has been the vehicle through which God has brought us into a closer relationship with Him. Although we are walking through a valley, we have nothing to fear. The Lord, our God, is our strength. His provision is sufficient for the day.

I lift up my eyes to the hills-
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth. (Psalm 121:1 & 2)

1 comment:

  1. Well said, takes me back, made me cry again. My mothers heart would take your burden if I could because you are my precious child !!


CF Sucks

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