Poor Will, he asks this question every time we go to the doctor now. By shot, he means blood draws. A shot would be much less traumatic!
The info that I am about to list is more for my knowledge and everyone may want to skip over. I need all of this documented so that I can always remember what was happening as we move along through this process.
At the end of December, Will had lab work to check his hemoglobin and hematocrit to make sure that he isn't anemic from blood loss. He has urethral bleeding so we often see blood in his underwear and he has had rectal bleeding at times. The doctor went ahead and did a full lab work up on him just to have some baseline info. This showed that he was not anemic, but his D-dimer was high along with C-Reactive Protein. The D-dimer means that he is at a higher propensity to clot, and it may also be elevated in the presence of a clot. C-Reactive Protein is a marker of inflammation. When Dr. Snyder and I discussed these labs, we thought these might be high because Will may have had an active clot going on - we had thought this was happening in his scrotum or rectal area since he was in such severe pain over Christmas. With a high D-dimer, Will was going to have to use Lovenox injections (blood thinner) before and after sclerotherapy procedures.
At the beginning of January, Will and I went back to Dr. Snyder's office for Lovenox injection training. I give shots almost daily at work, but the thought of giving it to my child makes me panic! These would have to be done every day for 7 days before procedure and 7 days after procedure. Dr. Snyder wasn't really sure she wanted to do this since he bleeds a little anyway, so we decided to do the lab work again. The D-dimer this time was still elevated but improved. We decided not to do the shots for this first round of sclerotherapy since he was getting closer to normal and risk of bleeding vs. benefit couldn't really be justified. Yay for me (and Will)!
With that round of lab work, Dr. Snyder noticed that his aPTT has been elevated at all of the lab draws so far. This led to further investigation. Her explanation was that he clots slowly in the test tube and she needs to know if he actually does that in the body. Back to the lab for us and this time they and to stick him 2 times because they had trouble getting his blood. He wasn't happy, but he left with 4 band-aids, and even Whiskers got 1! They mixed his blood with some "normal" blood and re-ran the test. The results that time were normal so this told us that Will has an issue with a clotting factor. But they didn't have enough blood to run the tests to find out which clotting factor.
Back to the office for more blood work - this time he actually refused to go. I bribed him with everything that I could think of and finally after lots of "no's" and tears (from both of us), I finally convinced him with a Disney app that he has wanted on the iPad. The results were that he is deficient in Factor XI. If you want to be deficient in a factor, this one is a good choice - easily fixed during procedures with some plasma if needed.
The nurses in the lab know him now. They do an amazing job! They are so kind and so comforting. Will's favorite person is Katie. She is a Child Life Specialist in the Cancer Center and she certainly has a gift! (Dr. Snyder is an oncologist, so that is why we go to the Cancer Center - no concerns for Will on that part!) She tags along with us and she and Will play games on her iPad. He screams and cries when the needle sticks, but then he just cries while playing whatever game they are doing. And the tears are dried up by the time he is picking out his band-aid colors. He is such a trooper!
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