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Living With a
Blood Disorder by Comille Begnaud
Hello
my name is Comille but my friends call me Neil. I am 12 will be 13 on the
30th of August. I was born with this disorder called SICKLE BETA ZERO
THALASSEMIA. This is a form of SICKLE CELL DISEASE. I don’t like this
disease because I have a lot of pain all the time. I have a lot of
medications I have to take all the time just to try and keep me healthy.
I get scared sometimes because I know how serious my disease is but there
are times when I am on top of the world because I have such great doctors
and nurses and friends but most of all a mom who always makes things
better for me when I hurt. See, my blood gets stuck in the veins and clog
the joints because instead of my blood cells being normally circled they
are shaped like bananas.
On some days I make a lot of the bad cells and they
send me into what is called a crisis. If the crisis is too bad I have to
go into the hospital and get antibiotics and fluids and stronger pain
medications to try and make it all better. I cry when I am in pain. My mom
is always so positive. She always tells me everything is going to be
alright and don’t worry, she is here for me. This makes me feel
better. Sickle cell is very painful for some of us and yet others may not
have as many crises. Some of us spend a lot of time in the hospital and
others not even a day. Some live longer than others and some have already
passed on to another life.
I don’t like this disease because it stops me from
playing sports. The good thing is I can do music and this disease can’t
stand in my way. I can become president if I want to and sickle cell could
not stop that. Patients with this disease or any disease should always
listen to the advice of their doctors because they only want to help. We
need plenty of fluids and rest. We cannot get over worked because it can
cause problems. We have to be careful of the cold because it can cause
pain. Some have problems with their hips and others have problems with
major organs. All of us are at risk but if we take care of ourselves we
can survive this thing. I want a cure and will one day open my own clinic
or center for kids with this disease.
The good thing about this disease is we get to go to
special camps like Dreamstreet. The people of this camp really love us and
that makes us feel really great. Kids with this disease can get a lot of
infections and things that are not good, so for a lot of our life we take
antibiotics. We have to take a lot of tests to see if our heart is beating
right or if our lungs are breathing right. We can get strokes so we have
to take TCD’s which are transcranial Doppler tests. They tell the doctors
if we have blockages in our brains.
Some of us are on blood transfusions because it helps
you feel better but the bad thing is your iron level goes up really high
and so we have to take this medication call desferal to bring the ferritin
level down. I use to get transfusions but not anymore because I started
getting antibodies, so they stopped my treatment. Now I am on this
medication called Hydrea. It’s a drug used for cancer patients but they
give it to sickle cell patients who have a lot of pain crises and I get to
take this and it really helps me. It doesn’t take away the pain, I just
have less. Well take care of yourself fellow hospitalteers. If you ever
want to chat feel free the contact me.
I love you all, COMILLE
Comille "Neil" Holland - Begnaud
"Just A Word From A
Patient"
Hello
friends and family most of you know me as Comille but you can call me
Neil. I am an 11 year old boy but will soon be 12 in august. I am in
6th grade and will be going to the 7th.
I am a rapper and actor something I enjoy very much and intend to make
this my life long career. I am working on my first solo album now and it
will be out in 2001. This album will also feature my friend Akeemia
Ramsey who had enough guts to do a rap with me called are you my friend
and my producer Mick Washington. I also have a cable show to do with
my producer Mick. We will be a special guest so I will keep you informed.
I am also a patient at Long Beach Memorial's Miller children's Hospital,
and the reason for that is I was born with a blood disorder called Sickle
Beta Zero Thallasemia, which is a form of sickle cell disease. If
you just look at me you would not be able to tell unless you actually see
me go into what is called crisis.
A crisis is what us sicklers go through when our blood decides it wants to
stick together. It is very painful and can strike anywhere in the
body so we have to take a lot of what my mom calls precautions which means
we have to be very careful of a lot of things. I have a lot of
crisis but I don't let them stand in the way of living. I have great
doctors and they only do what's best for me and I love them for that and I
trust them very much like I trust my mother.
Dr. Groncy is the head of hematology and the word hematology means h having
to do with the blood. Dr. Groncy has pretty eyes and guess what they
are not the same color which makes her special. At one time Dr.
Groncy put me on blood transfusions and they really made me feel so much
better.
I didn't have so many crisis and when I did have them they were not
that very painful and not long but the best thing of all is I didn't have
to go into the hospital. But what happen with the transfusions is
she had to take me off because my body started making what is called
antibodies and they would start to reject the blood if she continued to
give it to me.
Now I have been off transfusions for over a year now and guess what I
started getting sick again because I started making sickle blood again.
So now Dr. Groncy has put me on a new medication that they normally
give to patients with cancer and adults with sickle cell disease and its
called Hydroxyurea. I was scared at first because I looked this medication
up on my computer and read about it but I still didn't understand. But
when I went to Dr. Groncy's office she didn't even talk to my mom about it
she talked to me about it and that made me happy because she let me make
the final decision whether or not to try this drug. I know she
wouldn't do anything to hurt me so I decided to take the medication.
Now once a week I have to get my blood tested and every 4 weeks I
have to see Dr. Groncy and increase my meds. until she is happy with my
progress. It will take about 6 months to a year before everything is where
she wants it to be.
I was having side affects the first few days but now they are gone. My
biggest dream is to one day be able to have a bone marrow transplant like
some of my friends, but until that day comes Dr. Groncy knows what's best.
I am also thankful for friends like Dr. Teddy Softley Ph.D. who has always
been there for me not only as my psychologist but as my friend. She
taught me how to relax and deal with my pain so that I don't have to take
so many drugs and now I don't cry as much unless it is too bad, and Joetta
who has a lot of initials behind her name but she should be a doctor now
because she is just like a doctor I think it's called a nurse
practitioner.
Joetta never hides anything from me when it comes to my health and she
always makes sure I understand what I am dealing with. My nutritionist
Shahin who always has time to give me a lesson on the importance of
drinking my ensure plus strawberry flavor. She makes sure I grow and
eat properly, also Dr. Finklestein who makes sure my mom gives
me a hug everyday and she has not stopped yet, and Dr. Patel who always
seems to find time to tell me a joke or look for Mickey Mouse in my ears.
There
is a new Doctor his name is Dr. Roberts. I only met him a couple of
times in the hospital and he is very nice too and I know we will be
friends too. Sylvia Ramirez I miss you at Jonathan Jaques but I am
glad you are still in the hospital buddy. I love all the nurses who
have taken care of me in the past, the present and who will take care of
me in the future.
I am very thankful for my best friend who is also my mom. I can't
begin to say how much I love her. She is the greatest person I know.
She never gives up on me and always has a kind word to say no matter
how bad I may feel or how sick I get she never leaves me. She makes
sure I have everything I need even if she has to do without something she
might want.
Momma I just want to say I love you and I have a special surprise for you
but you have to wait for the album.
WHO AM I?
Written by: Comille Begnaud
June 6th 2000
Sickle Beta Thallasemia Zero
My name is Comille and I am in 5TH
grade.
When I was born I was diagnosed with
a blood disorder called Sickle Beta Thallasemia Zero it is a form of
Sickle Cell Disease. It can be very painful and I have to go in the
hospital a lot because of pain or sometimes fever. And I get a lot of
medications to make me feel better.
I sometimes get a lot of infections
and they make me feel yucky. I had to have surgery to get a portacath put
in my chest. A portacath is something they put in you so you don't have to
keep getting stuck with needles. I got stuck so much my veins were not too
good anymore. They also use the port to put blood into my body and to give
me blood test.
I now come home to finish my desferal.
That is the medicine they give me for iron overload. The reason I use to
get blood every 3 weeks is I had a small stroke in August and my doctors
said it would help me not to have another one. I like my doctors because
they fought to keep me alive they never gave up on me. I get to do a lot
of neat things too. I go many places and this year I am now working on my
very own music CD. I am a rapper and I want the world to know just because
I have this horrible disease does not mean I have to let it beat me. I go
to a school for the performing arts and I have also performed in many
shows as well as performing for my doctors. My first performance was at
Long Beach Memorial Hospital at a function they were having one February.
Dr. Finklestein put me on a chair and allowed me to do my song that I
wrote about my disease and my doctors and I have been performing ever
since. I have even done a Peter Pan commercial and I attend acting
classes. I will be on TV in September 2000.
I hate having this disease it keeps
me from playing like other kids and I had to grow up faster and stay in
the hospital a lot. But now that I have this port I wont have to stay in
and I wont miss as much school. I no longer get blood transfusions because
my doctors could not match my blood anymore. I started making my own
antibodies and so now I have to be extra careful not to get sick. I am
getting ready to go to camp in June and I hope I don't get sick and have
to go in the hospital before June 18th because that will be a year I have
not been in the hospital. I have a lot of pain but Dr. Teddi Softley has
taught me how to deal with it more.
You cant catch Sickle Cell by being
my friend You get Sickle from your parents. Each parent has to have the
trait. In my case 1 parent had the trait for Sickle Cell and the other
parent had the trait for Beta Thallasemia Zero so this gave me Sickle Beta
Thallasemia Zero.
My blood doesn't form like normal
blood it comes out looking like a banana or a sickle they use to cut sugar
cane down with. That's where the name sickle comes from.
When I don't get enough oxygen in my
blood I have a crisis and it hurts bad. Sickle Cell is not just in black
people it is in all colors of people.
There are 3 common types of Sickle
Cell Disease:
1) SS (Sickle Cell Anemia)
2)SC (Sickle Cell Disease)
3)SBT (Sickle Beta Thallasemia)
They all cause pain and problems but
some are worst than others. Some of the problems with this disease is:
1)pain
2)strokes
3)more infections
4)leg ulcers
5)bone damage
6)yellow eyes (jaundice)
7)gallstones
8)lung blockage
9)kidney damage (loss of body water)
10)painful erections in men
11)blood blockage in the spleen or liver
12)eye damage
13)low red blood counts (anemia)
14)delayed growth
Sickle Cell patients should be under
the care of a doctor who works in blood disorders. They should take there
medication everyday. Parents have to check for fevers and make sure the
kids drink lots of water and not to get too hot or too cold.
We have to avoid exertion and stress
get plenty of rest and go to the doctor a lot. I always have to watch for
fevers, chest pain, shortness of breath, too tired, stomach swelling, and
bad headaches, weakness or loss of feelings, pain that will not go away at
home vision change. Some kids are now able to have a bone marrow
transplant. They are very lucky. 4 of my friends from my hospital have had
the transplant and are cured but they have to be careful having children
because there kids can still get the disease. If I am ever cured I will
adopt kids. I hope I could have a transplant but they are not doing my
type of sickle cell so I just have to hold on and be strong for my mom. My
mom is a strong woman she helps me with everything and never gave up on
me. She is determined to get me a cure she said. She is my best friend and
I am her best friend.
Soon they will find a cure and I will
be healed. And I will have the biggest party in the world. I will have all
my doctors there just like when they honored me I will honor them. I was
the first blood disorder patient ever to be honored that was great. My
motto it please don't treat me different just because my blood is
different because that is prejudice just like racism. We are all the same
and all I want it a chance to be a kid sometimes. I am glad I get to go to
camp dream street because it's really where a kid can be a kid.
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