ITP Personal Stories

Kid's Stories

Having a Life with ITP

I am a single mom of two wonderful teenagers. When my 12 year old daughter was a baby I knew in my heart that something was not right. By the time she was two my instincts and my masters degree in Early Childhood Education were telling me to take her to the doctor. I explained that she slept soooo much and bruised sooooo easily. I was told she was active and slept because she played hard.
Before she was three I again went to another doc and another and said that something was not right, her teeth were not growing right, the bruising, the lethargy, slow hair growth, picky eating and lots of illnesses. Once again I heard she was tired and bruised because she was active, I should take her to a dentist, her hair would grow and she was sick because I was around 200 children everyday and brought home germs and think how healthy she would be by the time she was 5 and in kindergarten.

So we went to the dentist and underwent oral surgery at a Children's Hospital at 3 years old. My daughter lost most of her hair-from the anesthetics (that's what I was told it was from). Then she was so sick they did blood work and told me she had leukemia, then a second test revealed it was just Mono and we were sent home.

This saga continued for two more years. During this time I lost my insurance as well. There started to be broken bones and bloody noses and bruises and sleeping for hours on end and mood swings and no appetite and rashes and Naturopaths and doctors and dentists and bills and the same old story....and finally when an ER doctor was questioning bruises on my daughters feet, forehead and broken arm and heard my exasperating trail, he decided to send us to Children's Hospital where within 4 hours we were told my daughter had ITP.

Many of you have been here and know the emotions and know the odd feeling when the doctors tell you it could be worse-you are lucky, count your blessings, but then tells you that your baby is one of the "incurable types" and not much is known about ITP and you just have to roll with it and it isn't proven that the symptoms I described were or weren't related.

So continued our many visits to Children's Hospital, the ER, doctor, dentist but with a diagnosis now and making sure we knew her count before we did anything. When my daughter reached 10years old I began to worry about hemorrhaging even more then before as I heard of many girls beginning their cycles and not being able to stop the bleeding. I was worried about her body always under 15,000 and we decided to have a splenectomy. Still without insurance as no one would insure us with this blood disease, our time in the hospital was even longer then usual and bills were mounting to over 40,000, but I felt it needed to be done. Sadly, we were not one of the one's whose count went up right after surgery and my daughter was in horrible pain for over a week.

We finally went home to continue to try to be normal with ITP and now with the worries of not having a spleen. I found I could have my daughter on a Section 504 plan at school-this is a law that the school has to work with my daughter (or yours) and finally they would stop saying she was lazy or singling her out and making the whole class run extra laps because she was soooo slow. I laughed out loud when the counselor said to me that they couldn't let her lie down-they weren't set up for that-(they have a nurses office with cots)-finally some satisfaction to be able to say "yes they could and yes they would have to".

My daughter has an incredible spirit, she shines even in her darkest hours. She amazes me in how she just wants to be like everyone else event though most days she goes to sleep after school and spends time at Children's hospital and had to give up soccer and wears jeans because she doesn't want anyone to make fun of her bruises if she wears shorts and she likes to cover up her petechiae because her friends tease her that she has hickies and the same teasing friends like to push their fingers into her arm to see her bruise instantly and the list goes on and yet so does she. She cut all of beautiful hair that took so long to grow and donated it to Locks of Love-because she felt one of the "sicker" children she met at the hospital should have a wig and she rates the nurses and their moods according to the way they test her blood count and she tries to eat healthy to stay healthy when her friends are having junk fests, she doesn't like the bruises or the dark circles or the mood swings or the tiredness, but she doesn't complain, she just smiles and shows me such strength, courage and integrity as she say's "It's ok mom, it's just my ol' friend ITP acting up again"......

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