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vitamin k-
05 Sep : 23:42
and cheese.
mom2lillian
05 Sep : 10:26
rock on Piper....oh and bring on the typhoid fever LOL. I can see a weird X-files type show now where some crazy CF scientist lets it loose on colleagues he's ticked at *evil laugh*
Momtana
04 Sep : 17:02
Piper
NoExcuses
04 Sep : 14:07
Yey Piper!PS we have fallen to #3 in the Pepsi Refresh Project
http://bit.ly/bJhm7v
j8411
04 Sep : 13:18
mac
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Memorials
- Sarah Espie
- Kira Broeder
- Jon
- Dreamweaver
- Owen
- Soot
- Lacy Pohlman
- Kristen Mathis
- In Sickness and In Health
- John G.
- Matt McMahon
- Dave P
- Jason
- Jennifer H
- Cody
- Craig
- Selina
- Richard Shannon
- Julie
- Shaun
- Rich
- Mark
- Eric
By: Rachel
Kira age 17 died whilst waiting for new lungs. She fought a tough
battle with Cystic Fibrosis right until the end, until her body
couldn't take anymore. All that met her admired and adored her
strength and courage and she found a place in everyone's heart. Even
on her bad days she knew what she had to say to cheer people up, even
though thats what she really needed herself. She always thought of
other people before herself and she would have never wished her
suffering on anybody else, not even her worst enemy. Kira would often
offer to take other people's problems on top of her own, take away
other people's suffering.
I didn't see kira as a friend, I saw her as a sister and others saw
her as a daughter to them. I was her lil sis, I looked upto to her,
learnt from her she knew how to pick me up when I was feeling down.
She was always there for me when I needed her, always ready to take my
problems on top of her own. She knew what to say she didn't have to
ask and wonder why I was feeling the way I was. Kira's strength and
courage kept other people going, there is only so much crap you should
have to go through in life and Kira went through it a dozen times
over. Yet she would always come out stronger on the other side and
thats why people admired her and will continue to admire her in
death.
I can't put into words the amount of sadness I feel and how much I'm
going to miss her and I'm sure this is the case for many others that
knew her. We should be happy for Kira, her suffering is finally over.
She is free to swim with dolphins all day long, I say this because
that was our promise when we had our new lungs. We promised we would
meet up in California for a holiday then go swimming with dolphins
together. I still know this will happen, not right now, but I know
shes waiting for me somewhere. I'm not really sure what else to say
because whatever I do say won't sum up how amazing this girl really
was.
A poem she liked
If I have never met you
I would have never loved you
If I had never loved you
I would never miss you
But I did and I do and I will...
See you in heaven my sister, where I know you will be waiting to hold
my hand,
until then your in our hearts forever.
Luv ya loads sis
xXx
Kira Broeder
15th February 1987- 26th September 2004
Her body is at rest but her spirit will live on...
Jon's Own Words
Hello-
It's Saturday morning at 5:45 a.m. I've been awake since 4:30 a.m.
when they came in to draw blood. I can't figure out the concept of
hospitals- waking you up every 4 hours to check levels, heart rate,
respiratory, blood pressure, IV bag, whatever. How are you supposed to
get any rest.
I've played 4-5 hands of solitaire- now I'm writing this letter. I
don't even know who it's too. Maybe myself.
I've been dealing with Cystic Fibrosis since birth; it's a genetic
disease that affects each of its victims differently. Some may only
have a mild case where they are more like asthma, normal weight gain.
Others have both respiratory and digestive problems. Both types can
vary from mild to terminal, and can worsen over time.
I was diagnosed at 3 years of age. My family couldn't figure out why
my stools were so bad, and I was always geting colds. I was admitted
into the hospital with pneumonia and they began running tests.
Once I was diagnosed with CF, my doctor (who shall remain anonymous)
wanted to send me to Indianapolis, Indiana. I would be away from
family in a hospital to be used for testing (guinea pig).
Now realize testing is vital, but to remove a child from his/her
family is unquestionable. To make things simple and short- that doctor
was removed from my care. His replacement was a very wonderful M.D.
Though he has since passed away, I will never forget him. Dr Donald
Hoffman was the best thing to have happen to me. I relaize he wasn't a
Pulmonary Specialist but he stated very in tuned to what he felt was
best for me.
The one thing I can no stress enough was the he let me be a child.
Many times CF children are "sheltered" because everyone is afraid they
will become even more sick than they are. Use common sense, when it's
cold, dress for cold weather, when it's raining stay inside. It's
really very simple. DON'T EVER prevent your child from doing an
activity because you're afraid they will worsen in health.
I CAN NOT sress enough how important exercise is to a child/adult with
CF. This makes the lungs and respiratory system work ad work hard;
that is in my opinion the best thing a person with CF can do. Most
appetites will of course increase with an increase in physical
exertion. Therefore weight should it nothing else maintain, not
decrease. I'll talk about diet later.
When Dr. Hoffman became my physician, his prognosis was that he would
do the best of his ability to make my life normal and comfortable as
possible, but he said he didn't expect me to live to the age of 10. If
I did live to 10 years old, my lungs would be equal to those of a
75-year-old man. Doesn't sound promising does it.
What he didn't realize was just how bull headed or stubborn of a
patient I was gonna be. And by that I mean I'm a fighter. I've never
gave up and will never give up. At the time of this writing I'm 29
years old. 19 years past my original life expectance. I've been
married and divorced. Had all the ups and downs of childhood and
adulthood. I work full time and currently live alone. Unless you count
my rottweiller, Dante.
My soul reasin for writing I think is to make others aware of what
they can do with their lives. They don't have to be "sick". Many of my
friends didn't ever know about my CF until 7-8 grade, and that was
only because one of my teachers knew I was doing a local TV interview
along with my Pulmonary Specialist. My teacher asked my permission to
show it to the class. My understanding was that she used that
interview for many years to her class to show students that they can
be/do whatever they put their minds to.
I'm gonna take a short break here to give my hand a rest. It gets
fatigue when it's got an IV...
Jon never finished his story. He lived to be 33 years old. He did
everything he ever wanted to do. Except live to see the cure.
Born 03-15-1971 Died 10-13-2004
Your loving Mother, Sister, and family.
Dreamweaver
Donald L. Stanger III
February 26, 1970
August 21, 2001
Donald meant everything to me. He would always make me laugh making a
joke or two.He loved to play tricks on everyone. He was also very
loving and had a warm heart. Donald was loved by his family and
friends. He has a sister named is Michelle. She now has three kids and
got married a few years ago to Mike. He has a daughter too. They now
have a nice house in Papillion, Nebraska. Donald's niece, Zoe, ment
the world to him. She would always called him uncle donald. I am very
thankful i met donald's family. They are all nice. Donald was born in
Nebraska. He was born with Cystic Fibrosis. Donald was very healthy up
until his teenage years. He had a best friend and her name was Amy.
She also had CF. After she died he stopped doing his medicine and went
"down hill" after that. She passed away in November 1991. Donald would
always go down to platsmouth were Amy is buried and put red carnations
there. Donald had on his licence plate "Amyeyes." It was in memory of
his friend amy.There was also a country song called, "amys eyes." One
of his favorite songs.
He ended up on oxygen all the time and eventually went on a waiting
list for new lungs. Donald was called in at camp one day saying that
they had the lungs. But it turned out that the lungs were damaged.
Donald was involved with "Bowl for Breath" for CF. Donald loved beanie
babies. He had over three hundred and fifty plus. Transplant costs
tons of money so he decided to raise money and sell his beanie babies.
He made a website and sold them on there. His dad, Donald, owns a
scuba shop and donald would also sell his beanies there. Donald went
to classes to learn how to build websites. He also put his own
computer together. He was a very smart person. Donald made a wish from
the make-a-wish foundation and he went to the superbowl and met boomer
and another football player. He also studied the stars and planets. He
loved the sunsets and sunrises. He would always keep up on the weather
everyday. Donald went to a camp called "Camp Jenney." It was a camp
for people with CF. He loved going there and enjoyed camp fire. That
was one of his favorites. He was involved with a game called; "Were's
Waldo?" He looked exactly like waldo too.
In 2000 they had kareokee. He sang "Oops!" I did it again" by britney
spears. He loved her and would dress up like her on halloween. I was
not there but I would have loved to have seen that in person.
I met donald back in October 1998. I met him in mIRC a chat program in
the CF chat room. He had two names. One was dreamweaver, beaniegod and
donskies. We chatted every day. He came down in April 1999. He drove
down and stayed at the park inn. We went to disney world and epcot. We
met two of his friends there. We also went to the beach and drove to
Orlando to meet grandma bev. She is with the Cystic fibrosis pharmacy
in orlando. When he went back home and kept in touch on-line and wrote
to each other often. He would play games on-line and win all the time.
Donald was the type of person that stayed up all night and slept
during the day. I finally flew up to nebraska to meet donald's family
in january 2000. I had a really nice time. We went out to eat almost
everyday. I met Donald's two best friends Jessica and Jason. Two of
the nicest people I have ever met. I remember when the four of us went
out to eat at Longhorn and went out to see a movie. We had some good
times. In april 2000, Donald flew down here and stayed at my house. We
went to disney world again. This time my friend Alanna went with us.
We had a aweasome time! When Alanna and I went on space mountain like
four times and after we got off the ride we seen donald sitting in his
wheelchair passed out. Alanna thought he was dead. I walked up to him
and said that she thought you were dead. He started laughing so hard.
The night before we went shopping at wal-mart and donald bought a
small bottle of wild turkey and drank it all. He sat there laughing so
hard his face was purple. Before you know it he was passed out on the
pull out bed in my room. He somehow managed to put his bi-pap machine
on too. One night donald had something he wanted to give me.
He took it out of his bag he used to carry around all the time. He was
shaking like a leaf. It was a engagement ring. I did not know what to
say so i said, "yes." That night we drove to the ale house to eat
dinner. On the way I decided I did not want to get married because I
was not ready. After we ate dinner I told him that the next day we
would go out and get friendship necklaces. That night after dinner we
drove down to the beach and just stood there holding hands in silence.
Then our song came on. It was "amazed" by Lonestar. We held hands all
the way home.
The necklaces we bought was the verse from the bible. It said, "May
the lord watch between us while we are absent from one another." We
also got glamour shots done of us and seperate ones. I am so glad we
got those done of us. My mom loved donald and he would always make her
laugh all the time. In October 2000, I flew up to omaha again. For
halloween he dressed up as britney spears and I was a mental patient.
We went out to the bar that night and went to a few of his friends
house. He loved halloween, thanksgiving and christmas. We shared
wonderful memories together. He gave me a charm that was in a shape of
a heart with a oyster pearl in it. I still have it too. I flew back
home in december and we talked everyday on-line and on the phone. On
June 27th 2001, I flew up and I stayed until august 18th. That day I
got there Donald had a doctor's appointment. I went with him and he
was going to be admitted but they did not have a room for him. So we
went home and all of a sudden he could not breathe. He then called an
ambulance and I went with him. He had a bad night that night. He was
seeing things too. He wanted me to put a cross on his door so I took
some tape and put it in a shape of a cross on his door. The next day I
went down to the gift shop and I was looking around for anything to do
with a cross. I seen a cross charm and bought it for him. I went
upstairs and told him to close his eyes so he would not peek. When he
opened his eyes he had the biggest smile on his face along with tears.
That night I layed next to him in bed and put his head on my chest. He
fell asleep fast. I never left his side and stayed with him everyday.
I bathed him, dressed him and took care of him. Some of the nurses
were too lazy. Many nights he could not get to sleep. I did not get
much sleep at night because he was in pain or could not get to sleep.
When I wanted to get some rest I would go over to Jessica and Jason's
apartment. He lost his appetite and slept most of the time. I knew in
my heart he was not getting better. He had his good days and worse
days.
One time when I was in the hospital, Donald sent me some real purple
roses. I was so happy that day. I still have them in a special rose
box that I have. I have all his letters he wrote me and many pictures.
His favorite thing to eat while he was in the hospital was red jello
or choclate shake. His mom brought up his computer one day so he could
do his website and check his e-mail. I kept updated on cystic-l to
everyone to let them know how he was doing. His room was so
"cluttered" with stuff and his computer that it was hard to move
around. Just like his room at home. I have pictures to prove it!
Hahahaha! One night the nurse brought in a roll away bed so I could
sleep at night. The way he would sleep was he would have the table
across his bed with pillows on it. Many nights I would go in the
chapel to cry because I could not let him see me cry. Donald had a
feeding tube and every night at home he would hook it up and put his
full cans in there. He was unable to do it in the hospital so the
nurses did it for him. That is how he kept his weight up. But this
time while he was in the hospital he was loseing a lot of weight. On
the 4th of july, donald was not doing well that night. But he told me
to go to his house and light up some fireworks. He bought these two
frog ones that jumped when you lite it up. I should have kept one but
I did not. I thought they were cute. In august jessica and jason got
married. I caught the bouquet of flowers that she threw from the
stairs. Camp Jenney started that month. It lasted for a week. Donald
told me to go and have a fun time. I had a blast. I met many people.
Mike and Erin were close to donald. I became real close friends with
them. At camp I made a thing for donald. It was on a sheet and I put
on it "Friends Forever." That was the camps song at the last day.
Everyone would stand in a circle and they would play that song. I had
everyone sign there names on it. When I showed it to donald he loved
it. Donald would always joke around even when he was sick. He could
put a smile on everyones face.The day before I had to leave donald did
not want me to go.
On august 18th, I left to fly back home. The next day I recieved a
call from donald's sister saying that his white count was high and
that the doctors said he did not have much time left. I was at my
dad's house when she called. The next day he drove me home. The day
before donald passed away, donald's dad called me and put the phone up
to donald. He knew it was me on the phone. I was talking to him but he
was saying something over and over again. I could not understand him.
The next morning Donald's dad called me to tell me that donald passed
away peacfully with his family in the room. It was all a blurr that
day. His dad flew me up a few days later for the funeral. The day I
got there was the veiwing. When I walked in to the veiwing his dad
told me what donald was saying on the phone to me. His last words was
"I love you" over and over. I broke down in tears when he told me. I
had a bag with me with two frogs and two beanies that were the bride
and groom plus the friends forever thing I had made for donald. I put
that all in there. He had his favorite blanket in there along with his
beanie buddy Halo 2. They did a wonderful job on him. He has the charm
friendship necklace we bought and the cross with him. He had a lot of
flowers there. His dad always called him "tiger" so he had orange
tiger lillies on the casket. Donald's sister gave me his favorite
vikings jacket. The next day was the funeral. They played "Wind
beneath my wings" and "angels in waiting. I lost it when they played
wind beneath my wings. After the service was done at the church we all
went down to the cemetery. I sat in the front with donald's sister.
When the preist was talking a blue carnation fell on the ground in
front of me. There was no wind that day and it was not hanging down
either. I still have it today. That evening everyone was invited for
food and to watch the huskers play. Donald was a big fan of the
huskers. They won that day too. After that I went over to his house
and picked up what I wanted. Donald had given me his class ring. A
year later his tombstone was up. It has his picture on it and it says
"An angel among us."
I went up in August 2002 to visit everyone. Donald's sister had taken
all the flowers from the viewing and dried them all out. So we went to
a craft store and she bought a round glass thing and put them in
there. It also has a nice lace thing around it tied with a bow. I went
up one time and put a single white rose there and I had two husker
balloons. I wrote on it and let one go and left the other one there. I
had a nice visit with everyone. I stayed at Jessica and Jason's house.
When donald was here at my house I told him that if anything happened
I would write a story about him. I kept that promise. It took me a
while to write it all out but here it is. A year ago I met this lady
that reads the cards. I was at my dad's house when I met her. I was
talking to her and she said that she reads the cards. I did not tell
her anything and that evening I walked over to her apartment. The
reading started and she said donald right away. She told me that he
was telling her about the angel box that I have when I bought while I
was in the hospital with donald during his last times. No one knew
about it but donald. He also told her that I have his class ring in
there and that heart shaped charm with the oyster pearl in there too.
I broke down in tears. My mom did not even know about it until I
called her and told her to go in my room and look at it. I recently
got a reading last year in december. My mom and I was putting up the
Christmas lights and they kept flickering off and on and we were
trying to get them to stay lit up. My mom went out and bought new ones
too. They still were doing the same thing. After a while they finally
stoped flickering. I was not even thinking about the christmas lights
on my tree flickering and did not think anything about it. When the
reading started she said right away that she was seeing christmas
lights flickering. She said that it was donald messing around with us.
My mouth dropped open and I started to cry. I did not tell her about
our christmas lights flickering and why would I anyways. I know he is
always around me and never left me. It sure sounds like donald joking
around.
I made a CD in memory of Donald. He loved the eagles. I gave it to his
family and friends. Donald had dedicated a song to me. It was called
"More than that," by the backstreet boys. I never knew he did until
jessica told me. Everyday I feel his presence around me. One night
while I was visiting donald up in nebrasksa he was thinking of
something to give to his dad to put on his license plate. He thought
of "divrdad." I thought it was perfect.
Donald will be missed by us all. He was loved by his family and
friends. He never let CF get him down even when he had his bad days.
He was in love with me. I told him that no matter what we will always
be married in our hearts forever. We had nicknames for each other. It
was Donskies and Pumskins. He said that I was his angel and now he is
an angel watching over me and everyone else. Every time I see a
butterfly I think of Donald. I get a lot of signs from him letting me
know "Im here and never left you." Donald left a legacy that will
always live in our hearts and minds. He always listened to me or
anyone else that needed to talk. He left this world to go back home.
His journey has just begun. Until we meet again. Donald, "I LOVE YOU
TOO."
Love forever,
Andrea
a.k.a.
"Pumskins"
"This story is dedicated to a wonderful friend whom we will never
forget. To his family and friends..remember he never left us."
A Tribute to Owen
Five years ago at a party, I saw the sweetest face I had ever seen. I
was immediately drawn to this handsome man in the green pullover.
Shortly after, I learned that I had caught his eye as well, and before
you knew it we were inseparable. Early on I learned that Owen had a
life-threatening illness. From that point on we fought it together. It
was our battle, not his alone. His strength and bravery only made me
love him more.
On May 4, 2001, I married my soul mate. It was and will always be the
most amazing day of my life. Owen and I shared many beautiful times.
Though our time was cut short, I do not feel cheated. How could I? I
experienced the kind of love that some people never find in a
lifetime. Owen made such an impact on so many lives. Thought it is
easy to ask "Why?" I can’t get caught up in those types of questions,
for that is not for us to know.
What I do know is that because of Owen and Robert, as well as other
children and adults like them, doctors are learning how to better
manage the damaging effects of Cystic Fibrosis. It is important to
realize that CF was only a small part of Owen. It was not all of him.
Despite the suffering and sadness of this time, I will find comfort in
the knowledge that my love can breathe easily now. He used to have a
dream that he was able to run freely again. Now his dream has come
true.
I recently received an email which quoted the Dalai Lama, which said
"Remember that the best relationship is one in which your love for
each other exceeds your need for each other." That couldn’t be more
true of Owen and I. As much as I want to keep him here with me, I must
set him free to ease his pain. I know he is all right, and in time I
will be too, because he could not be at peace if I was not
okay.
So I ask all of you today to remember all the qualities that made us
all love Owen, his sense of humor, his sarcasm, his bravery, his
spunk, his thoughtfulness and his generosity. To all his friends and
family, please know love lives on and so does Owen.
SOOT, A Man Of Great Character
How do you pay tribute to a man who was an inspiration to all who knew
him? Words cannot describe what kind of person Soot (Mark) was. He
cheered us up when we were down, always put others first, and gave so
much of himself to others, that it is hard to think of anyone to even
compare. He will always be greatly missed and will remain in our
hearts forever. We love you Soot!!!
Soot's Rules for Life
1. Avoid yellow snow. Definately don't eat.
2. If you pay for food at a drive-through, make sure you wait around
long enough to pick it up.
3. Don't confuse your laundry detergent with your beer.
4. Don't eat armadillos, they may carry leprosy.
5. Don't eat carp from the Love River.
6. Don't wear cheesehead hats on your head. Don't wear them at
all.
7. Don't put lotion up your nose, it won't help.
These rules were posted by Amy, a long-time friend of Soot's. They
truly are words to live by.
"My Sunshine"
Lacy Joy Marie Pohlman
Born December 4th, 1984
Passed February 24, 2000
"I love you Lacy"
Lacy was nothing but sunshine in my life. Her smile, love and her
laughter could brighten anyone’s day. I met lacy at Camp Sunshine in
1992. That is were I also met Kristen Mathis. We all were "circle of
friends." No words can describe how close our friendship was. Some
days she would not smile because she was not feeling well, but I would
always make her smile to cheer her up. Lacy has two brothers. She
sometimes never got along with them because they would pick on her,
but somehow managed to put up with them. Jerri and Rich are Lacy's mom
and dad. Two of the nicest people I have ever met. Her mom is very
sweet with had a wonderful heart. Our moms got along and were pretty
close friends. Lacy's dad is the greatest; he can make you laugh by
telling you lots of jokes. He makes me laugh. He always tried to make
Lacy laugh to make her cough. She never liked to cough. When Lacy
would laugh she would make this "hiss" noise, it sounded like a snake.
I always laughed at her when she would do that. We had a lot of good
times together. Lacy always talked about her Cystic Fibrosis. She
would share her stories to other kids that were worried about it. She
even shared some of her feelings to me. Lacy was different from
Kristen. Lacy was down to earth person with a sweet personality.
Kristen was the "flirt" and never talked about her CF. Lacy and I
became close friends in 1997. The month when Kevin from childlife left
from the hospital, Lacy's dad took a few pictures of her and I with
Kevin. All we did was laugh. Lacy's dad told a joke to lacy and I one
day. He said, "wanna hear a dirty joke?" Lacy and I looked at each
other and rolled our eyes. He said, "A white horse fell in mud." I
laughed and Lacy just said, "Oh god!" One of Lacy's favorite drink was
seven up with cranberry juice. I remember when Lacy and I were in the
hospital once again, her family was going out to eat at Red Lobster. I
went with them that night. It was a lot of fun. It was one of the good
times that Lacy and I spent out of the hospital. I gave lacy a hug
when we all walked out. I wanted to give her one because I never could
get the chance to hug her. We both were in isolation because we were
multi-drug resistant. If the nurse or doctors ever caught us we both
would be in trouble. Lacy could not go to school because it would make
her tired. She did a lot of home schooling. She was on a waiting list
for new lungs. One of her goals were to go to school after she got her
lungs and do other things that people can do in life. She struggled
for breath a lot, but never seemed to let her CF get to her. She was
also on oxygen 24 hours a day. Lacy and Kristen were best friends
before I met them. Kristen's mom told me that when Kristen went into
the hospital Lacy would be happy that she was there. When Kristen got
older she had many friends and seemed to fall behind on Lacy. It made
Lacy upset too. It was the age difference and Kristen was older. I
told Lacy one day that she would always care for you and she will
always be your best friend. I also said to her that no matter how
"old" I get I will always be your best friend and I will always love
you.
Last year I dedicated a song to Lacy. It's called "Stay the Same."
It's by Joey McIntyre. The reason why I dedicated this song to her was
because for one I love her and two she will always "Stay the Same" in
my heart forever. Late at night while Lacy and I was in the hospital
we would go downstairs to get something to eat. She would get her
grilled cheese and her seven up along with her cranberry juice. I
would get my cheeseburger with french fries along with a Pepsi or a
mountain dew. That was our fun for the night. A few years ago, when
Lacy and I were not in isolation we would go down to the cafeteria and
eat there. She would get a turkey sandwich. We both sat down and
started to talk and eat. She would be sitting there for about fifteen
to twenty minutes spreading the mayo on her bread nice and neat. I
never understood why she would not just put it on there and eat it. I
always asked her that. Her reply was "I don’t know." She was funny. I
really miss her a lot. Sometimes she would eat like a "bird." She was
sometimes on the news a lot about her CF. She also had a G tube due to
trouble with her digestive system, it helped keep her weight up. When
Lacy and I would see each other we would say, "It's what's her face."
We joked around about it. Lacy and I always joked around about that CF
thing that Kristen and I started a while ago. "Don't touch me, I might
get CF." That went on for a while. Lacy also liked bingo and she would
be on the TV at the hospital. I won a big bear one night. I wanted to
give it to Lacy and she said "Are you crazy, my mom would say no way!"
That is what her mom did say to her. I think I gave it to someone else
that needed it. The last time I had seen Lacy was April 1999. That
month I shared the story to Lacy that I wrote about Kristen. Lacy
could not figure out how I could remember all the dates I shared with
Kristen. It was funny. We also made some necklaces that month too. It
was Lacy, Eric and Felicia. We first talked about what was on our
minds and how we felt. Lacy and I talked about Kristen. I had a few
tears in my eyes and lacy did too. We wanted to give each other a hug
but we could not. I had to leave that day so I said my good-bye's to
Lacy and everyone else. A few months later, Lacy was in the hospital
and I talked to her one night for about an hour. I talked to her about
her transplant and how she felt about it. She was happy yet scared. I
told her that she would pull through and I was with her. I told her I
loved her too. Lacy went up to Ohio in September for her transplant.
Every thing was going well for a while. Lacy turned fifteen years old
on December 4th 1999. She had a nice party with Dr. Howenstine and
everyone else too. In January Lacy went into the hospital. Her mom
kept in touch with everyone through e-mail. On February 9, 2000, Lacy
was put on the vent in ICU. We kept Lacy in our prayers. She became
inactive for transplant because her lungs were so fragile. Lacy's mom
sent some e-mail on February 24th 2000. My grandfather passed away
February 24th 1997. I did not know that Lacy passed away until the
next day when I talked to her mom on AOL. I was very shocked and sad.
Lacy's last words were " Tell everyone I love them and thanks for
loving me." I told Lacy's mom to whisper in Lacy's ear before she
passed away. I told her mom to tell Lacy that I loved her and I was
thinking of her. Lacy shared a lot of laughter and good times. She
never gave up. Lacy lived a rough life, but she was my best friend and
"my sunshine." She was very special to me. I told myself a few weeks
ago that I would write a story about her. Today is March 8th, 2000. I
admired her in many ways. She struggled to say hello to someone by
taking a big breath in, but always smiled and held on. Lacy is with
Kristen now. I can just see them smiling, running, breathing, flying
and singing like angels. I know they are both watching over us each
day. Although I cannot see them or touch them; I know I can feel their
love around me each day. They both were truly a hero that walked among
us all.
Lacy on that one sweet day that God took you home he lifted you into
his arms and set you’re flying free with Kristen. There is no mountain
to high for you to climb, no river to wide for you to make it across.
You are now free "My sunshine." Lacy and Kristen I love you both. You
both were my angels sent from heaven above. We will always be "circle
of friends" forever and always. Until that one sweet day, I know you
both will be there to greet me with a smile and say, "welcome home."
For now, I keep you safe in my heart and thoughts. You're the wind
beneath my wings," Lacy. I will always love you. Lacy, you will always
"Stay the Same." Fly free.....Lacy.
Love your sister & best friend,
Andrea Basto
xoxoxoxoxoxo
Jerri, Rich and kids, this is for you. Thanks "mom" and "dad" for
bringing Lacy into this life. I'm always with you. Here is a poem that
makes me think of lacy now.
My Butterfly
Sweet butterfly, my butterfly,
Fill my days with your wings and your beauty.
My hero, my butterfly, open Your love to me,
spread your colorful wings to me.
Sweet butterfly, my butterfly,
Fly above, let yourself be free.
My angel, my butterfly, rise high to a place
were flowers bloom, a scented place filled with God's love.
Written by: Andrea Basto
My angel
Kristen Marie Mathis
Born: July 7, 1981
Passed: December 21, 1998
"Fly free...Kristen"
I went to a camp called "Camp Sunshine”, a camp for people with CF and
asthma. I really enjoyed that camp. There was this very sweet girl
that I met back in June 1992, her name was Kristen Mathis. She was the
sweetest girl I had ever met, I will never forget her. Our counselor
was Stacy. Kristen and I had to make up a name for our group. It was
called, "Stacy's sweethearts." Kristen was a very bright girl. We
became really good friends. When camp had closed down, I never heard
from her again. A few years past, it was November 1994, when I was
admitted to All Children's Hospital. I was lying in bed when this girl
walked by smiled and waved at me. I waved back. I was not sure who she
was. So, I asked my nurse if I could go over and talk to her. I walked
over and sat down and talked. Her dad was in the room too. Once I told
her my name, she knew me right away and I knew her too. We asked to be
roommates. She was the best roommate I had ever had. Kristen and I
talked every day. We also loved to play pool and bingo. Bingo was
played every Thursday at the hospital. Well, as the weeks past on, I
had to leave the hospital. She gave me her address and her phone
number. I also gave her mine too. From that day on, we wrote to each
other every day. Kristen never really liked to talk about her Cystic
Fibrosis. She was on a waiting list for new lungs. She always hid the
pain by sharing her sweet smile. I never knew Kristen refused three
lung transplants. I found this out in 1998 last year from her mom.
Kristen wanted to wait until after she graduated to get her new lungs.
I could understand why. I always worried about her. Every time she
went into the hospital, I always went to visit her. I cared for her
alot. We always talked on the phone every day. She would always talk
about "boys." She was a "flirt" let me tell you! Kristen also went
through a lot of sinus surgeries. When I first met her, she had to
have sinus surgery. I remember that night very well. Kristen's mom was
in the room beside her as well as her grandmother. I was really
worried about her when they brought her in the room. I sat by her bed
and watched her all night. Her oxygen was going rather low and I told
her to take some deep breaths. She did. She was in a lot of pain. I
felt like I was her guardian angel. Just watching over her. Kristen
and I were always close. No one could ever keep us apart. We were
stuck like "glue." Kristen's mom, Sharon, is the sweetest mom I had
ever met. She loved Kristen more than life itself. I loved Kristen
with all my heart and to this day, I still love her and always will. I
remember one day when we had first met, we were really bored. We had
decided to put signs on our doors. We put "We want nurses and we want
them, NOW!" Kristen always wanted everything now. It was so funny. I
remember one year patients with CF could no longer be roommates
because of the “bugs” we could get from each other. It was really hard
for us. We always joked around about it. Kristen and I started to say,
"Don’t touch me, I might get CF.” We said that for years. I remember
her favorite saying was "Your so crazy." She always had that little
country accent. The doctors did let us go over and visit each other.
Kristen would always tell me to go over and eat lunch with her. I
would bring my lunch tray over and eat with her. She always had her
Pepsi and I always had my mountain dew. One thing she always loved was
chocolate shakes with chocolate ice cream. Those were really good. I
always liked spagettio's and Kristen always thought I was gross for
eating those. Kristen had sent me this friendship necklace one day. It
said, "Together Forever." I wore one half and she would ware the
other. I still have the necklace today. She had lost hers one day and
told me that she would go out and get another one. Well, she never
did. I guess she forgot. That was okay though. As long as we had our
friendship and each other. In April 1997, I had invited Kristen to
Grad Night. She had been put in the hospital. I had to invite someone
else. I had fun, but I would have had more fun if she went with me.
One thing Kristen would always forget was my birthday. It was funny. I
always knew hers. In September 1997, I was in the hospital with
Kristen. Kristen told me that Lacy was here in the hospital. So,
Kristen and I walked over to see lacy. Lacy did not talk much, but
Kristen told me that she talks a lot. She seemed shy to me. Lacy,
Kristen and I was "Circle of Friends." A few weeks passed on and
Kristen went home. Lacy and I were still in the hospital. Kristen had
a doctor's appointment one day. She came to visit us that day. Well, I
was sitting in my room and here she comes in her black and flowered
dress all dressed up. She had dyed her hair a strawberry blonde at
that time. I liked it but I liked the normal color of her hair. That
day Kristen, Lacy and I went downstairs and ate in the cafeteria. It
was a lot of fun. I was there with Kristen's mom too and all we did
was laugh and talk. We also took silly pictures of us standing in
front of Kevin's office because he had left that year. He was the
child life guy, a really nice guy. Anyways, the pictures were of us
standing in front of his office pretending we were crying. It was
funny. After a few weeks passed on and months went by, Kristen and I
still wrote to each other every day. The last letter I received from
her was December 1997. Kristen and I still talked on the phone a lot.
From that time on, I knew something was wrong. Kristen never told me
what was wrong. She did not want anyone to worry about her. In my mind
and in my heart, I knew she was very sick. The New Year came. It was
1998. In the month of September 1998, was the last time I had ever
seen Kristen. It was one crazy month. That month hurricane George
came. Every one that worked in the hospital had to spend the night
there. One night Kristen's mom came to visit her. I was in the room
with Kristen. We were hungry so we ordered pizza. Kristen and I went
downstairs to wait for the pizza guy to come. After he came we walked
back upstairs to eat. When we were done, Jennifer the night nurse
walked in and talked with Kristen and her mom. It was about Kristen.
Kristen was not listening and she just watched TV. After that her mom
left. I was still in the room. One day I remember when I gave Kristen
a teddy bear that I really liked, I had bought one too. She had the
biggest smile on her face. A few years ago, I had also given her a
frog. She loved frogs! One other night, she asked for a chocolate
shake.... well she went into one of her coughing spells and that came
up. I had to get her nurse. She never seemed to keep anything down.
One night we watched "Titanic." Towards the end of the movie,
Jennifer, Mary and I started crying. Kristen was laughing at us. The
night before watching Titanic, we colored in these pictures of
butterflies. She had colored in a butterfly and a flower that she gave
to me. I have it hanging on my wall today. That was the best month I
spent with her. I was discharged from the hospital. I told Kristen I
would call her that night and I gave her a hug. We talked for a long
time. The next month, October 1998, I was admitted again because I
was going to have surgery on my kidney stones. I was there for two
weeks. Well I was put in isolation because I am multi-drug resistant.
After I left the hospital, Kristen was admitted. She had been in that
hospital for three and a half months. In November I called her. It was
November 5th 1998, and Kristen was not doing to well that night. I
told the nurse that I had her in my prayers and to let her mom know.
I called the next day and talked to Kristen's mom, she had made it
through the night. I was happy that she did. I had a doctor’s
appointment that month and I went up to see Kristen. I only saw her
feet in the blanket moving around. Eric, from child life, was in the
room talking to her. I knocked on the window and saw Eric and he told
Kristen I was there. I could not go in because we both were drug
resistant. I wish I could have gone in there and talked to her and
tell her how much I loved her with all my heart. It was very hard.
Then Eric came out and I talked to him. Sharon, Kristen's mom came out
to talk to my step dad and I. I told Kristen’s mom to tell her I loved
her and give her hugs for me.
December 21, 1998, I received a call from one of the nurses from all
children's. It was around 11am in the morning. The nurse told me that
Kristen passed away this morning around 9am. All I said was "WHAT?!?"
Those were the words that came out of my mouth. I was shocked. She
also told me that Kristen's mom specifically told the nurse to call
and tell me. I was calling everyone that morning. I cried all that day
and slept all day. A few days passed and I went over to my dad's house
for two weeks. The funeral was December 24th. The night before I was
calling one of the night nurses, Mary who we called “Shorty”, to see
if she was going. She took me out to breakfast that day. Our whole
conversation was Kristen. I am kind of glad that I could not make it
to the funeral cause I would not want to see her that way. She would
want me to remember her the way she was. "Good old Kristen." Lacy
could not make it either. I miss Kristen more than anything. She meant
the world to me. I am in touch with Kristen’s mom every day. I am in
the hospital once again and today is April 29th 1999. I was thinking
of Kristen and our life we shared together and I decided to write this
for her and her mom too. I just got all the letters that I wrote to
Kristen and the teddy bear and frog I gave her. I can smell her scent
on them. I always remembered her scent. I took out the frog and teddy
bear and held them close to me and cried. I also got a bag full of
candy from Sharon and a card with Kristen’s picture in it. It also had
a balloon on it. Sharon had also given me some "Stuff" that went on
during Kristen's funeral service. Kristen meant more than anything to
me. Her smile, laughter brightened everyone's day. Kristen was a very
special friend to me. We always talked about everything. It is hard to
be in the hospital right now, but I know her spirit is still around
and that she is watching over me and everyone else. She is "My angel."
She is with God. She is laughing, breathing, and running free. God
called her too soon, it was her time. He did not want her to suffer
anymore. She saw God and closed her tired eyes and went into the
light. Right now I can see her in this gorgeous white long gown with
wings and a halo above her. She is beautiful. She had a happy spirit.
She never wanted anyone to worry about her.
Kristen, I am writing this story about you because I love you more
than anything in this world. Our friendship meant more than anything
to me. For now, I keep you in my heart and thoughts. You will always
be "The Wind Beneath My Wings." Fly free and rest in peace, Kristen. I
love you...forever!
Love your sister and best friend,
Andrea Basto
xoxoxoxo
This is for everyone that loved Kristen. Thank you for being more than
a friend to her. This is for you Sharon, "MOM." You’re the greatest. I
love you always! I would always like to add this very special poem
that I wrote to her in one of my letters to her.
"THANK YOU"
Thanks for the fun that we've shared such a lot of, for the laughter
and conversation. Thanks for the times when I’ve needed a hand and
you've been there without hesitation. Thanks for your wisdom and
thanks for your strength. Thanks for the joys you've brought me. I've
learned just how true friendship can be. It means so much to have a
friend as special as you were to me...thank you! You were "My angel."
Kristen...I love you and thanks!
My special song that makes me think of Kristen is "I’m your angel" By
Celine Dion duet with R. Kelley.
Click here for the story.
John Goodlad, who lost his battle with CF in Aug. 2006, shared his
story with us when he was 40. He passed away at 43 years of age. His
courage and dedication will continue to encourage and inspire all who
knew him. Here is his story:
John G.
Hi, I'm John, I'm 40 years old and live in northwest Wisconsin about
30 miles east of St. Paul, Minnesota. In October of 1963, at 2 months
old and in the hospital with pnuemonia, I was diagnosed with Cystic
Fibrosis. I am listed for lung transplant but inactive at the
University of Minn. By way of introducing myself, I wanted to share my
current theraputic regimine. For simplicity, I have done it in outline
format.
1)Daily med list:
A) Aerosol nebs: Atrovent (0.5 mg/2.5 ml, 4x/day), Cromolyn
(20 mg/2 ml, 4x/day), Mucomyst (10% 5 ml, 4x/day), Colistan
({Coli-mycin}150 mg, 2x/day, 28 days on/off).
B) Oral meds: Vitamins A ({Beta Carotene}25,000 u, 1x/day),
B complex(1x/day), B12 (1000 mcg, 2-3x/day) C (4 grams, 2x/day), D
w/Calcium (500 mg, 2-3x/day), E (400 u water soluble, 2x/day), K (5
mg, 1-2x/week) Zanta({Ranitadine 150 mg, 2x/day), Valtrex (500 mg,
1x/day), Flumadine({Rimantidine}100 mg, 2x/day during the winter
months), Ultrase MT-20 (25 / meals, 15-20 / snacks), Mucomyst 20% (30
ml oral, 1-2x/day), Miralax (1 scoop in 8oz water, 1x/day),
Diphenhydramine ({Bendryl}50 mg at bedtime), Nizoral ({Ketaconazole}
200 mg, 1x/day, 28 days on/off).
C) Metered Dose Inhalers: Advair (500 mcg, 2x/day), Nasacort
(aq as needed).
2) Vest use: 4x per day (morning/evening for 1 hour, two midday for
35-40
minutes). Frequency 10, pressure settings increase from 08 -
25.
3) Exercize: Daily for 30 minutes to several hours depending on the
activity. Activities include; biking (on and off road and indoor
stationary recumbant), snow boarding, cross-country skiing, snow
kiting, hiking, hunting, skating (ice and land), total gym. The gist
is that I am willing to participate in anything that gets my wind,
blood and adrenaline flowing.
4) Personal notes: I was seen at the University of Wisconsin at
Madison until I was 5 years old. I have been seen at the University of
Minnesota for the last 35 years. I have always taken a large amount of
enzymes and vitamins. I have always had good body weight, (currently,
at 5'-8", I weigh 170 lbs). I received manual postural bronchial
drainage from my parents until I was approximately 13, when it
appeared to become ineffectual. I was required to maintain a level of
activity as a replacement therapy. I used mucomyst aerosol
consistently until that time as well. Except for a bout of pneumonia
at 16, (which is another story for another time), I remained quite
'healthy'. Around 20 years of age, I restarted using aerosol nebs more
than periodically, as i felt the need building in my lungs and the
benefits were immediate. Primarily, I used Mucomyst. By the late
1980's, in my late twenties, I was doing nebs 1-2x/day (they included
Mucomyst, albuterol and gentamycin). In 1992, after a research, (NIH),
based bronchoscopy induced crisis (again, another story) I began using
the vest. After the initial crisis was averted, I began the routine of
using the vest 1x/day for 20 -30 minutes with my nebs. Gradually,
within 3 or 4 years, my vest use increased to 2x/day for 30 minutes.
In 1999, at 36, I developed an extreme exacerbation of pseudomonas
infection. I spent a year on and off home IVs with a rollercoaster of
recurring infectious exacerbations. The courses of IVs lasted from 5-6
weeks to several months at a time. After a year of continuing decline,
my FEV1 dropped to under 30%. I was listed for transplant. I
officially retired from a job as Technical Director for a performing
arts theater and made my daily theraputic routine my job. I can
honestly say that I have never added a therapy or med that I did not
feel a physical need to add. I was never 'gung ho' about using my vest
or partaking in deliberate exersize. In 2002, roughly 18 months after
being listed for transplant, I was inactivated from the list, having
regained a modicum of my lung function/health. My FEV 1 now hovers
around 50%. And my overall health allows me to continue to participate
in all the activities listed, and enjoy a relatively comfortable and
more importanly, FUN lifestyle.
5) Med notes: I have made numerous attempts over the years to curtail
my enzyme use without success. These attempts have included simply
cutting back, changing enzymes, changing the time relative to a meal
that I take the enzymes, changing my diet, and adding rolaids, tums
and straight bicarbonate soda to neutralize the stomache acid. I spent
the first 25 years or so taking a prophylactic sulfa drug, (gantanol
sulfate). As well as various introductions of oral antibiotics as they
came available and necessary. I have taken oral bronchodialaters,
(terbutaline sulfate and proventil repetabs) for many years, as well
as using metered dose inhalers, (atrovent, combivent, becolovent).
Since beginning a 4x/day regimine with nebs, those have become
superflous. I began low dose prednisone therapy (10mg/day) for
wheezing around 1996 and the dosing was increased to a crescendo by
late 2000, during my psedomonas exacerbation, and finally tapered off
in the spring of 2001. In late 1997, i had the first of several bowel
obstructions. It was relieved by a gastrografen enema with mucomyst,
oral mucomyst and rehydration with IV fluids. The cause of the
obstructions has been mucus build up in the lower bowel and
dehydration. After the fourth obstruction, the Miralax (equivalent to
GoLytley) was added along with chronic oral Mucomyst therapy. In June
of 2000, I became insulin dependent with manifest CFRD, at the time,
it was the most manageable of my symptoms. I used Humulin and NPH. My
sugars were controlled very well. By the time I was weaned off the
prednisone, the end of April 2001, my need for insulin was gone. I
continue to check my sugars periodically, and I have had no further
need for insulin since. I also got a port-o-cath installed in June of
2000. I used it for approximately 3 weeks for antibiotics at that
time. The port was used for a couple other courses lasting from 4-6
weeks, with the last IV antibiotic dosing in being in the spring of
2002. Except for flushing and blood draws during my annual Glucose
Tolerance Test, it has been unused since then. I am optimistic it will
get to see it's share of use, eventually. My cultures continue to show
high levels of pseudomonas, but the colonizations have not manifest
into anything dramatic since 2002. I have used Pulmozyme, from around
1995 to around 2000. I have found that, for me, Mucomyst is more
effectual. I have also used Tobi and for me, it comes up just short of
Colistan as an antibiotic that produces results. I do alternate the
months on/off with Colimycin and Tobi when it becomes
warranted.
6) Allergies: Adhesive tape is the only allergy that I am aware of
having. This was discovered around age 5 after a liver biopsy. At the
first dressing change, my skin very much wanted to come off with the
tape used to cover the incision. Since then, micropore, tegaderm and
transpore are the only tapes to which I haven't reacted. Even regular
bandaids, if left on for more than an hour, cause itchy redness and
swelling at the site.
7) In summary: I am very appreciative to have stumbled into this
group. I have learned more about the variance in degree of severity
and methods of managing care than I had known before. I have met and
realized numerous friend/kinships that would not have been possible
otherwise. And believe that my life is more full as a result.
John was a hero to all who knew him. He was a great friend. always
dependable, reliable and very loyal. You couldn't ask for a better
friend. All of us who knew him miss him dearly. There will never be
another guy like John G.
Matt McMahon
January 6th, 1978
May 15th, 2005
Please visit Matt's memorial video here:
http://www.onetruemedia.com/shared?p=362594ada69dd32c83f35
Dave P
Jason aka Gremln
Jennifer H
Cody
www.codydieruf.com
www.breathinisbelievin.org
Craig aka Chevymaster
Selina
Richard Shannon
Julie aka HappyCloud
Shaun
Rich
Mark "Chief" West
Jason aka Gremln
Jennifer H
Cody
www.codydieruf.com
www.breathinisbelievin.org
Craig aka Chevymaster
Selina
Richard Shannon
Julie aka HappyCloud
Shaun
Rich
Mark "Chief" West
A life well lived. That’s a good description of Mark’s life. Mark was born on December 17th, 1977 and left us on July 21st, 2007, at the age of 29. Mark truly made the most out of the life he had. This writing is dedicated to the life he lived.
Mark grew up in a rural area of SE Kansas. He had one older brother, Matt. And, it was Matt that gave Mark the nickname of “Chief”. His high school teachers nominated and awarded to him the Kansas State citizenship award. He graduated from Pittsburg State University in 2003 with a degree is Commercial Graphic Design.
He was fortunate to be able to travel and enjoyed two cruises. One to Hawaiian Islands and one to the Caribbean. He celebrated his 21st birthday in the Caribbean. His family decorated his room and the dining room table. The ship’s captain came to his table to wish him a “Happy Birthday”. One of the things that he did was to fly on a sea plane touring some of the islands. He also fished in Canada a couple of times and visited Disney World in Orland, FL a couple of times. He loved the trips,
Mark’s life was dedicated to fishing and hunting! He ate and slept fishing and hunting. All spare cash went towards fishing and hunting. Drove his family nuts with fishing and hunting. He has a deer head mounted in the family home. All hours of the day and night Mark went fishing and hunting. Even when he could barely breathe, he went. Just about two months before Mark left us, he got to go to the family lake house. It was the only time he ever got to spend a night there. The ground is extremely rocky there and Mark was extremely weak. He lost his footing on a rock and was too weak to stop himself from falling. His brother just calmly walked over, held out his hand and pulled Mark up. Mark said two words: “Damned rock.” The picture with this memorial is of the boat ramp where his lake house is.
Another enjoyment in his life was woodworking. He loved it! He had a shop full of tools and had high hopes of working in a cabinet shop of his own. He left some beautiful memories of his craft with family and friends.
Mark was an active member of the First Christian Church. He went to church regularly and he believed in God. He always knew that his life would be short and he knew where he was going when it ended here. He belonged to MIA – Men In Action.
One of the most important parts of Mark’s life was his connection to his internet friends. This was as necessary as food and water to him. It was very common to see Mark wearing his Therapy Vest shaking the snot out of him, smokin’ on his nebulizer pipe and typing on his computer as he chatted to his friends.
Mark received his new lungs on October 17th, 2006, and was looking forward so much to beginning to live the life most people do including employment, marriage and enough air in his body to be comfortable. The things most people take for granted and don’t think twice about. And, he thought he made it. He healed after his transplant and was feeling good. But, it was not to be and shortly after the first of January, 2007, a downhill slide began. Mark left us on July 21st, 2007, after a long, hard struggle. There is a drawer in the top of Mark’s casket where his friends and family could put small mementoes. In the drawer is a picture of his truck, a picture of his dog, a small porcelain lamb that he had given his grandmother, and a small fishing fly lure that a friend made just for him. His brother put a small card in the drawer that gave a Christian definition of his name. The Christian meaning of the name Mark is “Mighty Warrior”. It fits him to a T. No one ever fought harder or with more bravery than our “Chief”. “Mighty Warrior”
By: Barbara West
On Dec. 5, 2007, my son ,Eric Jenkins, passed away in a car accident. He was 23 years old. Eric had not been diagnosed until almost 17. He was an exceptional person, and not just because he was my son. He was an Eagle Scout, had an associate degree in education from LCCC, and had just finished the fall semester at Bloomsburg University with straight A's. He was majoring in Elementary education and would have started student teaching this September. More importantly, he was a kind, generous, and gentle soul who had accepted his disease with maturity and grace. He was 100% compliant with his medication and treatments, and because of this was able to achieve as much as he did in his short life. Perhaps God felt that because he was such a good and kind person, he would spare him the suffering that would come later in his life. It is very difficult to accept that he is gone, especially in this tragic and unfair way, but I know he is in heaven. There is no other place for such a sweet and caring young man with such a wicked sense of humor, a quick smile, and a kind word for everyone. Eric taught me that there is nothing that cannot be achieved with enough perseverance and inner strength. He was always a son to be proud of, and I miss my buddy more than I can bear sometimes. I cannot believe how much it hurts. We were more than mother and son, we were best friends and inseparable partners in the fight against his CF. The world has lost an amazing person, but heaven has gained a special angel. Eric, I will always love you and miss you.
Mark grew up in a rural area of SE Kansas. He had one older brother, Matt. And, it was Matt that gave Mark the nickname of “Chief”. His high school teachers nominated and awarded to him the Kansas State citizenship award. He graduated from Pittsburg State University in 2003 with a degree is Commercial Graphic Design.
He was fortunate to be able to travel and enjoyed two cruises. One to Hawaiian Islands and one to the Caribbean. He celebrated his 21st birthday in the Caribbean. His family decorated his room and the dining room table. The ship’s captain came to his table to wish him a “Happy Birthday”. One of the things that he did was to fly on a sea plane touring some of the islands. He also fished in Canada a couple of times and visited Disney World in Orland, FL a couple of times. He loved the trips,
Mark’s life was dedicated to fishing and hunting! He ate and slept fishing and hunting. All spare cash went towards fishing and hunting. Drove his family nuts with fishing and hunting. He has a deer head mounted in the family home. All hours of the day and night Mark went fishing and hunting. Even when he could barely breathe, he went. Just about two months before Mark left us, he got to go to the family lake house. It was the only time he ever got to spend a night there. The ground is extremely rocky there and Mark was extremely weak. He lost his footing on a rock and was too weak to stop himself from falling. His brother just calmly walked over, held out his hand and pulled Mark up. Mark said two words: “Damned rock.” The picture with this memorial is of the boat ramp where his lake house is.
Another enjoyment in his life was woodworking. He loved it! He had a shop full of tools and had high hopes of working in a cabinet shop of his own. He left some beautiful memories of his craft with family and friends.
Mark was an active member of the First Christian Church. He went to church regularly and he believed in God. He always knew that his life would be short and he knew where he was going when it ended here. He belonged to MIA – Men In Action.
One of the most important parts of Mark’s life was his connection to his internet friends. This was as necessary as food and water to him. It was very common to see Mark wearing his Therapy Vest shaking the snot out of him, smokin’ on his nebulizer pipe and typing on his computer as he chatted to his friends.
Mark received his new lungs on October 17th, 2006, and was looking forward so much to beginning to live the life most people do including employment, marriage and enough air in his body to be comfortable. The things most people take for granted and don’t think twice about. And, he thought he made it. He healed after his transplant and was feeling good. But, it was not to be and shortly after the first of January, 2007, a downhill slide began. Mark left us on July 21st, 2007, after a long, hard struggle. There is a drawer in the top of Mark’s casket where his friends and family could put small mementoes. In the drawer is a picture of his truck, a picture of his dog, a small porcelain lamb that he had given his grandmother, and a small fishing fly lure that a friend made just for him. His brother put a small card in the drawer that gave a Christian definition of his name. The Christian meaning of the name Mark is “Mighty Warrior”. It fits him to a T. No one ever fought harder or with more bravery than our “Chief”. “Mighty Warrior”
By: Barbara West
On Dec. 5, 2007, my son ,Eric Jenkins, passed away in a car accident. He was 23 years old. Eric had not been diagnosed until almost 17. He was an exceptional person, and not just because he was my son. He was an Eagle Scout, had an associate degree in education from LCCC, and had just finished the fall semester at Bloomsburg University with straight A's. He was majoring in Elementary education and would have started student teaching this September. More importantly, he was a kind, generous, and gentle soul who had accepted his disease with maturity and grace. He was 100% compliant with his medication and treatments, and because of this was able to achieve as much as he did in his short life. Perhaps God felt that because he was such a good and kind person, he would spare him the suffering that would come later in his life. It is very difficult to accept that he is gone, especially in this tragic and unfair way, but I know he is in heaven. There is no other place for such a sweet and caring young man with such a wicked sense of humor, a quick smile, and a kind word for everyone. Eric taught me that there is nothing that cannot be achieved with enough perseverance and inner strength. He was always a son to be proud of, and I miss my buddy more than I can bear sometimes. I cannot believe how much it hurts. We were more than mother and son, we were best friends and inseparable partners in the fight against his CF. The world has lost an amazing person, but heaven has gained a special angel. Eric, I will always love you and miss you.
