Thursdays are not fun. Today was doctors appointment and dressing change, for his central line. The covering for his central line is super sticky. The bio derm patch over the wound likes to stick, too. I can’t tell how much it hurts, but removing the dressing and cleaning the site is not fun. Afterward, we are both very tired.
Today’s blood draw was not good. On Sunday, Gregory’s platelets were at 136, post platelet transfusion. Today, they are at 35. Huge dive. His HCT and red blood count are also declining. Tonight we start low dose, oral chemo. When those words came out of the doctors mouth, I immediately got sick to my stomach. I’ve been nauseous ever since. Knowing that it is coming and having it actually happen, are two different things. I just thought that we might have a few more weeks left. Not the case. He is taking mercaptopurine. Also referred to as 6-MP. It is a purine antagonist. It slows the growth of rapidly growing cells. Which includes hair and nails. He may or may not lose his hair, at this point. It is a low dose, simply maintenance, for now.
Tonight all the OffSpring and I are going to check out the Candlelighter’s support group. They meet the third Thursday of every month, at Children’s Hospital. I’d like to get the sibs hooked up with some peers. Kids that are going through the same thing they are.
In order to get Gregory through the dressing change, I bribed him with bubbles. When we stopped by to turn in our membership for Candlelighter’s, he was able to pick out two toys. A pink, plastic slinky, which he LOVES and a tube of bubbles. He was pretty happy to get out on the deck and blow some bubbles.
More later. Gotta jet.