My baby boy is sick. He’s on round two of a stomach virus, and it’s triggered his bleeding disorder, which is an autoimmune disorder.

My baby, my first born, is 33.

He first got sick with this when he was seven years old. He came home from school and was covered in bruises, the largest a deep purple, and covering his entire right forearm. I asked him if he’d been kicked by a horse. He just shrugged – he had no idea how he got the bruises.

I was not a nurse or medical at all, so I immediately thought it was leukemia. Instead, I was told he had ITP, and a platelet count of 5,000. It was supposed to be 140,000-300,000.

ITP has many names – idiopathic or autoimmune thrombocytopenia pupura. It’s a low platelet count, and bruising. Platelets are a part of a very complicated system that clots blood. From age 7-10, my son was hospitalized multiple times, often with platelet counts less less than 1,000. It was harrowing to know what could happen if he fell down. Hit his head. Got in a fender bender when I was driving. Etc.

For a couple of years, he was on high dose steroids. It helped keep his platelets up, but it made him gain a lot of weight, and he got cushionoid. He looked like an overweight kid. It was the steroids, but he still got bullied.

At the age of 10, the doctors advised me to consent to a splenectomy for him. They said there was an 80% chance it would cure his ITP. It was a big training hospital, and he had a great doctor. I had an organ removed from my child. It’s a terrible thing to choose.

Within 2 years, his platelet counts began to dive again. They did a CT scan. They thought they saw an accessory spleen – he had 4 accessory spleens when they took his spleen out the first time. They asked to go in laporoscopically and take it out. I let them go into my sons abdomen again.

After a couple of hours the surgeon came to me, crying. They didn’t find anything with the scope, so they had to open him up again. She found nothing. So my son was filleted open for nothing.

The rest of his childhood was intermittent visits to the hospital. His platelet level crawled up into the 20,000 range, with no symptoms. His body was compensating. Short bursts of steroids were given, or gamma globulin, a blood product, when he was hospitalized again. By now, I was a nurse, and was adept and dealing with these acute episodes.

When he graduated from high school, he had platelet counts in the 60-80,000 range. I was happier that they are higher. I also had to turn over the reins of managing his ITP. This was extremely difficult.

Whenever he gets sick now, his body will attack his own platelets. The spleen is the largest organ of the lymph system, and the remaining lymph nodes are working full force.

As an adult, the stress of all the hospitalizations has made him wary to be treated. He eats healthy, and he takes a lot of vitamin C. He tries to stay well. He works with the public, though, and is exposed to viruses.

So here we are. He has a virus. He lives an hour away. He is symptomatic. He doesn’t want to go to the hospital – he doesn’t have insurance. I give him advice on the stomach virus. On fluids. On disinfection. I make him promise me he will go to the hospital if he has a bleed, or a headache. He gives me his word. My parent live within five minutes of his house. They are at the ready. He says he will call them if anything happens in the night.

I HATE THIS!!!!

He’s always my firstborn, my baby boy. I feel so helpless. Just like I have for the past 26 years.

I pray he gets better and doesn’t get hospitalized. I also pray they will find a cure for this obscure disease which strikes my child intermittently with acute, frightening flare ups.

May tomorrow bring better news.