Cystic Fibrosis (CF) does not define who we are, but it is an important part of our lives. By sharing our story, I hope to raise awareness and connect with others whose lives have been touched by CF.

Friday, March 28, 2014

A Surprise and a Thank You

Today I found a surprise waiting in my inbox.

The surprise was in the form of an email written by Kellie, who is the Associate Executive Director of the Peoria branch of the Greater Illinois Chapter of the Cystic Fibrosis Foundation. I have known Kellie since I participated in my first Great Strides walk back in 2004 when a great group of friends decided to get together and raise money for Alex and Cystic Fibrosis. They called our team Alex's Angels, and I was so surprised and touched by their compassion, I cried when I found out about it. That was one of the first of many acts of kindness we experienced after Alex was diagnosed.

Since that first fundraising experience, I've been amazed and humbled by the generosity of our family, friends and strangers who have donated money repeatedly over the years to help fund research, care centers, and the creation of new drugs--all of which help to better the lives of those living with this disease. And the ultimate hope? A CURE. In my mind that equals a long and healthy life. A life everyone deserves.

I was surprised and humbled again today when I read Kellie's email. She was writing to let me know that the Foundation had received an anonymous, sizable donation in Alex's name, and she was going to register our team and transfer it over to Alex's Angels. She mentioned that she was stunned when she saw it and wanted to let me know in case I wasn't aware.

I was not aware, and the news stunned me too. Once again, I was overcome with wonder and gratitude for the compassion and generosity of people, in particular this Anonymous Donor.

And then, in the next email, Kellie shared the amount.

$10,000.

I felt my eyes widen as I stared at the words on the screen.

About this time, I got a phone call from my husband, Steve. I had forwarded him Kellie's original email, and he immediately called me after he read it. He too was stunned, and then I told him the amount. We were both speechless.

We are still wrapping our minds around the beauty of this act of kindness and have finally found the words to say this:

THANK YOU.

Thank you for your selflessness and generosity. Thank you for your love for us, for Alex, and for our family. Thank you for your action. You have helped many. You have renewed my faith in the human spirit. I love to be reminded of the goodness inside each one of us.

And I will end by saying this: $10,000 is a lot of money. But so is $1. The act of giving--whether of your time or your talents or your hard-earned dollars--is still an act of giving. And I thank you, Anonymous Donor, and all of you who have helped and supported us and donated to the Cystic Fibrosis Foundation over the years.

You are changing lives.


Alex's Angels 2004--Our fundraising efforts were a success, and when we walked on that fall day in our matching Alex's Angels t-shirts, he toddled along after us wearing his own.


Alex climbing on the playground at the Great Strides walk in 2011.



At his last CF Clinic appointment in early March, Alex entertained himself while we waited. Because of the possible transfer of germs, each patient gets a stethoscope that stays in the room the entire visit. Alex also has to put on a mask when he arrives to protect himself and other patients from potentially dangerous germs that can live in the lungs of those who have CF. He can take the mask off once we enter our room but has to wear it in common areas of the clinic.

Donate to Alex's Angels

Wednesday, November 30, 2011

A Story

Once again, my goal to become a better blogger has failed. Over the past few months, several post ideas have come to mind, but I keep filing them away for a day when I have more time.

Time to think. Time to process. Time to lose myself in words.

Well. Here it is. 12:01 AM. I'm sitting here at my computer in an almost quiet house. I hear the soft hum of the computer, the creaks of my house settling into the night, and the occasional car motoring down our street. And...snoring. From two rooms away. But don't tell my husband I told you so.

I want to share a story with you, dear reader. And this story, I must confess, makes me very sad.

A few weeks ago, my husband (the snorer) got up as he usually does and came downstairs to watch the news. As he was enjoying a cup of freshly brewed Folgers, a news story caught his interest. So worthy was this news story, he re-wound the broadcast and recorded it for me (oh, the modern convenience of DVR). He was quite excited to tell me about it when, at the last possible moment, I convinced my brain to get my body out of bed, and I said, with as much enthusiasm as I can muster that early in the morning when my voice doesn't want to work, "Yes! I want to watch that. Thanks for recording it for me."

Later that afternoon, he called home from work to see if I'd watched the 2 minute news clip yet. No. I hadn't. Yes, I wanted to. I'd just been busy with other things (Thing One: 2 1/2  year old Evan and Thing Two: 11 month old Jude).

Finally, after I'd picked Alex, my 8 year old, and a friend of his up from school, and in the midst of after-school chaos, my husband came home from work and cued up the news clip. Alex was searching for a Wii remote and talking to his friend (who was in the next room) about whether or not to play Lego Star Wars or Lego Harry Potter. And then my husband pressed play, and after the first few words, I realized why this clip was so important.

The news story was about a new drug for Cystic Fibrosis that addresses the underlying cause of the disease. Phase 3 trials have been completed with positive results, and as  Robert Beall, the president and CEO of the Cystic Fibrosis Foundation remarked, "This is a big deal."

It was about this time I noticed Alex too had stopped what he was doing and was listening very intently to the story. I glanced at him every other moment, wondering what he was thinking, and wondering to myself if it was ok for him to watch this. In a few seconds, I decided that it was. It was great news. And he was old enough now to understand more about it. In fact, he deserved to know. And then Robin Meade, bless her heart, said this,

"Most people with Cystic Fibrosis do not live past the age of 40."

I froze. And then, I remembered my heart was still beating and had not plummeted straight out of my chest. My eyes met my husband's, and we exchanged the same wide-eyed looks as he mouthed the word, "sorry." But it was not his fault. Then I glanced at Alex. And he seemed...fine. The news clip was over at that point, and he continued searching for the Wii remote and talking to his friend in the next room. My husband got up to attend to someone's need, and I remained, slightly shell-shocked, on the couch. About 30 seconds later, in the middle of readying his found Wii remote, Alex turned to me and said, matter of fact,

"So, I'm gonna die before I'm 40?"

My heart plummeted a second time. I searched my brain for how to respond. Matter of fact though he was, it was still a question. So I stammered out,

"No. We don't know that."

And that was that. I realized, even in my alarmed state, that this moment, what with the impending Lego Star Wars Battle, was not the time for an in-depth discussion. I'd save that for later.

I share this story not to make you sad but to make you aware. For about 10 seconds I was furious with Robin Meade for making my son conscious of his mortality and, according to statistics, his probable cause of death. We'd crossed a line, and we could not go back. How dare she and Headline News say such things on air! Doesn't she realize people with CF might be watching!

And then, in a moment of realization, I forgave Robin Meade and Headline News. After all, she was just doing her job.

Most people know very little, if anything, about Cystic Fibrosis. And while Robin Meade's spin on the statistics might not have been what I wanted my son to hear, people need to know it. They need to know why this new drug is important. They need to know why the CF Foundation raises money for research. They need to know that the average age of people with CF is 38.5, which means YES: many people with CF die before they're 40. And they need to know what daily life is like for people with this disease.

This story is one example. Thanks for allowing me to share. 

One final note: Just 60 years ago, in the 1950's, few people with CF lived to attend elementary school. My son is 8 years old and enjoying his 3rd grade year. His favorite subjects are math and science, and he is an avid reader. He's recently begun learning Karate and likes playing video games with friends.

None of this would be possible without the Cystic Fibrosis Foundation and the millions of dollars and the people who have donated and worked through the years to find new and better treatments for CF. And maybe one day a cure.

Certainly, hope lies in that.




Tuesday, September 6, 2011

Mom(me) Moments

I'm a mom. And I've discovered there are only two places a mom can really think. Number One: in the shower. Number Two: in the car. This is assuming the mom is alone in both locations. Because being a mom means that no place is one's own. Not even the shower. Small fists bang on bathroom doors, 8 year olds waltz in to demand "Where's my library book?" and "I can't find my shoes!" followed by "Yes, I looked!" Bathroom time is the place to learn about your child's latest LEGO creation and to discover which level of Wii Bowling he has just completed. And if you're as fortunate as me (and you have only one bathroom in the house)...well let's just say, my bathroom can be a very SHARED space!

But sometimes, even a mom finds a moment to shower in peace. And T-H-I-N-K. This post revolves around an idea I had several months ago while doing just that. I had been thinking about how I had neglected my blog. My poor, sad, 3-entry blog that I started approximately 2 years ago. What a terrible blogger I am!  I was considering the reasons why. I was busy. I was pregnant. I was nauseous. I was tired. And then: I was busy. I had a newborn. I had a 19 month old. I had a 7 year old. I was tired. Also I felt self-important sharing my concerns about my eldest son's journey with CF and about life in general to whomever chose to read my crazy ramblings. Who wants to hear me complain?

I could think of a lot of reasons NOT to blog. And then an idea popped into my sudsy, wet head.

What if I created a "sister blog" to "Finding Hope" where I shared whatever funny, sad, inspiring, depressing moment I experienced as a mom that day AND invited other moms to participate. So it wasn't just me complaining...I mean sharing (!). Together with my friends, we could create this lovely shared space (kinda like the bathroom--Ha!) in which we divulge the moments that make up our days.

I knew this idea was probably not unique. I had to convince myself NOT to search for other mommy moment blogs out there. Because if I thought it had already been done, I'd be less likely to do it.

So here goes. I invite you, reader, to send me whatever mom(me) moment you'd like to share--and to do so on as (ir)regular a basis as you'd like. No pressure. It does not need to be perfect. I'll post it.

Being a mom is hard work. And sometimes, like my poor neglected blog, we moms neglect the very important ME in MOMMY. So my friends, let's do a little something for ourselves. Let's remember that even in our toughest moments, we are never alone.

I'm ready to learn, laugh, and cry with you all!

Thanks for reading,

Andi


Tuesday, January 19, 2010

Crazy Days Part 1: The Morning Mad Dash

I’m attempting to get back on the blogging track. When I started this blog, I really felt inspired to share my stories. And then the lazy days of summer turned into the busy days of fall i.e. the school year. My days go something like this:


The Morning Mad Dash

6:10 AM …beep, beep, beep, beep. The dreaded alarm. Once upon a time, I popped out of bed at that sound and happily began my day. That was when my worst fear was missing the bus. Nowadays, I am the bus, and I’m happy if I get my son to school before the janitor locks the doors. For the record, we’ve only been officially tardy twice in the past year and a half. That requires signing in at the office and does NOT make my anxiety-prone son a happy camper. On those days, I felt like the worst mom ever. If only I could harness that guilt and train it to slap me in the face every time I reached for the snooze button, maybe I’d snooze less often.

The goal is to be up and moving by 6:30 AM, so that we can get Alex’s treatments going. Fortunately Alex IS a morning person and is usually trying to get me out of bed between 6:10 and 6:30 AM. When I finally make my way downstairs, I hook Alex up to his VEST. The VEST is a form chest physical therapy or CPT, which Alex is required to do twice a day for 30 minutes and more often if he’s having any respiratory symptoms. Next, I get his breathing treatments ready. He starts with Albuterol, which is a bronchodilator. Alex uses a nebulizer and breathes in the mist, which lasts about 10 minutes. Next up is Pulmozyme, a drug created specifically for CF which acts like scissors, cutting up the DNA of the thick mucus & secretions the white blood cells leave in CF lungs. Pulmozyme lasts about 5-7 minutes. The last nebulizer is TOBI, an inhaled form of Tobramycin, which was also specifically created for CF. TOBI is used to kill Pseudomonas aeruginosa, which is a bacteria that can get in CF lungs and do some major damage if left untreated. Alex cultured Pseudomonas in December of 2007 and has been doing the TOBI rotation ever since. (TOBI is done 28 days on, 28 days off until at least 2 cultures have come back as “normal flora.”) Alex has gone off TOBI twice, but Pseudomonas has always shown up in his cultures within a couple of months. TOBI is the longest nebulizer, lasting about 20 minutes.

While Alex does his treatments, he usually watches a tv show or plays a video game. I used to always sit with him, but now, I often do other things, periodically interjecting, “Take DEEP breaths!” or “Keep Breathing!” Alex often “forgets to breath,” and I guess I think my interjections are helpful reminders. I should also note that the VEST and nebulizers are very noisy. So if Alex is watching tv, the volume is cranked up so as to be heard above all the noise. Then add me yelling from the next room every so often…you get the picture. Our mornings are very LOUD!

My “other things” include packing Alex’s lunch (if I was one of those well-organized moms, I would do that the night before…), get my 9 month old out of bed (He’s almost always smiling and happy. Such a patient boy!), change him, make & feed him a bottle, and settle him with some toys. At some point, I also throw some clothes on myself and get ready for the day!

The order of CF treatments is important, and our doctor and CF Care Team give us guidelines on how to complete these. Recently we were told that, in an ideal world, the order should be Albuterol (10 min), Pulmozyme (7 min), and then wait 30 minutes for the Pulmozyme to do it’s work. Next the VEST (30 min), and finally TOBI (20 min). That would require 1 hour and 40 minutes! Who has that kind of time?! In real life, it is ok to do the VEST while doing some of the breathing treatments (Albuterol and Pulmozyme). We try to wait and do TOBI all by itself, but if we’re short on time, we double up on that too, so Alex’s morning treatments end up taking 30-50 minutes, depending on whether or not we’re doing TOBI.

On a good day, Alex begins eating breakfast around 7:00-7:15 AM. With breakfast (and every meal) he takes pancreatic enzyme replacements or “enzymes.” These come in capsule form, and he takes 4 with meals and 3 with snacks. Since Alex cannot yet swallow pills, we break the capsules open and pour the “beads” in applesauce, which he eats, no problem. He has done this practically his whole life, so it’s second nature for him now. There was a time when he was 2 that he refused to eat his enzymes…but that’s another story! At breakfast, I also give his other meds: 1 Prevacid (to help reduce stomach acid and help the enzymes work better), 1 Singulair (to help with Alex’s reactive airways, which is not necessarily related to CF), ½ capful of Miralax (to help prevent intestinal blockage, which can be a problem for CF due to the malabsorption of fat & protein), and Azithromycin, (a maintenance dose of antibiotic given on Monday, Wednesday, and Friday only. Studies have shown that this drug helps keep Pseudomonas under control. No one really knows why.)

After breakfast, Alex brushes his teeth and gets dressed. With any luck, we’re all bundled up, Alex with his backpack on & lunch in hand, and out the door by 8:00 AM.

School here we come!

(Who knew I had so much to say about our crazy mornings? Look for Part 2 another day…)

Tuesday, August 4, 2009

Alex and His Diagnosis

When I was a little girl, I remember thinking my life was good, too good, in fact. Nothing terrible happened to me. I enjoyed a fun childhood, and with the exception of some typical teen-aged confidence issues, I cruised into young adulthood carefree and happy. I always felt that God was preparing me for what was to come. And as crazy as this sounds, even as a 10 year old, I knew my trials in life would come later.


*****

When the nurses placed my newborn son into my arms on July 26, 2003, I cried blissful tears of joy. He was soft and smooth and sweet, and I recognized his cute little nose from the sonogram pictures. Immediately, I thought, "Who are you, what is your name?" I'm a last-minute person, and even though my husband, Steve, and I had narrowed down our name choices, I was concerned about what we should call him. Within a few minutes, Steve and I decided to name him Alexander Michael, Alex for short. It was the perfect name for our perfect little boy.

Two days later, we took Alex home to our apartment and began learning how to be a family of three. I was breast-feeding and was constantly concerned about whether or not Alex was getting enough to eat. Alex was also jaundiced, and at the end of the first week, he spent 3 days doing at-home therapy with a bili light. The jaundice cleared, and we continued caring for our little boy...feeding, changing diapers, bathing, burping, feeding again, changing more diapers...and loving our boy more every minute.

At birth, Alex weighed 6lbs 1oz. When we brought him home from the hospital, he had lost some weight, as breast-fed babies often do. By 2 weeks, 5 days, he had made it back up to his birth weight, and sometime between this check-up and his 2 month check-up, I became increasingly worried about the rate of Alex's weight gain. I would weigh myself on our scale at home and then weigh myself with Alex and subtract the difference. Alex was gaining very slowly. It seemed every time I went out, people asked how much he weighed and seemed surprised at the answer I gave. I began to be self-conscious about this and started avoiding public places. I knew Alex wasn't gaining weight quickly, and I didn't know what to do about it. I shared my concerns with the doctor, and he assured me that the signs I was noticing (slow weight gain, odd consistency & color of stools) was all in the range of normal. Alex was eating like a champ, and I continued to feed him whenever he was hungry for as long as he wanted to nurse, which was about every 2-3 hours for 45 minutes.

At Alex's 2 month check-up, I was delighted when the nurse weighed him and recorded the result: 10 lbs! I felt relieved. (Looking back, there is some discrepancy over the accuracy of this, as the nurse weighed him twice and wrote down the greater weight.)

As his 4 month check-up approached, I grew more and more concerned. My weight checks at home showed Alex weighing 8 lbs, and I thought, "this can't be right." But it was. Alex weighed 8 lbs 12 oz at his 4 month check-up. The doctor was finally concerned. He asked me questions about our feedings. I explained how often and how long Alex nursed and told him that when I pumped, I generally produced about 4 oz of breast milk. He was surprised and thought that seemed an adequate quantity but instructed me to start supplementing with formula anyway.

I called up my mom. She's an RN, and I always turn to her for medical advice. She had been concerned about Alex's slow weight gain and confided that Cystic Fibrosis (CF)* had been in the back of her mind. CF had been lurking in the back of my mind too. I have a first cousin with CF, which I knew increased my chances of being a carrier of the disorder. My husband, however, has no family history of CF. My mom advised me to call my doctor, explain the family connection, and ask him to order the test for CF. I did. The doctor brushed my concerns aside, stating that a first cousin wasn't a close enough connection. At this point, it was clear to me that he knew very little about Cystic Fibrosis.

I called my mom again. She said, "Andi, you have to call him up and push for this test." I did, and he finally agreed, stating he really didn't think it was necessary.

On December 4, 2003, my husband, mom, and I took Alex to have a sweat test** at a CF Care Center 70 miles from our home. The lab technician rubbed an enzyme on Alex's forearm to stimulate his sweat glands. Alex's arm began sweating in about a 1 inch by 1 inch circular area of his skin. The lab technician gathered the sweat in a tiny coil of tubing, which was maybe a centimeter in diameter.

Later that afternoon, we received a call from Alex's pediatrician stating that the sweat test showed a high quantity of salt, which was a positive diagnosis for Cystic Fibrosis. He was apologetic and explained that Alex's symptoms were nothing like he'd seen when he cared for CF kids while in residency in the '80's. As frustrating as the process had been, I didn't blame him. No one, not even a doctor, can know everything.

When I got off the phone, I told my husband. I'm not exactly sure what I said, but we hugged each other tightly and cried.

Not long after this, a nurse from the CF Care Center called to set up an appointment for Alex's first visit and to discuss his diagnosis. This was my first experience with the CF clinic we now attend, and it could not have been more positive. The nurse was wonderful. She explained everything so thoroughly, which was so comforting.

Six days later, Alex began taking pancreatic enzyme replacements or "enzymes" to help him digest food and absorb the nutrients from it. Because CF causes the body to produce a thick, sticky mucus, the ducts of Alex's pancreas are blocked, and the enzymes that break down food cannot get through. This is why Alex was not gaining weight. After two days of taking enzymes, Alex slept through the night for the first time. He was 4 1/2 months old. I was so relieved that my little boy finally felt satisfied and comfortable.

I realize now that Alex's diagnosis was a critical turning point in our lives. We were saddened by it--this isn't the life we wanted for our little boy. But we also felt a great sense of relief. We finally knew why our boy wasn't growing, and we could do something about it. I began to read and learn as much as I could about CF, I asked questions, and I followed the instructions our CF Care Team gave us. I still do. In fact, I'm a bit obsessive about it. When a doctor tells you that every treatment you do adds a day to your child's life, you begin to view life differently. You dig down deep, and you find strength you didn't know you had.

Is this difficult? Yes.

Is it painful? Yes.

Is it worth it? Yes.

God called me to be a wife. He called me to be a mother, and more specifically, He called me to be a mother to a child with CF. It took me a while to realize that these vocations are all gifts. I have been prepared to walk this path. With His help, I can succeed.


* What is Cystic Fibrosis?

"Cystic fibrosis (CF) is a life-shortening, inherited disorder that affects the way in which salt and water move into and out of the body's cells. The most important effects of this problem are in the lungs and the digestive system (especially the pancreas), where thick mucus blocks the small tubes and ducts. The lung problem can lead to progressive blockage, infection, and lung damage, and even death if there is too much damage, while the pancreatic blockage causes poor digestion and poor absorption of food, leading to poor growth and under-nutrition. The sweat glands are also affected, in that they make a much saltier sweat than normal...Most parts of the body that make mucus are also affected, including the reproductive tract in men and women with CF." From Cystic Fibrosis: A Guide for Patient and Family, Third Edition, David M. Orenstein

** The sweat test determines the amount of salt in the sweat and is the defining test for Cystic Fibrosis.

Thursday, July 23, 2009

Why I started this blog

I was recently asked to help lead a new Mom's group at my church. In an effort to encourage other moms to join our group, we, as team leaders, decided to give "testimonials" about our lives as mom's. We were to share our testimonial at a "ladies luncheon" to which all the women of the church had been invited. I was scared. My face flushes with embarrassment just thinking about speaking in public. But I resolved to do it. And I knew immediately what story I should share. But again, I was afraid. The story I knew I should share was a difficult story for me to tell, and I wasn't sure I could share it without becoming too emotional. I didn't want to cry in front of a bunch of strangers! (Although that would've been a great testimony for my need of a mom's support group!)

So I debated for a couple of days. What story should I share? The fear got to me, and I decided to share a comical story about my son...one that wouldn't make me cry. I stood up in front of the group of women at that Saturday luncheon and shared my funny little story. But it wasn't my REAL story. It wasn't the story I was supposed to share. And I felt I had let myself down. Overcoming fear, I've discovered, seems to be one of my greatest challenges.

So in a small effort to overcome my fear, I decided to create this blog and share my REAL story--my story about raising a child with Cystic Fibrosis (CF). I'm a much better writer than speaker anyway, and maybe this blog will allow me to gain the confidence to share my story verbally some day. In any case, I hope to connect with others whose lives have been touched by CF. I've discovered that hope can often be found in simply knowing you're not alone.

Andi