Tuesday, November 10, 2015

Not a Cure

Kalydeco is not a cure.

Don't get me wrong. I am INCREDIBLY grateful for Kalydeco. To be one of the first few mutations to benefit from the cutting-edge science behind this wonder-drug is beyond words. We hope that Kalydeco will prove to be a "pause button" on the progression of Caleb's disease and will keep him healthy for the cure that we believe is in his future.

Kalydeco is not that cure.

How do I know this?

Because we still do multiple treatments every day. We still go to clinic quarterly. We still wait with baited breath for test results. We still panic when something new shows up that we've never seen before. We still treat infections with large doses of strong antibiotics. We still fear a prolonged hospital stay is inevitable. We still wake up in the middle of the night, hearts pounding, trying to remember the nightmare that woke us and realizing it's the reality of our "new normal" that jolted us from a sound sleep. We still fear germs lurking on every surface. We still crave the safety of home and dread the uncertainty of the wild, wide world. We still paste on a smile and pretend that everything is fine when in reality, some days we are barely holding it together. We still look into the eyes of our five year old son and grieve for the day when he realizes....

I can tell you a lot about the science behind Kalydeco. I can explain how it is (hopefully) working inside Caleb's little body, why the potential benefits to his longevity far outweigh the unknown risks. I can tell you all about new developments and exciting new research and why I believe the cure is a real possibility in his lifetime.

But when it's quiet and dark, and my thoughts spiral out of control, I am still sometimes so afraid I can't breathe. I still wonder how I'll ever make it through another week, another month, another year of this "not knowing." I still ask why this has to be our story.

And I still long for the cure, for the freedom from these fearful realities, with all of my heart.

Monday, September 7, 2015

An Open Letter to CF

Dear CF,

You suck.

I have never hated anything as much as I hate you.

You ruin everything. Planning a fun outing with the family? Not without worrying every second about the germs lurking on every surface, ready to send your precious one to the hospital.

Weekend getaway with couple-friends? Not without a midnight run to the 24-hour pharmacy for steroids to calm a tight, scary cough.

Fundraising event with fun friends on a holiday weekend? Sorry. You'll have to cancel that in the middle of the night. Instead, you'll be steaming up a bathroom and trying to breathe.

Hate hospitals? Well, you're going to spend a lot of time in them.... drawing blood, undergoing tests, sitting and waiting. And every time your kid sneezes, you'll worry that you're headed there for an extended stay.

Excited about starting Kindergarten? First family vacation to the beach? Invited to a birthday party? Holiday gatherings with friends and family? Want to play on the playground at Chick fil a like a normal kid?

Nope. Nope. Nope.

Instead, you threaten at every turn to choke us with fear. You conspire to keep us home-bound, terrified, and isolated. You steal, you kill, you destroy.

Well, I've had it with you. You are not welcome here. And I am going to do everything in my power to send you back to the pits of hell where you belong. One day very soon, you will join the list of diseases that once struck terror into the hearts of parents and now only whimper with remembered power.

With every breath in my body, I will fight the fear you delight in. I will instead look forward to the day when we, the CF Community, deal you a death-blow. Until that glorious day arrives, I will continue to stand back up when you've knocked me down. Bloodied and beaten, I will continue to fight. I will continue to make plans. I will continue to celebrate the milestones of life. I will NOT be conquered by you. I will NOT let you take control of our lives.

Your days are numbered, CF. We're taking you down.

Sincerely,

Caleb's Warrior Mom

Thursday, July 23, 2015

Test Results and Summer's End

The results are in - Caleb's liver function is normal and stable after three months on Kalydeco. Hallelujah! His most recent throat culture was clear of scary CF bugs, another cause for celebration! We added Flovent to his daily regimen in May and then lowered the dose as springtime allergies abated. He seems to be tolerating these new medicines very well and has been healthy all summer.

Our family took several mini-vacations this summer and in a lot of ways it felt like the first "real" summer vacation since Caleb was born. We visited with family and caught up with old friends. We stayed up late. We binge-watched Netflix and chased lightning bugs. Caleb went to his first in-the-theater movie. Joshua learned to play golf. Swimming was the favorite past-time, no matter where we were. 

As summer comes to a close, I find myself noticing subtle differences in my children. It is as if the fast-forward button has suddenly been pushed and I am breathless with the speed at which they are growing. Parenting is not an easy job, but it is worth every difficult moment. In times of quiet reflection, I am overwhelmed with gratitude for this life I get to live. Despite all of the economic and political unrest in our world, I can't help but believe that our future is bright and full of promise. Every new encounter brings with it an opportunity for kindness, encouragement, and hope. 

I choose hope.






Friday, April 17, 2015

The Next Chapter

Today is a big day - a day I have anticipated for so long, I can hardly believe it has finally arrived.


It's strange how something so small can be so significant. Yesterday as I arranged for the delivery of the contents of this package, I found myself in tears. For years I followed the development of this "game-changing" drug very closely and I prayed that it might someday benefit Caleb. Even in the darkest moments when I couldn't see my way forward, I heard a whisper of hope, "hold on...."



I must have stared at this box for a solid 20 minutes before I actually opened it. My hands shook. It was like unwrapping the most precious Christmas present I could possibly receive.



Caleb's dose of Kalydeco comes in packets of granules. We mixed them into a teaspoon of white grape juice and Caleb took it in one swallow. Each dose must be followed by a high-fat snack (to aid the absorption of the medicine), so tonight we chose whole-milk blueberry yogurt (one of Caleb's favorites).



I had tears in my eyes watching him take his first dose of Kalydeco. We will never know what his health would have been like without it, but we took a huge leap forward in slowing the progression of his disease. This drug will help him stay healthier longer and Lord willing, will see him safely to the cure. Tonight we punched cystic fibrosis right in the face.

Kalydeco would not exist without the CF Foundation's commitment to investing in research and development of new drug therapies. A cure for cystic fibrosis now seems more possible than ever, thanks in large part to donors like you. YOU are part of the miracle. YOU are saving my son's life and the lives of all who are living with this disease. There are simply no words to express my gratitude. Every milestone is precious, and it seems more certain every day that Caleb will live to experience them all.

Thank you.

Thank you thank you thank you thank you thank you.

If you would like to support the efforts of the Cystic Fibrosis Foundation, please follow this link to learn more.


Saturday, February 14, 2015

Back to the Start

Life is a collection of moments. Events that become treasured memories. Experiences that broaden your horizons. Encounters that change your outlook. Disappointments that break your heart. Tragedies that touch your soul. Each moment is a gift, in its own way, no matter how painful. "For in my deepest wound I saw Your glory, and it dazzled me." (St. Augustine)

The afternoon of February 15, 2010, just after one o'clock, is once such moment in my life. I can remember it with crystal clarity all these years later; I suspect that memory will always be razor-sharp. My life changed in that instant. It took less than 30 seconds to hear the words, "Your son's newborn screening came back positive for cystic fibrosis." I can still remember exactly how I felt - as if I had been punched in the stomach and temporarily lost the ability to breathe. Time stood completely still.

It's weird the thoughts that run through your mind as you're grappling to digest such devastating news. I sincerely wondered how people could still be living their lives like nothing happened. I could not process the fact that television shows still aired and people still went to the grocery store and the roads were still full of cars. Laughter fell like discordant music on my ears. I no longer enjoyed activities I once loved. I craved solitude but couldn't stand to be alone. I longed to pour out my broken heart but had no words.

The darkest hour is just before dawn. Time heals all wounds. Courage is not always a roar.

Be still and know that I am God.

"I can't" eventually gave way to "I will." Praise the Lord, I found my way. I found my voice. I found my cause. I found my joy.

On this anniversary of that dark day I find myself feeling hopeful rather than sorrowful. Joyful instead of brokenhearted. I am grateful for this journey, for the thorns that make us all-the-more appreciative of the roses. I am humbled by the healing we have experienced in these past five years, both physically and emotionally. I am strengthened by the continual outpouring of support, encouragement, and love of friends and family.

Beauty from ashes, indeed.

Thursday, January 8, 2015

Unbelievable

I have learned to expect the unexpected during our CF clinic visits. I suppose that is why I brace myself for days in advance of these appointments, slowly becoming more anxious and more agitated. Something surprising almost always happens, and the surprise is usually not a good one. It's kind of like cranking the handle on a Jack-in-the-Box, waiting for the creepy looking clown to pop out. You know it's coming, and you cringe in anticipation of the moment you will inevitably flinch. It never fails.

Today was no different in the surprise department. Today's surprise, however, was not bad. It was very, very good. Perhaps even too good to be true. I'm still not sure how I feel about the news we received today. I guess it will take some time to process.

As many of you know, Kalydeco was recently approved by the FDA for use with CFers having at least one copy of R117h. Based on previous conversations with doctors at the CF Clinic, I was under the impression Caleb would not be considered for this drug because he is doing so well and the long-term effects of Kalydeco are still somewhat unknown.

I was wrong.

When Caleb turns six, he will begin taking Kalydeco. The benefits to him far outweigh the potential risks, and he will start using Kalydeco as soon as he is old enough (right now, it is only approved for ages six and up). There is a possibility he'll start sooner; a safety study is underway right now on younger kids.

Kalydeco, along with regular daily treatments, is significantly slowing the progression of CF in people for whom it has been approved. It makes total sense for Caleb to begin using it as soon as possible, before the disease has an opportunity to create permanent damage. Even though Caleb appears to be completely healthy on the outside, his most recent chest x-rays show some evidence of disease progression. It seems to be in his best interest to begin as soon as possible and delay any further damage. There are still so many unknowns, so many unanswered questions, but so many, many, many benefits. It boggles my mind.

Any words I could use to describe how thrilled I am with this news would be woefully inadequate. I am also scared about long-term side-effects we may know nothing about. I can't believe this is happening. It is a very real possibility this will have a life-changing positive impact on Caleb's health. For some reason, I'm unable to breathe the sigh of relief I thought would come in this moment. 

Thank you for all of your love, support, prayers, words of encouragement, and hugs. I have needed every one. I will continue to need them as we travel down this new "leg" of our CF journey. Please continue to pray for Caleb, for the wisdom of the people making important decisions regarding his health, and for the rest of our family as we navigate these uncharted waters. It's scary. It's exhilarating. It's unbelievable.

Graham-Cassidy

Here we go again. PLEASE add your voice to mine and help us defeat this mockery of a solution to our national healthcare problems. Follow th...