those of you who are new to following Dyamond’s medical
condition, I wanted to give you some history.
When she was two or three years
old, she would itch her legs until they were raw. She would
get out of bed during the night, while sound asleep, and she
would rub her feet on the carpet until she had blisters. The
doctor felt she had allergies, due to the fact that I have
several allergies and take three shots a week and daily allergy
pills. They tried several different allergy medicines and none
seemed to help. We applied lots of lotion, thinking dry skin
could be causing the itching. Dyamond would always say her
legs didn’t itch, her bones itched.
Dyamond spent her toddler days
at home with David. Her first involvement with children outside
the home was when she started preschool at the age of four.
She attended preschool for 2 ½ hours
a day, twice a week. After she came home each day, she would
take a four-to-five hour nap. Dyamond was always a good sleeper,
and we just thought she required a lot of sleep. David and the
preschool teacher had talked several times about how tired she
was and the teacher suggested to not let her sleep so long. David
did this and also took her to the family doctor. They tested
her for mono more than once and she always tested negative. We
decided to have her tonsils removed before she started kindergarten.
Doctors thought this would help her get a sounder night’s
sleep. There was a complication with the removal of the tonsils
and she had to return to the hospital. When she returned, her
hemoglobin was a 5. Normal hemoglobin is 12-15 and the doctors
don’t like to see levels below 11. They thought she might
be a bleeder, so they ran several tests over the next several
months and her hemoglobin went back up. In kindergarten she didn’t
have the energy the other kids had, and she was still very tired.
We told her doctor that we wanted additional tests run on her
when school got out for the summer. He sent us to a pediatrician
in Ankeny, who sent us to the University of Iowa Hospitals. They
ran several tests on Dyamond and told us that she had a blood
disease called Congenital Hemolytic Anemia. Her red blood cells
die in less than half the time as a normal child's, resulting
in low energy. We wanted to know what could be done for this
condition and they told us we had a bigger problem. Dyamond had
a liver disease and her liver was deteriorating. They performed
a liver biopsy to confirm the diagnosis. They put her on medicine
to slow down the deterioration and several medications to help
control the itching. They told us that Dyamond was correct in
thinking her bones itched, but it was her blood. Bile was not
able to be removed from her blood under normal conditions. They
explained her liver disease as a tree with a trunk, branches
and twigs. She does not have the twigs, which is how the bile
is removed. This was July 1999 and Dyamond was six years old.
Dyamond’s younger sister, Dallas was almost two years old
and we asked to have her tested. They told us there was a 99%
chance that she would not have the same disease. The Friday before
Christmas in 1999, we were told Dallas had the same disease.
When Dyamond heard this she started crying and wanted to know
if she could take the medicine for her sister because it tasted
so bad. Due to their age the medicines had to be made into a
liquid form. Both David and I can confirm that the medicines
indeed do taste terrible. Yes, we both tasted them. They also
did a liver biopsy on Dallas and to this day she still calls
it, “when they pinched my liver.”
Over the next several years, the girls were seen at the University
of Iowa Hospitals every couple months. They performed several
upper endoscopy procedures on Dyamond and only one on Dallas,
so far. This is where they scope her esophagus looking for varices
(large blood vessels that could rupture). Three times they have
had to band off the varices in Dyamond. When the paths from the
liver to the heart get blocked, the blood finds other paths,
and the next favorite path is in the esophagus.They performed
this procedure again on 8/14. There were no varices.
At their December 7, 2005 checkup,
Dr. Bishop told Dyamond it was time for her to be evaluated
by the transplant team at the Nebraska Medical Center in Omaha,
NE. They scheduled her for a three day
evaluation on March 13 th. The evaluation ended up taking five
days. They tested everything. The following is what was conducted
during the five days and I’m sure I missed a few things:
x-ray for bone age, chest x-ray, ultrasound of abdomen, psychology
consult, blood typing, financial consult, child life assessment,
nutrition consult, social service consult, hematology, genetics
testing, echocardiogram, urinalysis, bone scan, another liver
biopsy and a lot of blood work. From these tests they found that
her bone density was a -3.7; normal is 0 to 2.0 and they don’t
like to see it below -2.0. She is now taking a new medicine once
a week that goes directly to her bones. Transplantation causes
low density, and with hers so low already, it is a concern. They
found that her kidneys were functioning at 50%. Due to these
results, we returned in June 2006 for a kidney biopsy. The biopsy
showed kidney disease.
On July 21, 2006 Dyamond was listed on the UNOS (United Network
for Organ Sharing) for a liver and kidney and is awaiting transplant.
Dyamond will be receiving her transplants at the Nebraska Medical
Center in Omaha, NE.
I want to share a little bit about
Dyamond the young lady, so you can get to know her and not
just the sick Dyamond. Dyamond is a very caring and loving
girl. Her passion is dancing, and this is what gets her through
each day. She wants to be a professional dancer when she grows
up. Due to her enlarged spleen, she has not been able to participate
in any physical activity, and has been removed from physical
education class for several years. With this being said, Dyamond
and Dallas have become very involved with dance. They not only
take weekly dance classes at Nicole's
dance studio in Ankeny with the spring recital as the goal, but they are also members
of the dance competition team. It has been a big commitment
and a wonderful opportunity. Their instructors, fellow dancers
and dance parents have been a huge blessing to our family.
For the past few months, dancing has been hard for Dyamond
because her body is not allowing her to do everything that
she used to be able to do. She does not want to give dance
up completely, but she is cutting back on the number of groups
she will be in. As much as she wants to be on that stage with
her teammates, she knows that they all understand why she is
cheering them on from the audience. She knows as hard as it is
for her to be in the audience, it is just as hard on them not
having her on stage.
Dyamond’s teachers shared their thoughts on Dyamond during
a recent meeting. Dyamond is a very hard worker; she has an excellent
work ethic; she is a great role model for peers and adults; she
has a really good outlook on life; she is very determined; she
is an exceptional child; "she is my inspiration." Those
are comments every parent would like to hear, but these are the
qualities everyone sees in her.
I’m Diane her mom, David is her dad, and Dallas is her
younger sister. I’m sure you will be hearing these names
a lot on her carepage. I hope this helps to give you a little
more information on Dyamond. Of course there have been several
bumps in the road, but these are the major ones.
Return to top of page.