The first Hematologist

At this point, we were still in a state of disbelief, confusion and overwhelming fear. The first hematology appointment was a nightmare. The hematologist we had been sent to was cold, blunt and mean. He also happens to not be very good at what he does....wait for the rest of the story.

He basically told us that she needed more tests done and that he would have the results the next Monday (week later.) He wanted her to continue taking Amicar (which gave her horrible diarrhea that was causing weight loss). Not knowing any better, we followed his directions. Later that week, sooner than he said, we got a call from him. We were told that she had a virus that caused an inhibitor in her blood and that she would heal fully and we should never experience any other problems. How ignorance is bliss! We were ecstatic! There was nothing wrong with our baby and we went on with life. I was going to California the next week so I kept with those plans.

The following week was the worst and most trying week of my life. Two days later, the hematologist calls back and says, "I think the test was wrong. I think she has a severe problem and you need to bring her in right away." He had sent her blood to two labs and gave us the initial results without waiting to get back all of the tests. We were told that Camdyn had less than 10% Von Willebrand levels and that the lab noted TYPE III. He said that he would have to put in a port to give her meds everyday and just see how things went along. He also wanted to run more blood work. I refused. I cried. I told them I wanted a second opinion. We left.
We began researching other pediatric hematologist and Von Willebrand's.

My research terrified me. The stories that I could find of Type III were horrible. I cried most days, all day long. We did not know what to do or how to fix this. A few days later, Michael had an appendicitis. He was rushed into emergency surgery. Within a week's time, I was told my daughter had a rare and severe bleeding disorder and that my husband could die if they did not get him immediately into surgery.

Thankfully, Michael had a full recovery. When he returned to work, we received such loving outreach and support. Michael works for an amazing company. On his first day back, his company called the president of our insurance company and told him about Camdyn's condition. We received a call that afternoon that we could use the company jet and go to any hospital in the country. The insurance company would cover all medical costs and we were assigned to a special case worker. By the next day, we were given options to go to the Mayo Clinic or to try out the Bleeding Disorder Clinic at Santa Rosa Hospital in San Antonio. The case worker was actually surprised and impressed with the work that was being done right in our city. We got an appointment for the next week.