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A different kind of life

Sunday, June 2, 2013

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Story and photos by Juliana Keeping

Sunday, June 2, 2013 | Story and photos by Juliana Keeping | Page 1 | Pulitzer
Sunday, June 2, 2013 | Story and photos by Juliana Keeping | Page 1 | Pulitzer

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Sunday, June 2, 2013 | Story and photos by Juliana Keeping | Page 1 | Pulitzer
Sunday, June 2, 2013 | Story and photos by Juliana Keeping | Page 1 | Pulitzer
The Oklahoman reporter Juliana Keeping’s son, Eli Ellison born with cystic fibrosis December 5, 2012.

The Oklahoman reporter Juliana Keeping’s son, Eli Ellison born with cystic fibrosis December 5, 2012. Photo provided

A different kind of life

Story and photos by Juliana Keeping

He’s perfect.

I said those words as my doctor handed me my baby boy, born Dec. 5. My husband, Mark, and I fell in love with Eli the second we laid our eyes on him. We did not know what was coming next. We did not expect what was coming next.

We had 14 hours of perfection. Something went wrong. Eli’s tummy swelled. He threw up. Again and again. No one could tell us why.

“ I don’t understand. You need to cut him open? “ Nurses in jumpsuits whisked

I don’t understand.

You need to cut him open?

Nurses in jumpsuits whisked him away and put him on a helicopter. They placed him in a sterile contraption that looked like a giant, silver Easy Bake oven. They handed him a blue fleece blanket the size of a pack of cards. He flew to another hospital. A surgeon there told me his condition was serious. They needed to operate. Immediately.

“I don’t understand. You need to cut him open?” Yes, to operate. I fell apart. I’ve since put myself back together.

My child’s life

Pure and innocent, few things are more perfect than a sweet newborn baby. Maybe that’s why it’s

Eli Ellison after surgery. so terrifying, so heart wrenching, when it’s dis- covered something is

Eli Ellison after surgery.

so terrifying, so heart wrenching, when it’s dis- covered something is wrong. On Dec. 18, my husband and I learned Eli has cystic fibrosis (CF), a deadly genetic disease that, over time, steals away a person’s lung function. People with cystic fibrosis have bodies that make thick, sticky mucus. There is nothing wrong with CF’ers’ brains. Outwardly, they’re just like you or me. Yet, the disease can impact every organ in the body. Most commonly, it disrupts lung function and digestion. Cystic fibrosis is deadly because over time it robs a person of the ability to breathe. Eli was born to a family of scrappers. We are go- ing to do everything we can to keep him healthy, and there are a lot of things you can do. It’s not the disease it once was. People are living into their 60s; the median age of survival is 38. That’s still much too young. Still, in medicine, in life, nothing is certain. Cystic fibrosis is a difficult reality to face. We faced it 14 hours after he was born. Eli’s tum- my swelled because the meconium — an infant’s first bowel movement — was thick and sticky. The first poo got stuck, the upper gut puffed up. It’s called meconium ileus and it’s a condition that can kill, has killed. I’m a reporter in my professional world. When an ordeal hits — a homicide, a fire, someone else’s tragedy — I go there. In the hospital, I faced an ordeal of my own.

I pretended to be tough. I tried to learn and

understand, but this wasn’t a report. This was my child’s life.

I think I even told Eli’s surgeon, Dr. David Tug-

gle, something like, “Give it to me straight. I can handle it.” That was a lie. I couldn’t. The words cystic fibrosis, the very thought that my infant was born with a disease that kills, made me so lightheaded at first I almost passed out — several times. I could feel the color drain from my face. The world started to spin. My ears rang. I needed a chair, some water. Tuggle saw right through me. He let me know what I needed to know then, in the moment. No more, no less.

I was in a fog, exhausted. The days in the neona-

tal intensive care unit ran together. I couldn’t keep doctors’ names straight, let alone the information they kept delivering. It was hard for me to face the information, yet I didn’t want to forget any of it. That’s why I started to write. To record. Words, pictures, video, sound. I haven’t been able to stop.

pictures, video, sound. I haven’t been able to stop. Juliana and her son Eli Ellison after

Juliana and her son Eli Ellison after surgery.

We’re not alone

My reasons for doing so are evolving. At first, I just needed the stress relief, and to document, so I could remember. It next became a great way to update family members and people who care about my family on Eli’s progress. He was in the hospital more than 30 days and required two major surger- ies before he was 3 months old. Eli’s first surgery separated his small intestine from his large intestine. Doctors flushed out his blocked small intestine. The ends of his little gut poked out of his tummy. They reminded me of red lifesavers, the two dots, connected by an incision scar. He pooed into an ileostomy bag affixed to his stomach. He wore two of these bags, one for each little gut end, for two months. For two months, I wrote a lot about poo bags. The prayers, the good vibes, were rolling in. The support gave us a boost at a difficult time. As I continued to write, I heard from other moms who have children with cystic fibrosis. They’d been through something similar. Or, they were going through the exact same thing, right then. These mothers and fathers started following our story. Moms and dads with children who had other special needs also have started to tune in. I figured that, maybe by writing, I could help more than those in my immediate family. My family is new to Oklahoma. Like others com- ing to Oklahoma City, we were drawn by the sturdy economy, the chance for a better life. We are new- comers to the wind-swept plains. It can be lonely to be the new kid in town. Eli has opened up a world to us — a world with lots of interesting and wonderful people whose lives have been impacted by CF. They are raising money, pushing for a cure, together. Lives depend on it. That’s why CF’ers and those who love them are so driven. I think that’s what’s driving me to share so much, here, now, on these pages and my own blog. I want to help my son, but I want to help his community, too. It’s a comfort to know you’re not alone when you face the unexpected. To you, the experience feels

when you face the unexpected. To you, the experience feels rare, exotic and terrifying. Then you

rare, exotic and terrifying. Then you discover a new world, one populated by others dealing with the exact same thing. We form groups like this to find comfort. Circles of grief for the life we thought we’d get, then, didn’t. Our new groups don’t have to be dreary. There is humor there. Happiness. Support. Fel- lowship. Love. These are the things that make a harder life, the unexpected life, feel better than tolerable. Life can feel normal again. Life can feel good. Especially when you’re not alone. Eli is just a little man, but he’s taught me a lot about life in his first five months here on earth. I’m learning more about my son’s disease as he grows. The most important thing I’ve learned is this:

He is not his disease. Let me make that clear. He is a baby just like any other baby. He is a happy little man who likes being held, laughing, his sister Laila, his daddy and trying to scoot, these days. He loves his mama. Me.

I love Eli. He is perfect.

Dec. 10 - This is Eli

Dec. 10 - This is Eli The nurse was talking fast. She wasn’t panicked. She wasn’t

The nurse was talking fast. She wasn’t panicked. She wasn’t calm. *** Chopper nurses in black jump suits appeared. They gave him a teeny blankie for the ride over. I don’t really remember what I said or did at this point, except experiencing every symptom of a sloppy freak out. Children’s Hospital at OU Medi- cal Center surgeon Dr. David Tuggle told me they needed to operate. It really didn’t matter what he said, because all I heard was “cut my baby open” and I fell apart. Mark had left minutes ago to take Laila to the park. A nurse told me to call him to come back, so I did. I spent the next few hours roaming around the hospital, a postpartum mess, still stuck with IV tape, Percocet coursing through my veins, flinging snot and tears every which way. I was orbiting a disaster moon unaware of the rest of the solar system. Along those lines, I don’t remember what Mark was doing other than be- ing supportive and freaking out outwardly much less than me. I felt like I’d been beaten with a bag of rocks and glass. I looked like it, too. So much for the baby-mommy glamour shots to go along with my perfect pregnancy and labor. During Eli’s surgery, a nurse put us in a private waiting room. I took this as a disastrous sign that we would need somewhere private to hear the horrible news. During his surgery, we both stared at the wall and expected the absolute worst. My innards were a big ball of doom. We did not get horrible news. He handled the surgery quite well.

Dec. 11 - Clothes

Poor baby finally got to put on some clothes after bearing a lot of indignity with people messing with his bum and guts for days on end. He’s not so sure about clothes.

Dec. 19 - Diagnosis

Eli has cystic fibrosis. I don’t care. I love him. He is perfect.

Dec. 23 - A different kind of life

I spoke to a woman named Pam Denham who

has two sons with cystic fibrosis. There are more than 1,000 mutations of the cystic fibrosis gene that cause the disease. Eli and

Pam’s two sons have the most common type. Mark and I unknowingly each passed a copy of the Delta F508 mutation to our son. Pam noted that even as her sons have the same type of the disease, their illnesses are very different. Pam’s sons are 16 and 19. Her 16-year-old, Preston, just got his license. Stephen, her older son, is in college. Her younger

son, like Eli, was born with a bowel obstruction. Its proper name is meconium ileus. It’s not an indica- tion of how severe his illness will be. “You’re going to have a different kind of life,” she said. We would be OK, she assured me. She also warned:

“And you’re going to learn real fast how to be a bitch.”

I quickly figured out what she meant--being a

good advocate for your child. Like when I argued with a few different nurses about the way my son’s poo bag was attached to his skin. It was leaking onto his as-yet-unhealed umbilical cord. Some nurses did it right; others rushed it and the bag would leak. I finally figured out I should stop com- plaining to the nurse if I felt her work sucked and go straight to the boss, the charge nurse. Suddenly, everyone was very concerned about my concern of the leaking poo bag. There was a special order for a wound care expert. Certain nurses are better at working the bags, and they would be the ones to deal with Eli’s problem. My constant presence at the hospital didn’t hurt. I still think I’m too apolo- getic about my concerns. Working on getting the “I’m sorrys” out of my vocabulary. Because actu- ally, I’m not, so there’s no use being a phony and pretending I have any sense of remorse for hound- ing people about the finer details of my kid’s care.

Dec. 24 - Applesauce and enzymes

Dec. 24 - Applesauce and enzymes Eli gets enzymes in applesauce before every meal to help

Eli gets enzymes in applesauce before every meal to help him absorb food. Without the enzymes, he would starve. You wouldn’t think you can give a new baby applesauce, but apparently you can. He puckers a little bit but really seems to like it. Here’s Eli getting his enzymes in applesauce and making applesauce faces.

Dec. 30 - Coming home

and making applesauce faces. Dec. 30 - Coming home The most intimidating part of his care

The most intimidating part of his care involves his central line. This is a catheter that runs from his clavicle to about a centimeter away from his

heart. It is capped outside of his body and it is extremely important we keep the cap and the surrounding area clean. We have to flush a few milileters of saline into his central line every day, which makes me incredibly nervous and Mark so nervous that he is leaving this part of the care to me. There is a chance a blood clot could form and that we could push the clot into his body, killing him. This is why it’s important we are both con- scientious and careful as we learn about and meet Eli’s medical needs until his next surgery. A lot is at stake. He also needs enzymes in applesauce before every meal, a special vitamin goo and liquid iron. Plus all the regular stuff babies like — being held, being cozy and eating a lot.

babies like — being held, being cozy and eating a lot. Jan.1-Home.Sweet,chaotic, home For the first

Jan.1-Home.Sweet,chaotic,

home

For the first time since Eli was born, I woke up with baby boy in his own bed. Or I would have, had I ever “really” slept. I didn’t have to call the NICU and ask how he did overnight, since we already knew. He did well! We brought Eli home from the hospital with bags and bags of medical supplies. His poo pump- er, ileostomy bags, lots of different sterile wipes of different varieties, etc. etc … One of Eli’s tummy bags started to leak, so Mark

and I teamed up to fix it. We spread towels out on

the kitchen table, laid out all of his supplies, and accomplished the switch-out of the bag. We were

a machine of efficiency.

Jan. 5 - Eli is 1 month old

Happy 1 month, little guy.

Jan. 17 - Welcome to the clinic

I took Eli (and Laila) to Children’s yesterday to

meet with pediatric surgery and for our first ap- pointment at the cystic fibrosis clinic. Eli’s second surgery is scheduled for Jan. 30. Dr. Tuggle briefed me on Eli’s next procedure. Then we went to the cystic fibrosis clinic.

They do things a little differently for CF patients. The first thing I noticed is that the reception- ist gave me a pen and told me to hang onto it to prevent the transfer of germs. CF patients don’t wait in the waiting room, they go right back. The clinic encourages parents to bring toys from home. The people who come into Eli’s clinic room wear

a protective barrier over their clothes and rub-

ber gloves. I know this is all done to prevent the transmission of germs — CF patients need to avoid other CF patients so they don’t catch certain lung

infections, for example. Still, that was all new. It brought the fact he really has this disease home, and of course, made me sad.

I heard a few of the children coughing. Their

hollow, rattling little-kid coughs got me down. It upsets me that he has to deal with any of this. At least now I can just get sad without crying, wanting to puke or starting to pass out. An im- provement. I’m reminded when confronted with new CF things — something as innocuous as a germ-free ink pen — that I’m still coming to grips emotion- ally with the fact my child has this disease. I’m a carrier; Mark is a carrier; we unknowingly com- bined our recessive traits and against the odds, passed cystic fibrosis along to our son. I shouldn’t feel guilty. I do anyway, mostly when I’m dragging him to and fro to the hospital or messing with his tummy bags, which makes him upset.

Jan. 25 - Against the wind

Twice today, I looked down and realized I was

wearing a shirt with a big poo blotch on it. That’s due to buddy’s poo bag, which tends to leak as I hold and/or feed him. Or, for no reason, it just leaks. I will not miss the poo bag. None of us will miss the poo bag. Mark and Laila modeled the strange infant poo bag marketing materials last night. We are all per- fectly sane. Nothing to see here.

Jan. 31 - Round 2

Eli had a second surgery Jan. 30 to put his gut ends back together inside his body. When they wheeled Eli back into recovery the first thing I noticed was the pallor of poor buddy’s complexion as he lay in his new stainless steel crib. “He looks gray.” He tried to cry out but his voice was weak, raspy. The breathing tube he’d had in for his surgery irritated his throat. Ugh. My baby was in pain. He would need two blood transfusions and then platelets to help with clotting. I think he lost something like 10 percent of his blood volume.

I took a look at his tummy. I’d gotten so used

to the red ends of his intestines poking out it was strange to see his belly was smooth again under its dressing. Poor little guy. “Mommy’s here, buddy. Good job today. I love you, buddy.” The color today has returned to Eli’s face. I’m relieved. His heart rate spikes when he whimpers in

pain. I just had the nurse give him a morphine boost.

I hope he heals fast and can be with us at home again soon.

Feb. 5 - 2 months

Eli is 2 months old.

Feb. 8 - Progression

Being at home is nice. And busy. I thought I’d show Eli’s latest children’s visit in pictures. We were there for six days instead of 26.

Feb. 11 - Never more devoted

We arrive in my neighborhood.

“Why did I just see a semi parked on the street and a feral cat?”

I pull into my driveway after picking up my sis-

ter, Laura, from the airport. “Get over it. Urban area. Don’t worry. The pros-

Juliana Keeping’s sister Laura Wetzel with Juliana’s son Eli Ellison. titutes stay down the way.

Juliana Keeping’s sister Laura Wetzel with Juliana’s son Eli Ellison.

titutes stay down the way. And that murder down the street? Drug-related. Killer knew victim. Vic- tim shot through peep hole. Totally safe here. That was at least a half mile away.” “Ha!” “Oh you think I’m kidding. Good.” After I told Laura, my older sister, I’d gotten a job on the plains, she said she’d never come here. Something like:

“Oklahoma? FYI I’ll never visit.” “Wow. Thanks. For Christmas, days before I left Michigan, she got me a deluxe weather radio. Laura has a fear of flying and a worse one of storms. My sister avoids planes, but the moment we realized something was wrong after I had Eli, she made plans to visit us here in OKC. Our early decisions about Eli’s care were guided — directed, really — by her knowledge of medicine and hospitals. She tells me what to do. What ques- tions to ask. We are different people. I love my sister. She loves me. We’ve still clashed over the years. Our differences don’t matter so much any more. We both love my son. Eli is a gravitational force, a new moon for us to orbit around.

Feb. 14 - Xo’s

We had our second visit to the CF clinic yesterday. They gave me my own pen to take around — something CF clinics do to avoid the spread of germs. Last time I got all freaked out and sad that I needed my own pen. I thought nothing of it this

time, other than to note the difference a month had made in my reaction to little things like this. Ah, progress. *** I signed lil buddy up for a study and to be on a national registry of CF patients. The study is observational, meaning the research group will be monitoring about 200 CF babies’ nutrition and growth over a yearlong period. Eli gave the re- searchers his DNA via a cheek swab. The woman working the study sign-up is Dean- na. She is kind and smiles a lot at buddy and fusses over him. That’s how she convinced me to give up my DNA for the study, too, even though scientists aren’t yet sure how the parents’ DNA will be used. You want my genetic code? Yeah no problem. Now tell me more about how adorable my child is. Any- thing else? My soul? That shouldn’t be a problem … now, what were you saying about his beautiful eyes … The other thing about the study — Eli will be put in this sci-fi pod that measures his body fat composition. Deanna says this is really cute and I should definitely plan to take pictures and record. She speaks my language. I told her I’m all for that as long as she doesn’t force me into the pod.

Feb. 17 - Buddy smiles

Big boy comin’ atcha with his grill.

17 - Buddy smiles Big boy comin’ atcha with his grill. Page 9 | Pulitzer Prize
Laila and her brother Eli Ellison. Feb. 23 - Coughing in the craft aisle I

Laila and her brother Eli Ellison.

Feb. 23 - Coughing in the craft aisle

I cringe as a woman hacks all over the scrapbook paper. She does not cover her mouth. I’m shocked full-grown humans are so dumb and inconsiderate when it comes to hacking in public.

Cough into the crook of your arm. And please, wash your hands. I want to shout it from the roof tops. I was in Michael’s with Laila and Eli when I witnessed the woman spread germs so carelessly, without a second thought. Those germs could hurt my chronically ill newborn who I’d taken out on an errand for the first time. This made me nervous. He was covered in his carrier. Still.

Should I have stayed home? How can we stay home? We will go mad. Germs are everywhere. So are stupid people. Pam warned me about this. People are stupid. She didn’t say that. She said something along

are stupid. She didn’t say that. She said something along Dr. David Tuggle and Eli Ellison.

Dr. David Tuggle and Eli Ellison.

the lines of, “You are going to fight with stupid people.” Pam reminds me of the Sandra Bullock character from “The Blind Side,” minus Michael Oher and plus two CF teens, Stephen and Preston. Their mother is dedicated. She pounded on her babies’ lungs for five years. Five. Years. Up to two hours a night. Day after day, night after night, Pam tapped on her buddies’ chests to help loosen up the thick, sticky mucus that gathers in CF’ers’ lungs, en- couraging bacteria to thrive. Her husband is a pilot and is away a lot. That means their care has been mostly up to her. When her oldest turned 5 they came out with the vest to help do the work of tapping for her. I’ve only had to wait two months. Our vest should be on the way this weekend. A high school biology teacher told Stephen’s best friend’s science class that they would never know a person with CF, since those kids are dead

by high school. The friend raised his hand and informed her that Stephen, a person with CF, was two doors down. The teacher did not believe him. The friend got Stephen. Stephen walked up to that teacher and pointed out that, while he did have a feeding tube, and while he did have to take insulin for diabetes that people with CF tend to develop, he was very much alive. He played base- ball. He rode motorcycles. Unfortunately, Stephen faced a similar situation in college in Arkansas recently. He wants to be a doctor. His biology professor told his class people with CF drown in their own mucus. Stephen was so pissed off he stormed out of the class. He later confronted the professor. Lung infections do create scar tissue and reduce

lung function. People with CF do not drown in mucus. People are stupid. Teachers of the world, up- date your curriculums. Know your subjects. Stop spreading ignorance. Stephen has had to fight with stupid people. “You are going to fight with stupid people,” Pam told me. I’d been warned. But I wasn’t prepared. Back to Michael’s.

I didn’t know what to do when the hacking

woman showed up, poking her head around Eli’s carrier. She wanted to take a look at him.

I almost fell over. I didn’t know what to say. I wasn’t prepared for this kind of stupidity!

I muttered some nonsense, put my body in be-

tween the woman and Eli and bee-lined it out of there.

I later asked Pam how I should have handled it. She suggested I say something like, “I don’t mean to sound rude, but can you stay back? My son has a chronic lung disease.”

Feb. 26 - Tuggle time

Dr. David Tuggle saved my son’s life. Tuggle signs his emails “Tug.” He is a pediatric surgeon and the chief of pediatric surgery at Children’s. I met him this morning for Eli’s follow-up appoint- ment. “Thank you for saving his life,” I said. I’ve prob- ably thanked him about 20 times. It was all in a day’s work for Tuggle. Tuggle took a look at Eli’s scar, which has healed nicely, and said I can yank out the stitches if I

want. We can finally stick buddy in the tub, too. The visit lasted only a

want. We can finally stick buddy in the tub, too. The visit lasted only a few minutes — Tuggle is a busy man. However, I made sure to get a picture of little man together with his intestinal mechanic. I later looked Tuggle up online to make sure I got his name and title right. That’s when I learned Tuggle performed an on- site amputation to free a victim from the debris of the 1995 Oklahoma City bombing. My child’s surgeon is so more than just my fam- ily’s hero — he’s a bad ass. *** Now, we’re going to turn our attention toward our wee lady, Laila. She is getting tested tomorrow to rule out cystic fibrosis. Eli tested positive for cystic fibrosis in a newborn screen and a sweat test. Tomorrow, Laila will get a test to measure how much salt is in her sweat. People with CF have a higher level of salt in their sweat than someone who does not have CF. Laila doesn’t cough. Her illnesses don’t linger. CF is unlikely. But, she’s small. She’s always been small. Being teeny can be related to CF, since the body doesn’t absorb nutrition right. Or she could just be little. We are terrified.

Feb. 28 - Dodging bullets

Laila dodged a bullet; she does not have cystic fibrosis. We are so relieved.

Luckily, the test she took today showed a low level of salt in her sweat. Every child Mark and I have has a 1 in 4 chance of having cystic fibrosis. It’s a game of genetic roulette. Laila does not carry the disease, but like mil- lions, she may be a symptomless carrier of the defective CF gene.

March 1 - Airway clearance

Every day we take an hour to do chest physical therapy to clear little man’s airways. As medicine stands now, Eli will need to do this every day for the rest of his life. Little CF buddies’ chests can be tapped manually — with a squishy cup device that fits in the palm or the cupped hand — or via an (amazing, convenient) system called ‘The Vest.’ We just got ours. It’s a lot easier than the manual tap- ping and Eli likes it more. The therapy is done to rattle thick, sticky mucus characteristic of cystic fibrosis. That way the mu- cus is coughed up. Otherwise it would pool in the lungs and encourage infection. Eli doesn’t sound mucus-y but since we started him on the vest he has begun to cough wee man coughs now and again. The process of airway clearance is better shown than told so I made a video.

March 5 - 3 months

Happy 3-month birthday to Eli.

March 7 - The nanny

How does one find a reliable baby sitter? Well, I don’t know. But I’m learning. I’m looking for a baby sitter because I can’t put Eli in day care. Well, I could, but he would get sick, and I would lose my mind, because we need to keep buddy healthy on account of his chronic illness, cystic fibrosis. All I want is a modern-day Mary Poppins. Someone who is warm but stern and capable. Someone who loves children. Plus a, flu shot, in- fant CPR certification and a car. It’s not too much to ask. Really, it’s not. Back to my search.

March 16 - Coffee and a lovely person

I met Alyssa Siler because we each have a child living with a chronic, deadly disease.

Laila Ellison and her brother Eli. Living with a chronic, deadly disease. Alyssa and her

Laila Ellison and her brother Eli.

Living with a chronic, deadly disease. Alyssa and her family made a choice to let liv- ing outweigh the chronic, deadly disease part of that phrase. We met at Starbucks in a busy strip mall off a main thoroughfare in northwest Oklahoma City. We met there because I had Eli and made this impulsive decision one day to write about it. I was upset — really upset — because something was

wrong with my newborn son and I didn’t know what else to do. Then people shared my words and this person knew that person who knew Alyssa. I got a Facebook message with her phone number. I called. Through the powers of social media and the universe, we converged at a Starbucks. We swapped stories. Like Eli, her daughter was born with a blocked bowel, a condition called meconium ileus. This

was not detected before her daughter, Hayden, was born six years ago. Alyssa had her baby and what happened next was not supposed to happen. Her baby did not cry. She only grunted, and her tummy was bloated. Hospital staff whisked Hayden away at a hospital that did not have a neonatal intensive care unit. What’s happened since Hayden was born and since the surgery is that she has become an artist, and ath- lete, a kindergarten student, a happy little girl. She is a lot of things. She is not a disease, a diagnosis, a set of lungs to be fretted over. Yes, she has had infec- tions and takes breathing treatments via inhalers. She wears a vest every day to shake up her lungs. Her treatments have to start every night at 6:30 p.m. to make her bedtime. The downside is that Hayden has little-to-no unscheduled “Hayden time,” and she is old enough where that really bothers her. Alyssa feels bad about that. Parents have to be strict with treatments, because those treatments keep children with cystic fibrosis as healthy as possible. Hayden gets to skip them on Christmas and her birthday. Hayden had emergency surgery on her gut at Inte- gris Baptist Medical Center in Oklahoma City shortly after she was born. Alyssa’s reaction to her daughter’s diagnosis was different from mine to my son’s in one big way. Im- mediately, she wanted to research, to know more, to know everything, about the disease. Right away, she geared up for a fight. She called up the local chapter of the Cystic Fibrosis Foundation when Hayden was 2 weeks old and asked, “What can I do?” I’ve only just begun to understand CF, because only recently have I been able to emotionally handle the research. I’m getting there, however slowly, and I’m not trying to rush. But despite our different paces on the path to un- derstanding, Alyssa and I agree in a big way on this point: Knowledge is power. Alyssa is one of those lovely people that makes you feel a little high on life. Also, I have to mention, she happens to be a beauty queen. She entered the Mrs. Oklahoma pageant a few years back because she saw it as a platform to spread awareness about cystic fibrosis. Her father died four days before the con- test. She pushed forward, won, and that’s what she’s done. Due to her family’s involvement in the Sooner

Branch of the Cystic Fibrosis Foundation, $750,000 has been raised in the fight against cystic fibrosis. In the last few years, scientists have made major break- throughs in the treatment of the disease, and more are on the horizon. Private funding is key because it’s a relatively rare disease that impacts 30,000 people in the U.S. drug companies aren’t willing to risk mil- lions looking for a cure. That’s where the nonprofit comes in.

April 5 - Baby dreams

Eli is 4 months old today. Happy birthday, buddy!

I returned to work this week.

April 13 - Of lice and nanny

I’m rolling with the punches this week. And Eli has learned to roll.

I found a nanny by placing an online ad. This

nanny quit after her first day of work. Before she quit she told me my daughter had lice. It was Laila’s birthday.

Nanny X, as I will call her, called me at work. I ar- rived home in a panic armed with lice-fighting sup- plies. I sent Nanny X home.

I found no lice — what was she talking about? I

asked her this on the phone. Could she be more specific? Her lice story just kind of disintegrated. She then quit. It occurred to me that new nanny had faked a lice scare on my daughter’s birthday so she could get out of work early. I’m relieved. Clearly, something wasn’t right there. But I had to think: Are we really that bad? Eli has a lot of special needs. Laila is my darling

girl, but there’s no denying she is 3. Three is the new 2. I get it. We’re not everyone’s cup of tea. Luckily, a new nanny appeared. One who could handle us. The universe had to move Nanny X aside so we could find her. She’s our real modern-day Mary Poppins. Her name is Lorena, and Mark’s co-worker sent her our way. She’s got a heart for my kids. She potty trained three of her own siblings. This was meant to be.

April 14 - At the clinic (http://hithisiseli.

com/2013/04/14/what-cystic-fibrosis-does-to-

the-lungs)

I met Celia Palmer, the executive director of the Sooner Chapter of the Cystic Fibrosis Foundation branch, for lunch.

It was great to meet her, because she’s lovely.

The most exciting part of our meeting: there are advancements in medicine now that could save

Eli’s life. I took her audio and made a little video.

A drug called Kalydeco was approved for another

type of CF in January. It addresses the disease at the cellular level; patients on the drug are gaining weight and their lung function has improved. A drug combination that includes Kalydeco is be- ing studied currently for Eli’s mutation, the Delta

F508.

In other news, I raced from work yesterday to take Eli to his monthly cystic fibrosis clinic visit. Since the lungs tend to do well during a baby’s first year of life, most of the focus is put on nutrition and weight gain. He’s doing great! Eli is just shy of 14 pounds. He’s in the 10th percentile for weight. That’s small, yes, but he is tall. Something like the 87th percentile for height. Tall and skinny. Sounds like someone I know, i.e., Eli’s baby daddy. And by that, I mean my husband, Mark. The staff took his measurements and did a throat swab to check for bacteria that could harm the lungs.

May 2 - The Principal’s office

(http://hithisiseli.com/2013/05/02/the-principals-

office) My editor asked me to step with her into the news director’s office. What have I done now It was the first thought that crossed my mind.

?

My editor’s boss, the news director, is named Robby.

I followed my editor into his office. We sat down.

I found out Robby subscribes to This is Eli.

“I find it very compelling,” he said. “You’ll sleep when you’re dead. Ha-ha — I liked that.” “Oh, wow,” I said. My boss’s boss was quoting the post I wrote the night before. Well, early in the morn-

ing, anyway. I finished around 1 a.m. “Thanks! You subscribe?” “I’ve read it since the beginning.”

Now, he wanted to see if I’d like to write a first-per- son account of my experience with Eli for the paper. Like a column, but with more space. I could write it however I want. Maybe vignettes — my editor, Kathryn, said — like a timeline. I could use the pictures I’ve been taking.

I liked those ideas.

I told them I would have to think about it, even

though I knew as soon as he suggested it my answer was “Yes.” And now it’s time to panic. I’ve got a deadline.

May 3 - Mean streets

I was a strange creature, a weird amalgamation of

life and death, growing a baby, chugging out copy on violence. Eli went with me in utero to around a dozen homicide scenes.

I often encountered pregnant women in the neigh-

borhoods where the violence took place. Mothers. Children. I leave each neighborhood when my report- ing is through. They stay. My pregnancy bonded me to my interview subjects at times. The mother of a man who died days after police of- ficers cracked his rib as they arrested him was tickled she guessed correctly I was going to have a boy. Her son died alone in the hospital — alone, of pneumonia. He had a criminal record. He was her baby. “He’s sitting real low, mm hmm,” she said, smiling. Boy, she guessed, correctly. The man’s mother stood outside of the police station to protest the handling of the investigation, along with other family members, friends and an attorney. Some of them wore T-shirts with the man’s picture and the words “Cover up.” Eli is a tough little fella.

May 4 - Writing it all down

I’ve gotten to know other moms who have children with cystic fibrosis, but I met my first adult with the same disease as my son today. Her name is Andrea Cochran. She’s 27 years old.

I met Andrea because my family attended our first

CF fundraising event today. It’s called Great Strides, or-

ganized by the CF Foundation. Andrea’s group caught my eye because of the number of people wearing black shirts at Lake Overholser in Oklahoma City. The front of the shirt depicted an angel; the back said, “Team Cochran.” The shirt listed a number of sponsors. There were around 90 walkers. Andrea raised $3,000 last

year. The donations were still rolling in the day of the walk this year.

I wondered about her adult life with CF. Using the

upcoming piece in The Oklahoman as an excuse, I asked a personal question of her friends. Probably too personal. Probably a little rude. “Is she able to work?” Her friends shook their heads no. “No, she’s too sick.” It wasn’t the answer I had wanted. It upset me to hear that. She had worked full time, then part time, but she kept getting sick. She had open heart surgery last year to remove a blood clot that formed around a cath- eter that had been placed too near her heart. She had been receiving medicine through a port that sounded

similar to the port they had given Eli, his central line. Something went wrong with Andrea’s port.

I don’t know why I first asked about work, since the

ability, or even the choice, to work is not an accurate measure of a person’s usefulness, even if society thinks

it should be. It’s not. Look at Andrea, raising thousands of dollars, giving all these people a cause, a person to root for.

I know that adults with CF do attend college. Pam’s

son Stephen is there now and wants to be a doctor. CF’ers today hold jobs. Others get sick. Forty five per- cent of people will live past 18. That’s not good enough for me. The question about Andrea’s work was, for whatever reason, the first thing that popped into my mind as I asked her friends about her. “She’s a fighter,” her friend added. “She’s the strongest person I know.” The friends pointed out Andrea. She had such a glow, an energy about her, as she buzzed around, the center of this team. I asked her if she would talk a little bit, and then maybe, give me her cell, and talk more later. I was writing a piece for The Oklahoman, but really, I would just like to chat with someone who has grown up with CF, I said. I got her number. Said I’d call. She’s married. Her husband is John. She has a

Boston terrier named June Bug. It might take me a while to make the call. I’m tak- ing it all in slowly. At the same time I feel compelled to help fundraise and raise awareness about CF. It doesn’t feel like an option because it is actually a matter of life and death for my son. I’m a writer. I can write. That’s why I agreed to write a piece for The Oklaho- man, even as I knew it would be hard for me person- ally to share so much, to think or even wonder about his future. He’s like a character from my family’s book, our hero, but we don’t know what will happen to him in the end. We can’t look ahead. You know, that’s OK. Everybody is born. Everybody dies. I was born and I became a writer and I’m on a deadline to finish this piece. We’re all on a deadline in life. Death is a certainty for everybody, not just my son. You. Me. The thing of it is, none of us know what that deadline is. My family had Eli and we made a decision together. We decided to enjoy the story as it is written and try hard not to try and guess the end. That would ruin the story. I liked what I saw at the walk. All those people with Andrea. Andrea was a moon for her friends and family to orbit around, rally around, love, like my son is for us.

May 5 - 5 months

Eli is 5 months old today.

Feedback & Testimonials

For ‘A different kind of life’ by Juliana Keeping

|

From: Lisa [mailto:lasankey@aol.com] Sent: Wednesday, June 05, 2013 2:25 PM To: Juliana Keeping Subject: Eli’s Story

05, 2013 2:25 PM To: Juliana Keeping Subject: Eli’s Story Friend of mine -- another CF

Friend of mine -- another CF mama, posted your article about Eli on Facebook. Ten years ago, my husband

and I had a similar experience. Our son Max was born after a normal pregnancy and took his first airplane ride

to Children’s Hospital in Minneapolis. While Max was recovering from his surgery, my husband and I learned

everything there was about enzymes, cpt

Today he’s a busy 10 year old. Just finished 3rd grade. Is very active.

A normal little boy who just needs a few extra things to keep him happy and healthy. :) He too is homozygous

delta f508.

I’m on Facebook -- Lisa Sankey

lisa.sankey.90@facebook.com

From: Amanda [mailto: Amanda.Blanchard@dvn.com] Sent: Monday, June 03, 2013 2:06 PM To: Juliana Keeping Subject: CF article

I had a science teacher in high school, Mr. Scott Overacre who had CF. He was 46 years old.

After I graduated Little Axe High School in 1995, he passed away in February of 1996 but we all knew he lived longer than he was ever expected to.

I remember he used to credit his wife for “beating” on him to get all of the junk out of his lungs every night.

Best wishes to you and Eli. What a cute little boy.

Thanks,

Amanda Blanchard

From: Mari Gmail [mailto:mari.farthing@gmail.com] Sent: Sunday, June 02, 2013 8:56 AM To: Juliana Keeping Subject: thank you

Juliana,

I just finished reading your incredible story in today’s Oklahoman. Thank you so much for sharing your

baby boy with us. What a powerful narrative of mother love, family resilience. There is such power and

connection in honest sharing and interaction, and I understand how intimidating it can be to share that part of yourself, but what a beautiful thing you’ve done.

All the best, Mari

Mari M. Farthing Writer, Editor, Doer of things. www.marifarthing.com

From: Ken Lay [mailto:klay3@cox.net] Sent: Monday, June 03, 2013 9:15 AM To: Juliana Keeping Subject: CF Story

Dear Juliana,

Your beautifully told story in the Sunday OKLAHOMAN ministered to us as I’m sure it did to many others. It brought back many memories of our granddaughter, Abby, who died with CF at the age of thirteen. She was a source of wonderful joy as well as deep sorrow. Her death was the culmination of several “sparrows” that fell in our lives which prompted me to write the book “When Sparrows Fall”, for sparrows do fall. If I may, I would like to mail you a copy without charge. If you would grant us that privilege please send me your mailing address.

Thank you.

Ken Lay

Klay3@cox.net

341-5428

Edmond, OK

From: Lynn [mailto:lynnprn54@aol.com] Sent: Monday, June 03, 2013 7:44 PM To: Juliana Keeping Subject: Eli

Dear Juliana,

I was moved to tears by your powerful article about precious little Eli. It must have been extremely dif- ficult for you to write about your experiences with your own son, and you did a masterful job. Your love for him obviously has no bounds! I, too, have a son and a daughter (now grown) who have both faced serious health issues. But it is truly hard to imagine being told that your newborn baby needs lifesaving surgery, and then learn 13 days later that he has CF. I am an RN who specialized in pediatrics for over 20 years, so I know the challenges that Eli and your entire family will face. New treatments are being developed all the time, and hopefully one of those will be the breakthrough that will cure this horrible disease.

In the meantime, I know that Eli will thrive under the care of Dr. Tuggle, his nanny, a beautiful big sis- ter, and two fabulous parents. Don’t forget to take care of yourself and ask for help when you need it. I

would love to see follow-up articles in the paper about Eli’s progress. Thank you for sharing your story.

Sincerely,

Lynn Yadon

From: Bill Parker [mailto:bparker175@cox.net] Sent: Sunday, June 02, 2013 12:30 PM To: Juliana Keeping Subject: Sunday’s Article about CF

Juliana,

I so appreciated your article about your families life with Eli. I am certain you will be getting so much response to your article about Eli, but I simply could not not respond to you for several reasons: 1) I have CF with one Delta F508 mutation; 2) I am 70 years old!!!; 3) I live in OKC; 4) I have worked my whole life; 5) all of the practices one does in the mornings and evenings for treatment and air passage clearence have given me the appearence and the fact of a normal life in between.

Your interior reflections on life as Eli’s Mother brought me to tears as it reminded me of what my Mother must have gone through with her child 70 years ago, not knowing what was wrong, or why, or what to do. At one point, when I was 31/2 the doctors had declared me dead and was in the process of telling her and my Father that it was over, when the monitoring equipment at that time started to indicate a return of life. Fortunately, penicillin helped me live for a long time, then other antibiotics until the mycobacte- ria complexes hit and new strategies were required.

But the point, I am thankful for you and your family because it caused you to write this piece. Stay strong, before long they will harness the Delta F508 and Eli will live longer than the rest of us.

Bill Parker

and Eli will live longer than the rest of us. Bill Parker Mark, Juliana and their

Mark, Juliana and their son Eli Ellison. Photo provided