Cheyenne Marie
Cooper was born on September 9, 1991 at 10:54 PM. She weighted 6 pounds, 131/2
ounces and was 20 inches long. Cheyenne had big blue eyes and a head of dark
brown hair. She appeared normal from newborn. During her first night of life
Cheyenne had problems keeping her formula down, throwing up every time the
nurses attempted to feed her. Finally, they changed her formula and this seemed
to do the trick. We were sent home 2 days later, and our new life together
began.
From the first
few days we were home I knew that something wasn't quite right with my baby. It
was a gut feeling that never seemed to go away. But I was a young, single,
first time mother who knew very little about babies. Cheyenne would go through
these cycles where she would throw up ( projectile vomiting) every bottle given
her for 2-3 days, and then would keep everything down for the next 3-4 days,
and again throw feeding up for 2-3 days. Cheyenne was at the doctor's office at
least 2-3 times a month for the first 3 months of her life. They would tell me
she had reflux. They would say hold her this way, burp her that way. I tried
everything. When Cheyenne was 4 months old we moved in with my parents. My
parents and sisters became very involved in helping me take care of Cheyenne.
The doctor's didn't seem to listen to my concern, even though my mom attended
every appointment. Cheyenne was in the doctor's office 16 times during her
first year of life. I think they they thought we were crazy!
During her first year
of life Cheyenne grew very slowly. She only gained 10 1/2 pounds in that first
year. Cheyenne would lay on the couch all day long. She had no desire to get up
and play. Cheyenne's first words came at 9 months of age. She did not say "mom"
or "mama", she said "drink" and "water". It wasn't until later we realized she
spoke those words out of necessity. When Cheyenne was 14 months old she fell
off a coffee table on Thanksgiving and fractured her collar bone in 2 places.
The fall probably wouldn't have had the same effect if she had been healthy and
not suffering from a Vitamin D deficiency.
Finally, when Cheyenne
was 15 months old, it was bad enough for her doctor to be worried. She had not
grown in the past few months, she started losing weight, and was below the 5th
percentile for both height and weight. Cheyenne was not yet walking, hardly
even trying, and had just a couple of teeth. She was diagnosed with "failure to
thrive, borderline developmental delays, and rickets". Unfortunately, for the
first time my mom was unable to attend an appointment with me. I was told to
take Cheyenne over to the hospital where several blood and urine tests were
ordered. I was terrified. They said we'd know more in a couple of weeks. A week
later the doctor phoned me at home, which scares you because you know it's
serious when the doctor himself in calling. He told us that Cheyenne might have
diabetes or this rare disease called cystinosis. Further testing would need to
be done. Cheyenne had more blood drawn, x-rays of her wrists done, was sent to
an Ophthalmologist, and had her bone marrow tested in Omaha, which is a 2 1/2
hour drive from home. In January 1993, it was confirmed that Cheyenne had
Infantile Cystinosis and our lives changed forever. They say hind sight is
20/20. We now understood so many things. The throwing up, the urine soaked
diapers, taking so long to learn to walk, the easily fractured collar bone. We
were't happy with the answer, but at least we fnally had an
answer.
Cheyenne began
seeing a Nephrologist and an Endrocrinologist, and started taking the many
drugs we all know so well. Neutra-phos, Polycitra, Ferrous Sulfate, Vitamin D,
Cysteamine, which became Cystagon, to name a few. Cheyenne didn't like taking
her meds very well. Her grandmother and I would have to hold her down and
squirt it down her throat in the beginning. When she started on the Cystagon
she had to learn to swallow pills, which became easy over time, and we were
able to change at least half of her liquid meds to pills. It was still a battle
to get her to take everything. How we made it through, I'll never know. Our
lives were controlled by medication, doctors appointments and trying to keep
Cheyenne as healthy as possible. That's what our lives were about for the next
several years.
In 1994
and 1995 Cheyenne participated in a drug study of Indomethacin. The study
required us to travel to San Diego and the UCSD medical center 3 times. With my
parents help we were able to do this. At the end of the study we found out that
Cheyenne had been on a placebo. Nonetheless, it was a great experience. We got
to meet people like Dr. Scneider and others who are directly involved in the
research of Cystinosis. Cheyenne also got to experience many exciting things.
On our first trip we flew in a plane, which was the first time for Cheyenne, my
mom and myself. For the second trip we drove. My parents, my sister and my
niece all come and we stopped at the Grand Canyon. We also visited the San
Diego Zoo and Sea World after the doctors were done with Cheyenne. On the third
trip my entire family came along and we took Amtrak train, which was an
experience all it's own. When we were with the hospital we rented a car and
drove to Disneyland for a day.
During the summer of
1999 Cheyenne began growth hormone shots. As most kids with cystinosis, she did
not grow very well. Cheyenne's step dad and I weren't real thrilled with
learning to give shots, but we were willing to do anything for her. For the
most part Cheyenne has been lucky. She didn't really have many problems until
she was 8 years old. We were aware in 1999 that Chey's kidney's were failing.
Towards the end of the year we had even started the whole pre transplant
process. Meeting with the transplant coordinator and trying to learn all we
could about it. In December Cheyenne was hospitalized for 8 days with
influenza. It was the first time she had ever been in a hospital because of a
problem. It was very scary, there were times when she was so weak she would
fall asleep while eating or talking on the phone. Eventually, she needed a
blood transfusion, which can cause difficulties for a future transplant. Since
Cheyenne is AB+, she can take any blood, but they wanted to be as careful as
possible. They made sure she got AB+ blood that was CMV- to hopefully ensure no
problems when it came time to transplant. She was put on Procrit, another shot
we have to give her, to help ready her for transplant. She got out of the
hospital just before Christmas and it was our intention to slowly get things in
order and plan for a transplant.
In January 2000,
Cheyenne was seen by her doctors in Omaha. We also did blood draws for possible
kidney donors that day. Four of us were tested, Chey's grandmother, her aunt,
her stepdad and myself. All four of us came back suitable donors for Chey.
Until that moment, her stepdad Rob had felt like there was nothing he could do
to help his daughter because he wasn't her biological father. Rob was thrilled
to be a match and wanted to be her donor. Over the next couple of months Rob
had a physical and various other tests performed to make sure his kidney's were
healthy and to determine which kidney they would take. We knew Chey's kidneys
were deteriorating, but we still thought we'd have more time. On the morning of
April 6, 2000 after our most recent visit to Omaha, I received a call for the
Nephrologist's nurse saying that Cheyenne's kidneys were almost in complete
failure and she would need to be in Omaha as soon as possible. I called my
husband home from work, had Cheyenne picked up at school, got myself, my
husband, Cheyenne and my other 2 children packed and ready. My mother and
father have always helped me with Cheyenne and have been very closely involved
in her health issues, so of course they made the trip with us, along with
sister and niece. The next morning Cheyenne was taken to surgery to have a
catheter inserted and started dialysis the same day. She was in the hospital
for 5 days and had another blood transfusion before being released to go home.
The kidney transplant was scheduled for April 26, 2000. We thought it would be
smooth sailing until
then.
Cheyenne needed to
be in Omaha 3 days a week for 3 hours of dialysis on Mondays, Wednesday's and
Friday's. My mom would go with us on Monday and Wednesday and Rob took Friday's
off to make the trip with us. On our second trip back for dialysis the day went
as usual until we left the hospital and stopped for supper. Cheyenne stated she
didn't feel too well and wasn't very hungry. She actually went and threw up in
the restaurant bathroom. Once again I had a gut feeling something wasn't right,
but we were tired and just wanted to get home. You have to realize that we were
not taking only Cheyenne on these 2 1/2 hour trips, we also had a 3 yr old
little boy and a 1 1/2 year old little girl. Cheyenne still wasn't feeling well
when we got home so I gave her some Tylenol and sent her straight to bed.
Dialysis was still too new to me, I know this was a sign of a problem. When I
got Cheyenne up the next morning to take her meds she was burning up. We took
her temperature and found it to be 105.6 degrees. I panicked, called and left
messages in Omaha and here with her local doctor. I had given her the last dose
of aspirin the night before and was ready to go get more when the phone range.
It was a nurse from Omaha telling me to take her straight to the emergency
room. Within a half an hour her temp went up to 107.1 degrees, she was talking
to people who weren't there and didn't recognize her stepfather or me. In the
ER they stripped her down, dripped her warm water over her body and fanned her
with a wet wash cloth.
Cheyenne was admitted
to our local hospital and stayed there for 3 days. They ran several tests on
her, including doing a spinal tap for meningitis. On the 3rd day, she was
transferred, by ambulance, to the hospital in Omaha where she remained for
another 4 days. It turned out her dialysis line had become infected with a
staph infection and once again Chey needed a blood transfusion. They had to
insert another line through her arm where I had learned to administer an
antibiotic for the next 14 days. Because of the infection the doctors decided
to postpone her transplant until May 31, 2000. It wasn't a major set back, but
it sure felt like it at the time. In all, we traveled back and forth to Omaha 3
times per week for dialysis for 6 weeks. I still don't know how we did it. I
learned, as I am sure many other parents have, that you do what you need to do
at the time. Whatever it takes to get your child through. I know that part of
the reason we were able to do it was because of help from my family and my
husband's family. Your family's support is everything.
Cheyenne had her
transplant as scheduled on May 31, 2000. Cheyenne spent 5 days in the hospital,
as did her stepdad. It took Rob longer than we expected to get back to work
because one of his rib's were fractured during his kidney removal. It took a
couple of months before I felt comfortable with all the new medications Chey
needed to take. She is still on Cystagon and Synthroid, all the rest of her
meds have to do with the transplant. Cheyenne is not, and never has been on the
eye drops. She really doesn't have photophobia, but her eyes often water. Our
life is stilled controlled by medications, but Cheyenne is so much healthier.
In a way, I'm glad she had the kidney failure this early on. She reaps the
benefits from it. She has grown nearly 4 inches since the tranpslant. She has
so much energy and runs and plays like a normal child her age. Cheyenne has had
no signs of rejection. We feel really lucky that things have worked out so well
for her. We pray to God every day that we remain as lucky for the rest of
Chey's life.
Cheyenne
has had some difficulty with school. We're not sure if it's because she missed
so much of second grade, having the flu and then being out of school while she
was on dialysis, or if it's because of the cystinosis. The school plans to test
her, but since they know so little about cystinosis they look to me for
information. We hope to attend the national conference in Las Vegas in July. We
hope to have her tested by Dr. Trauner. Cheyenne does well in math and
spelling. Reading fluently was a struggle, but finally came to her earlier this
year. Cheyenne has trouble understanding verbal direction and the rules of
language. Her teacher says that one day Chey will understand everything they
work on. The next day she struggles with the very same information.
Cheyenne is extremely
knock kneed. She will be having surgery on her legs the week we get back from
Las Vegas. She was almost to the point of needing a wheelchair before the
transplant. Her Orthopedic surgeon will staple together the growth plates on
the insides of her knees so that only the outside can grow. Eventually, her
legs will grow straight and the staples will be removed. We hope this is the
last major thing Chey will have to go through for a very long time.
Cystinosis is a very
rare disease and not many people know about it. In our own small way we have
tried to make people more aware. During Cheyenne's transplant we had a reporter
and photographer from our local newspaper follow us. Several articles were
printed about Cheyenne and Rob, and in every one cystinosis was mentioned.
Cheyenne and Rob were again in the news when she received a brand new camper
from the MAKE-A-WISH Foundation. Our family was also featured in a story in
Women's World Magazine, where cystinosis is again mentioned. Most recently
Cheyenne was in two commercials and a print ad for Nebraska Health Systems. She
did not have a speaking part, but if she did we would have found a way to get
cystinosis in there.