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A time that has changed who I am today: Living with ITP

Leila Cheo-Isaacs

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My diagnosis of ITP has impacted my life in ways that some kids can’t even imagine. You’re probably wondering, “Well, what is ITP?” ITP stands for Idiopathic Thrombocytopenic Purpura. It is a rare blood disease that approximately 3.3 out of 100,000 people get. ITP is an autoimmune disease. A disorder where your immune system works against you. With ITP, your immune system thinks your platelets are an infection, and gets rid of them. There are two types of ITP. Acute ITP resolves itself after about 6 months, almost like you grow out of it. Chronic ITP, which I have, can last for years and even your whole life. I’ve had chronic ITP for almost 10 years.

Backtrack to the year when I was diagnosed. I was only five years old, and in kindergarten. My mom started noticing a bunch of bruises all over my body. At first, my parents weren’t concerned because they thought I was just playing like a normal kindergartener. When the big black and blue marks covered my leg and these little red dots we haven’t seen a day in our lives would not go away, we all got very concerned. We didn’t know what you were supposed to do for a bruise since it would usually just go away after a week or so, my parents began to worry. They thought we should go get it checked out. They took me to the pediatrician where they took blood samples. This was my first time I remember getting blood work, I had no clue what I was getting myself into. I mean, obviously I didn’t want to sign up for any of this, and frankly, I didn’t sign up for this, but looking back, it sure felt that way. That Friday we received an extremely alarming call. The doctor told my parents something about me having to go to the hematologist first thing Monday morning because my platelets, whatever that is, was extremely low.

That Monday morning, I didn’t even go to school, I was taken, by my parents, to the hematologist. Looking back, I can just imagine all the anxiety and stress my parents must have been feeling. Maybe I’m lucky for being so young and not really knowing what was going on, but this would change very soon.

The most anxious moments for my mom were the moments leading up to the doctor finally coming to my was when the doctor said, “Your child has ITP”

My mom’s over here like, “What the? What is that?”

The next day, Tuesday, I had to go in for my first treatment. I was never even told that this would have to happen as frequently as the reality came to be. I had no clue that I was going to have to get a needle in my arm multiple times a month let alone a year. I really did not, and I mean did not want the needle in my arm, not even for blood work, which now, I am perfectly fine with, but I did not want anything to do with those needles. One time, they had to call in like 4 security guards just to hold be down. My parents then started referring to these times as wrestling an alligator. There came a time that I would walk into the lab and all of the nurses wanted to hide and cry in a corner, that’s how bad I was.

I spent most of my elementary school days inside for indoor recess which I hated, especially because sometimes the friend I wanted to bring inside with me wanted to play outside with someone or something, which left me inside all by myself. Most of my friends got to be very active, which was very hard for me to see, as I am a very active person. I never got the chance to do many sports like basketball or soccer, which were common sports that pretty much everyone participated in.

After a while, the treatment I was currently receiving stopped being effective. This left me with a new treatment option resulting in overnight stays at the hospital, which let me tell you, are the worst, did you catch that? I said they were the worst. I had this petrifying needle inside my arm for more than 12 hours. They did have this fun playroom, but I couldn’t move my one arm so that’s always fun, if you didn’t catch that, that was sarcasm. I did sleep most of the time because they gave me a whole lot of benadryl which helped make this all go by a lot faster, which I guess is a good thing. Trust me when I tell you, this is no fun for a fifteen year old, and for sure it is not fun for a five-six year old.

Was it really this bad? Yeah, don’t make me start. One thing, on the contrary, was when I heard I I was able to receive a wish from the Make-A-Wish foundation. . . The thing that caught my attention about Make-A-Wish was seeing a little girl get a wish granted to meet her idol, Bethany Hamilton, the surfer who lost her arm in a shark attack. I told my dad I wanted to get a wish just like hers, and being the curious ten year old I was, my dad and I went online to wish.org and filled out the form. Then, we waited. And, we waited some more. And, a little more time went by. Then, after all that waiting, we got a call. The person on the other side was from Make-A-Wish.

My parents answered the phone, “Hello, I am from Make-A-Wish. I would like to speak with Leila, is Leila there?”

From the other room I heard a yell from one of my parents, “LEILA!”

“WHAT?”

“You have a phone call”

I walked to the phone, not knowing what to expect, was it a friend? Who could it be? Are they sure it’s for me? I never get calls.

“Hello?” I questioned the person.

“Hi! Leila? I’m Barbra from Make-A-Wish. We received your form and would like to meet you to talk about your wish.”

My parents then scheduled a meeting with Barbara and another Representative from Make-A-Wish over the phone. Then, once the day had come, Barbara and Edna rang on our door bell and I ran to the door. I had been looking forward to this moment my whole entire day. I opened the door and they greeted me with a gift. I led them to our dining room table where my mom came in from the kitchen. Once they sat down with me and my parents, they explained to me that I had 3 wishes, kind of like a jeanie. They asked me to come up with 3 wishes so that way if my number one wish was to not happen, I could still get this wonderful opportunity to get a wish granted.

After my parents discussed more with Barbara and Edna about the wish and dates, they sent me a big envelope in the mail. My whole family saw the letter, we were jumping with joy, hurdling with glee. The words and smiles were never ending for that letter, none of us wanted it to stop, looking back on it, it still feels like ten years ago. So many tears of joy were shed.

 

The wish was good in another way; being granted a wish. This has opened my eyes to ways that I can help spread awareness about ITP and blood disorders. For example, the last Friday in September every year is ITP awareness day and what I try to do is post on some kind of social media platform to let all my friend know to wear purple and support it. In fifth grade for this day, I asked to speak with my principal to make a public service announcement which ended up really amazing for me to end up seeing a sea of purple the next day at school. Not only did she let me give a public service announcement, but she and I thought that it would be more thoughtful for the students if it was coming from a fellow student.

My family has also helped me spread awareness by  participating in the Valarie Walk, which is organized by my hematologist to raise funds and awareness for blood disorders and cancers.The wish had such a huge impact on me,  I am now involved in the Make-A-Wish club at our High School and hope to get more involved. As for current treatment, I get weekly blood work and a weekly injection i still don’t enjoy it, but I live with it, and I’m really close with my nurse. Actually with all this experience with getting IVs, I’m now interested in becoming a phlebotomist in my future.

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A time that has changed who I am today: Living with ITP