You have to remember our first experience with a hematologist and the trauma that we had been through up to this point. We reluctantly entered the hospital. I still have problems with the hematology floor being the same as the cancer. We met Trisha, Megan and Dezarae....Camdyn's amazing team. From the start it was a completely different experience. They were warm, caring and informative. I cried the whole appointment and they did not judge me for it. They did want to run their own tests. They informed us that only two labs in the US run VWD tests and it will take 1 month to get the results. They checked out Camdyn and thought she looked great. And set an appointment to see us in one month.
We were given literature to read, invited to attend a conference and given their cell phone numbers to call. Camy's blood was drawn, tests sent off and we went home. The next month was life as normal as it could be (as we prayed and cried) waiting for next month.
At our next appointment, we were told the tests were inconclusive. The results showed less than 10% VW factor but the lab noted that her blood clotted. They had never seen that before. Our team decided to proceed with her as Type III but we would test later on when she gets older. They will also be doing genetic testing on Caden, Michael and I later on.
Points of note for those who want to know more of the medical details:
* When she was in the hospital, she was given DDAVP and she did not clot- more justification for TYPE III.
* VW is one of the 12 factors found in every one's blood that helps us to clot. Someone with VWD does not clot normally. Type 1- decreased levels of VW but will eventually clot. Very common. Estimated that 1 in 4 people have it. Signs are heavy or long menstrual cycles, bruises easy, gums bled when brushing teeth, etc... Type II- normal levels but does not bind right to form clot. Two subtypes of Type II also exists. Type III- rare and the severest. one in one million. Must receive a recessive gene from both parents. Causes less than 10% VW factor in the blood. Patients will not clot. Must be given an infusion of VW factor (Humate-P). Can live a very normal life if condition is identified and has access to Humate P. Patients can experience internal bleeds or joint bleeds and can cause life-threatening conditions or permanent damage if not treated.