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.

Monday, August 29, 2016

Be a Badass in Every Season! A tribute to my Grandma McLeese

Recently I came across a conversation on Facebook between two women I met in college whom I’ve always admired and found inspiring. One of them had recently made a life-changing career move, and they were discussing how important it is to be a badass in every season of life. I chuckled when I read it, but I knew what they meant. I began to think of my grandma who had recently fallen, broken her hip, and suffered several mini strokes and a heart attack. I thought about her life and how badass she was in every season. I hope you don’t think it vulgar or flippant of me to call my grandma a Badass. Let me explain:

Grandma McLeese was not the kind of grandma who would bake cookies when we came over or give us warm, fuzzy hugs (very often). She was a Registered Nurse, and a woman who made things happen.

My Grandma was a Woman of Action. 

She was born in 1929, and the stock market crashed later that year. She grew up in the Great Depression on a farm in central Illinois near Towanda with her parents and siblings. This must’ve been a difficult time of scrimping, saving, and making do. I think this must be why my grandma never liked to waste anything or throw things away. Everyone always made fun of her on holidays for washing plastic silverware and reusing it! 

My Grandma also came of age during World War II. This was a time when women were working outside the home to help with the war effort while so many men served. As difficult as that time must’ve been, it was a time of opportunity and economic growth for women. My grandma was 16 when the war ended, and I wonder if her experiences with it inspired her to a career in nursing. I wonder who she knew who served in the war and what her life was like living in the middle of Illinois when so much was happening in the world. 

I’ve heard stories about how when my grandma was in nursing school, she and her friends would hang out and have drinks together at the Caboose. I think that’s where she met my grandpa. I’ve often thought I would’ve liked to have had a drink with her there.

I learned in recent years, that on my grandma & grandpa’s wedding day, October 28, 1950, they came home after their marriage ceremony and a celebratory luncheon to find a letter waiting for my Grandpa, drafting him to the Korean War. I can only imagine what they must’ve felt at that moment. My grandpa went off and served in the Korean War, and my grandma continued living her life, having their first born, son, my uncle Bobby, the following August.

My grandparents had eight children, and a story I remember being told growing up was how my grandma handled diapers.

This was in the 1950’s, and cloth diapers were, of course, the only option.  At one point, my Grandma would have had at least 3 in diapers—maybe 4: my aunts Linda, Mary, Paula & my mom, Tricia. So in the thick of this diapering season of her life, this is what she would do. She washed the diapers using her ringer washer, which I’m sure was a lifesaver at the time. She then hung diapers up to dry (as dryers were not yet affordable). Sometimes, she needed diapers faster than they would dry. So she clothes-pinned the cloth diapers to the antenna of their car, and had my grandpa drive around the block until the diapers were at last dry! 

As a kid, I thought this was must’ve been disgusting and so embarrassing! Now, as an adult and mom of 4, I realize that without a doubt, my grandma was ingenious! And seriously badass.

As a nurse, my grandma worked the night shift, which allowed her to come home, get her 6 kids off to school, and take care of her two younger sons during the day, when she also somehow found time to sleep! I do not understand how she survived this season of her life!

My grandma had a long career in nursing, but by the time I was born in the late 70’s, she was the school nurse at Bloomington High School where she worked until she retired in 2005. I went to college in Bloomington and would occasionally meet people who went to BHS. So when you meet someone and realize you have a connection to their life, you share it, right?! I quickly learned that my comments of “Oh, my grandma is the school nurse of Bloomington High School!” would not be met with the same enthusiasm I felt because my grandma was the Feared and Revered School Nurse of Bloomington High School.  I loved seeing people’s expressions and raised eyebrows as they grappled with how to respond to this woman’s enthusiastic granddaughter!

Even though my grandma’s health and memory have been declining in recent years, she continued to live her life as usual, with her children and grandchildren rallying around to help make it happen. She liked going to 4 o’clock mass on Saturday nights and enjoyed visiting with her children, grandchildren, and great grandchildren. We kept our birthday and holiday traditions alive: bi/tri-monthly birthday parties, Tom & Jerry’s on Christmas morning, the annual May Talent Show & Campout, and red & white checked 4th of Julys. She loved chocolate and appreciated a good meal. She was a woman who knew how to be present and in the moment. When she spoke to me, I never felt her thoughts were elsewhere. She didn’t dwell in negativity and found solutions to problems. She was always moving forward. A Woman of Action. A Badass in every season.

I love you Grandma! Thank you for all you sacrificed for us and for being such an amazing role model!  McLeese Family, let’s keep moving forward. Take risks, stay true, keep your promises, find solutions, revel in your joys, mourn your losses, and take care and love those closest to you. Be a Badass in every season!

Tuesday, January 19, 2016

A Thank You & An Update

January 2016

Great Strides Walk in May
As 2015 came to a close, so did our fundraising year for the Cystic Fibrosis Foundation (CFF). With a new baby, Steve’s new business, and the various activities of our day to day lives, I wasn’t sure I could fit fundraising into the mix this past year. I decided to use the CFF’s online tools and, a few days before our Great Strides Walk in May, began a last minute fundraising campaign with the help of Facebook. Once again, I was blown away by the generosity and thoughtfulness of family, friends, acquaintances and complete strangers. Alex’s soccer team also surprised him with a donation at the last soccer match in May. We are humbled and grateful for all your support for Alex and for all those battling to live a normal life with Cystic Fibrosis. Thank you!

I just want to take a moment to say that your donation is money well spent. The Cystic Fibrosis Foundation is a phenomenal organization. It was created in 1955 by a group of parents who wanted healthier and longer lives for their children. At that time, most kids with CF did not live to attend elementary school. Through the CFF’s continued efforts to find new and better treatments, the average age for CF now is about 40 and continues to grow. A new medication called Orkambi was just FDA approved this summer, and Alex was able to start it once he turned 12 at the end of July. After getting through the initial side effects, Orkambi seems to be doing its job, which was evident at his last clinic appointment with a 3 pound weight gain in just two months!

Alex receiving the surprise donation from Coach Rodriguez
On a more personal level, 2015 was a bit rough for Alex health wise. He had sinus surgery at the end of May to remove a rather large polyp, and recently, he had a drop in his lung function. The doctor added treatments and medications, and Alex continues to take it all in stride while maintaining a positive attitude. 

In April of 2015, Alex’s CF Care Team referred him to have a wish granted through Make-A-Wish. After much deliberation, Alex had it narrowed down to two wishes: to meet astrophysicist and host of Cosmos, Neil de Grasse Tyson or to travel to Ireland to learn more about his family’s heritage. In the end, he chose Ireland. What a kid! The trip is scheduled for the end of March, and if all goes as planned, we’ll be learning about the ancient history of the Killians and attending mass in County Roscommon on Easter Sunday!

Thank you once again for your donations, support, and prayers. Here’s to a healthy 2016!

The Killians

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.


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 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,


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…)