Saturday, September 23, 2017

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 this link to find out how you can help.

Dear Senator,

I wrote to you earlier this summer, asking you to oppose the American Health Care Act. I am writing again, asking you to vote "NO" on the Graham-Cassidy bill currently being considered by the Senate.

I am the mother of two boys, the youngest of whom has cystic fibrosis. CF is a progressive, genetic disease that affects primarily the digestive and respiratory systems. Currently, life expectancy is approximately forty years. Recent advances in the treatment of cystic fibrosis, however, have resulted in significant improvements in the health and longevity of those living with CF. My son Caleb is directly benefiting from one of these "miracle drugs", Kalydeco.

Keeping Caleb healthy is very expensive. The retail cost of Kalydeco alone is over $300,000 per year and that is only one medication he takes. In the two years Caleb has been on Kalydeco, we have seen a significant improvement in his health. He has missed fewer days of school and has not been in the hospital. My husband and I have been able to work without missing significant amounts of time on the job.

Without access to Kalydeco and other maintenance CF medications, our lives would look very different. Without quality and affordable health insurance, we would not be able to afford Kalydeco. Annual caps and lifetime limits will make it impossible for us to maintain preventative care for Caleb leading to increased illness, hospitalizations, lost time from school and work, and eventual early death.

It is not an exaggeration to say that a "yes" vote for this bill is a death sentence for my son.

Senator, I have been a political conservative all my adult life. Now I find myself forced to support liberal agenda I do not agree with in an attempt to preserve my son's right to LIFE, liberty, and the pursuit of happiness.

I beg you to find another way, a bi-partisan way, to fix what is not working in our current healthcare system. I agree that reform is needed. I am asking you to think of my son and thousands like him as you make decisions in the coming days and weeks. His life has just begun and as his mom, I want nothing more than to see him reach his full potential.

You hold Caleb's life in your hands and I am counting on you to protect him.

Sincerely,

Caleb's Mom




Sunday, August 13, 2017

As Yet Untitled (the beginning of a trilogy by Joshua)

I swear to you..... I didn't change a single word.

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Introduction

Family. It was as if the word never applied to me. I have no name, no identity. It has always been this way. I move from hospital to hospital, no knowing anything or anyone. It's like they dump me after my time is up, and it makes me believe that I'm nothing to anyone. But deep in my soul, I knew I was something.

I awoke from a trance-like state as the van came to a halt. Doctors in hazmat suits escorted me into the hospital. The stretcher I lay on rattled under my weight. I was brought to a large room, chairs surrounding me. In seconds, the men left and a doctor walked swiftly in. He ordered two nurses to bring me to a stage, television screens and banners on the back wall. Then he started yelling stage directions: "stage right, left, front, perfect!" His scarlet vest shined under the spotlight and then he snapped, echoing in the room. As if it was on cue, waves of reporters and cameramen flooded in, taking seats, jabbering among themselves.

The doctor picked up a small microphone and the crowd went silent. "Ladies and gentlemen of the press, I present our responsibility for the next two months, as assigned by the President of the United States of America," he boomed. A spotlight shone down onto my stretcher as I looked helplessly at the crowd.

"This child is radioactive, so we advise you to put on your ear loop masks inside your pamphlet given at the door," the doctor instructed. Everyone put on their masks. The doctor proceeded to give information about me, but then a reporter yelled, "He's a hazard to our children!" This outburst started a firestorm with reporters calling me "better off dead" or "a creation from hell."

I wanted to yell, but I couldn't. I felt weak, almost powerless against them. The I saw her, a little girl, probably my age, standing next to a nurse. She whispered to her and then left. I was taken out of the room and down a hallway. The nurse behind me instructed, "Put him to sleep. Use the heavy stuff, and make sure he doesn't remember... anything."

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Um..... wow.

Tuesday, June 13, 2017

Dear Senator

Y'all. I can't even. Healthcare reform is slowly killing me. Half the time I can't bring myself to turn on the news and half the time I can't look away. I get a knot in my stomach every time I see an email from the CF Foundation urging me to contact my representatives about the dire impact the proposed healthcare legislation will have on the CF community. It is easy to feel insignificant, to feel like my voice can not possibly be heard in the current stream of continual political nonsense. This is a battle I did not ask for and do not feel equipped to fight. But Caleb is counting on me.

Here is the letter I wrote to my senator today:

June 13, 2017

Dear Senator,

I am writing to you today to express my concerns about the proposed healthcare legislation currently begin considered by the Senate. My concerns are many and very personal.

My seven year old son Caleb was diagnosed with cystic fibrosis when he was three weeks old. As you may know, CF is a genetic condition that affects several body systems and has a current life expectancy of forty-one years. In the 1950’s children born with CF were not expected to survive long enough to attend elementary school; now people with CF are living into adulthood, having families and careers of their own. These incredible improvements are the direct result of improved access to preventative care and cutting-edge therapies.

There are only 30,000 people currently living with cystic fibrosis in the United States. As you can imagine, the financial cost of keeping Caleb healthy is very high. In fact, without insurance, my husband and I would be completely unable to cover even one year of Caleb’s medical bills with all of the savings (including retirement) we have been able to accumulate since entering the workforce almost twenty years ago. Even basic preventative care for Caleb would be impossible outside of health insurance and one hospital stay, an inevitability in the lives of most with CF, would bankrupt us.

Caleb is currently very healthy and we have tremendous hope for his future. Without access to his daily medications and treatments, however, CF becomes a death sentence. While Caleb remains healthy, my husband and I can both continue to work and Caleb can attend school. Changes in his access to quality healthcare threaten more than just his health.

I will be honest, Senator; I am afraid. I can’t imagine knowing it is possible to extend and improve the quality of my child’s life and not be able to afford it. High-risk pools for the chronically ill are not the answer; even the most generous subsidies would not make the cost of Caleb’s medical care within our reach. Lifetime limits scare me to death and I hope we never go back to the dark days of pre-existing conditions.

My husband and I are both educated professionals, working hard to support the economy of this great state. We are conscientious in our decision-making, save for the future, and try very hard to “play by the rules”. We did not ask for our child to arrive with these special needs. We pray for a cure, and in the mean-time, we do all we can to keep Caleb healthy.

Please consider carefully the decisions you are making in the coming days. Your actions will have the greatest impact on your most vulnerable constituents. We have no way of protecting our son’s access to affordable, quality healthcare. For that, we are counting on you.

Sincerely,

Caleb’s Mom

Tuesday, January 31, 2017

The 49-Hour Experiment

Last weekend we officially lost our minds. For years we resisted the temptation: we made excuses, we changed the subject, we bargained with our children, we ignored their pleas. Finally, we could take it no more. We threw in the towel, we gave up the ghost.

We got a dog.

Joshua first asked for a dog before he could form complete sentences. For a while we were able to put him off with all the usual excuses, but then Caleb came along and they ganged up on us. The pressure became so intense, we finally took leave of our senses and began the hunt for the perfect dog. We preferred to rescue a dog but had some limiting requirements: small, hypoallergenic, housebroken (because who has time for that?!), and good with kids. With these severe limitations, we felt pretty safe that such a dog does not exist.

We were wrong.

With the help of an adoption specialist at a local shelter, we located a dog that seemed to fit the bill. On Saturday we went to meet her. The shelter was crowded, small, and very smelly, so you know Joshua was ready to leave about 2.4 seconds after we arrived. We were escorted into a small room where we met a few dogs, including the one we came to see. While it was not love at first sight, we liked her enough to choose the "rent to own" option the shelter offers - pay a small fee, take the dog home for a two week trial-run, and then either complete the adoption or return the dog with no strings attached. In hindsight, I think we would have agreed to just about anything to escape the confines of that tiny, stinky, hot room.

We came home to prepare for our new addition. Beds, crates, toys, food, collar, leash, treats, blanket. Fellow shoppers at Petsmart congratulated us like we had just given birth. I had no idea there were so many different varieties of dog food to choose from and stood paralyzed on the dog food aisle until someone took pity on me and told me what to get.

MANY dollars later we were all set. I took the boys to get the dog from the foster family on Sunday afternoon around 4:00. We were continually amazed at her sweet disposition all evening. She played fetch, she sat by the door when she needed to go out, she was quiet and unobtrusive as we went about our evening treatments and chores. I couldn't believe our luck. When Darrell got home from work, we chuckled when she growled at him before quickly submitting to his doting attention. She curled up in my lap while we watched TV and slept in the chair in our room that night as if she always had done. I tried very hard to ignore the allergic itch in my nose and the tickle in the back of my throat. This dog was a keeper!

Monday was an exciting day of sharing our news with friends at school. We wondered if she would truly have no accidents during the day and we looked forward to her greeting us when we got home. Once again we marveled at her training as we swept the house looking for "surprises" and found none. I intentionally dismissed the return of the itch almost immediately upon entering the house. Our new dog seemed excited for her afternoon walk and eagerly explored the small park close to our house. We heard her ferocious bark for the first time when we encountered a neighbor, but felt only grateful that she was already protective of our family.

You can imagine my surprise when she tried to eat Caleb just a few hours later.

I was sitting in bed reading a book, our new wonder-dog curled in my lap, when Caleb came in the room to tell me goodnight. Without provocation, her lip curled back and she bared her teeth, the hackles rose all along her back, and she let out a vicious yelp that shocked us all into paralysis. Caleb's startled sock feet found no traction on our hardwood floors and as he went down, the dog launched herself out of my lap, snapping and snarling, fully intending to attack my second-born. As he scrambled to his feet, his terrified, blood-curdling scream bounced off the walls and broke the trance. Darrell grabbed Caleb while I grabbed the dog. Scolded, she instantly went silent but the damage was done.

From his room, Joshua said quietly, "I told you we shouldn't get a dog."

Thanks, kid.

Less than an hour later, she threatened the same behavior when Joshua came into our room while we were watching TV. Nope.

I thought it best to have her sleep in her kennel that night but she would have none of it. Darrell was worried about her being loose in the house while we were trying to sleep and I had to agree with him, but after a half-hour of whining, whimpering, and barking, I relented to let her sleep in the chair in our room. Darrell and the boys barricaded themselves in their rooms, leaving me alone with the dog. She wasn't content to sleep in the chair, however, and wound up sleeping curled against my back. Did I mention the dog snores? Loudly? Even the bathroom fan and a pillow over my head couldn't completely drown out the noise. I found it darkly hilarious that we were being held hostage in our own home by a small, four-legged despot. 

Caleb and I returned the dog to the foster parents' house (and their five other dogs) this afternoon around 5:00. The dog was happy to see her former doggie friends. Caleb was happy to say goodbye to the dog.

While texting the foster mom our sad news that the trial period had come to an abrupt end, I told Darrell how sad I was to waste the money on this experiment in pet ownership.

"Oh, no." said my wise husband. "That money was not wasted. That money was a worthwhile investment in the 'we don't need a dog' fund."

How right he is. We won't hear another word about getting a dog anytime soon. 

Parenting win. 


Wednesday, August 17, 2016

Sprinkle Family Update

So, so much has happened since my last post. Some good; some bad; and some very, very ugly.

In May we had our most spectacular Great Strides event yet. The Atlanta Great Strides raised more than $2 million! I am still in awe of the $25,000+ our team raised and the overwhelming number of friends and family who turned out to support us. Wow! Great Strides is my favorite day of the year and I am without the words to express my gratitude to all of our supporters.

We had, hands down, the best summer EVER. In June we traveled to St. Augustine Beach for a week of family vacation. We had an awesome time! It was Caleb's first stay in a hotel and I'm not sure what impressed him more - the ocean view or the hotel amenities! My favorite moment was watching the sun rise on the beach. The glory of God's creation at the dawn of a new day never ceases to take my breath away.

Caleb went to the emergency room twice this summer - once for croup (he couldn't breathe) and once for stitches (he needed eleven). I swear, that boy is determined to turn all my hairs white. The good news? He hasn't been on antibiotics for respiratory congestion since early February. That's SIX months, my friends. He has never gone that long in his life. The full dose of Kalydeco appears to be having a significant, positive impact on his overall health. Here's hoping the streak continues!!

Just this past weekend Joshua was baptized at our church, showing the world his intent to follow Jesus all the days of his life. I am so proud of him. If he could go directly to the mission field today I think he would. His heart for people and his passion for justice are enviable. I can't wait to see what God has in store for him!

Still recovering from Sunday's extreme "high" we find ourselves in something of a valley today. After visiting with our pediatrician this morning, we are now exploring a probable diagnosis of neurofibromatosis (type 1) for Joshua. Although his symptoms are very mild, he does meet at least two of the diagnostic criteria, all that is necessary for an official diagnosis. We have been referred to the NF clinic here in Atlanta for further testing; the earliest we can get an appointment is April 2017. NF is neither life-threatening nor life-shortening, but a diagnosis will allow for close following and early intervention when (if) symptoms arise. Puberty can also impact the expression of symptoms. As we navigate this next year with him, I covet your prayers.

We know that all things work together for good, for those who love the Lord and are called to his purpose. We also know that we can rejoice when trials come our way because the Father is already in tomorrow and he knows how this story ends. He has carried us through the valley before; we have faith that he will do it again.

Thank you for your continued prayers, love, and support. We are truly grateful.

Click here for more information about neurofibromatosis.

Sunday, March 20, 2016

Reality Check

Last week I was invited to participate in a lecture at Emory University on the topic of cystic fibrosis. Dr. Nael McCarty, head of the McCarty Lab at Emory and my favorite "miracle maker," spoke for two hours on the mechanics of CF, it effects on the body, and the stark realities of its degenerative progression leading to death in early adulthood. At the end of his presentation, I shared my perspective as a CF mom, focusing on initial reactions and early experiences. Telling our story is always difficult and I am usually prepared for the emotional fallout.

Usually.

Hearing in cold, clinical terms the realities of this disease, I was brought low. CF negatively impacts SO MANY functions in the body it is a miracle our loved ones survive as long as they do. As I listened to Dr. McCarty's words, I could only see Caleb's face. My precious son, slowly dying from the effects of this vicious disease. We still lose too many too early and I can do so little to stop it.

I am grateful for Dr. McCarty's invitation to speak from a mother's heart. He understands so well the importance of putting a face on this work and I will gladly speak to any group he invites me to join in the future. As hard as it sometimes is, I know the difference telling our story can make.

I cannot say "thank you" enough to Dr. McCarty, his team of scientists, and countless others working tirelessly to help us battle this disease. I am overcome with gratitude when I think about the people who have chosen to engage their considerable intellectual gifts in this fight. Their work fuels my hope for Caleb's future. As I toured Dr. McCarty's lab and heard about all the incredible things happening there, I was reminded of how far we've come. Breakthroughs are happening all the time and new drugs are changing the progression of the disease. I left Emory's campus feeling hopeful, encouraged, and determined.

We're going to win. You can help. Click here.


Friday, January 29, 2016

Quick Clinic Update

I am so grateful for your outpouring of love and concern for Caleb and our family this week. Here's a quick update from yesterday's clinic appointment.

Overall, the news was good. Caleb grew a little taller, but his weight stayed the same. After several unsuccessful attempts, he finally did well on his pulmonary function test (a test that requires some serious technique!) Blood work was traumatic as usual, but over quickly thanks to the expertise and impressive focus of the nurse. Results of his liver function test and throat culture will be ready sometime next week. We're praying for good results on both!

Because Caleb is now six, he will begin taking the adult dose of Kalydeco (twice the dose he has been taking). We will continue to monitor his liver function with the increase, although we are not expecting any problems. He will also add Prevacid daily to address what appears to be mild reflux (and may be contributing to his periodic cough).

We are thrilled with the results of his chest CT. Lack of bronchiectasis is wonderful at his age. His cough has completely cleared and we have ten days left on Augmentin. If he develops another cough within the next two to three months, we will most likely proceed with the planned admission to determine what, if anything, is growing in his lungs that might be causing the cough. We are prayerful this will not be necessary, but we know that with CF, a hospital stay of this sort is inevitable. We were hoping Caleb would be older before his first admission, but ultimately want him to have the very best of care. We trust our doctors to guide us in the right direction.

Thank you for your prayers, support, love and encouragement. You have no idea how much we appreciate you! Ephesians 3:20-21

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...