ANTHONY'S ITP JOURNEY

The story of a little ITP Warrior as told by his Mom

 

 I first noticed something wrong with my son on July 14, 2015 when he was just a year-and-a-half old. He fell against the side of my bed, not even hard enough to make him cry. As the day went on I noticed it was turning a dark purple and got a large knot under it, so I took him to the doctor that day. The doctor said to watch it and the rest of his body - that she thought it might be something.

Over the next two days he was covered in bruises, both large and small, and little clusters of dots that I now know is petechiae. Without hesitation, I took him to the doctor again on July 16th and she immediately sent us to UK Children's Hospital where we were told his platelet count was 10,000 and dropping. It was at this time that Anthony was diagnosed with a rare bleeding disorder called immune thrombocytopenia (ITP).

They wanted to start treatment with IVIg. It took 5 people and 5 hours to find a spot to insert the IV for treatment because his veins kept popping and I remember gently sliding my thumb across his forehead which left a trail of petechiae. We cried together.

 

Several days later when they said Anthony could go home (his platelet count was still not above 40,000), the nurse pulled out his IV and put a bandage on it. We thought it was all over and left the floor to go home. During the elevator ride down to the lobby, my husband started screaming, “Oh my God, he is bleeding!” I looked down and there was a huge puddle of blood on the floor and my pant legs were covered in blood. We rushed back up to the floor and called for help. The same nurse was confused as to why he was bleeding like that. Another nurse told her that a bandage wasn’t enough to prevent bleeding and when they were done wrapping the IV site, he had an actual boot made of bandages and tape. Seeing my pants completely covered in blood from my waist down, left me feeling furious and scared and those pants still have light stains in spots today from all the blood Anthony lost that day.

Anthony continued to have blood tests 3-4 times a week for several months and those first few weeks were terrifying for him and me. Even some nurses and medical staff asked, “What is ITP?” I knew then that ITP truly was a “rare” bleeding disorder and that there was a need for more research and public awareness.

In September of 2015, Anthony was admitted to the hospital for more tests and treatment and continues to endure blood tests on a regular basis. Because he has not had a normal platelet count in over a year, his ITP is now considered chronic. As a result of numerous needle sticks, when he sees a nurse, doctor, or anyone else in scrubs he quickly begs in his little voice, “Please don't hurt me, please!”

As a parent, hearing those words hurt and broke my heart and knowing there is no cure leaves me feeling helpless. Organizing this event has empowered me to take control over what I can - to raise public awareness for my son and every other child or person fighting ITP.