By Margot | October 30, 2009
Sam’s bladder started bleeding again on Wednesday afternoon. It’s very dark red with lots of clots this time around. We sent him to school yesterday with a huge bottle of water hoping against hope that it would clear up and he could have Halloween. Yesterday afternoon it was looking worse and he said he’d felt woozy all day and he thought he was going to need blood today and would he have to miss his Halloween carnival. We called in to the clinic and they said to bring him in right away and he was at 6.7 hemoglobin last night and bought himself a blood transfusion. Last night he couldn’t go pee at all and when he was finally able there were huge clots coming out. We were on the verge of putting in a catheter at 3 am when I literally pulled several clots out. There was blood all over the place, I had it in my hair. The uroligist came in this morning and was not happy (this putting it mildly) at all the activities Sam’s been up to. Though Neil and I both swear she said three weeks and she said she said six weeks. Doesn’t really matter though. She’s going to try and get him on the OR schedule today to get it cleared up. She nearly bit my head off when I asked if it would be possible at all to get him out for any trick-or-treating and sarcastically remarked “And when would that happen?” She said his bloody clotty urine sample was “impressive.” What is it with doctors and “impressive?” I felt horrible when she left and sat again in a dark room next to a sleeping Sam with tears running down my face. Sam’s favorite holiday is Halloween and he was really excited because we bought tatoo sleeves so it will look like his arms are all tatooed as David Beckham. He asked Neil last night, “Am I ever going to be able to have a normal life and go to school every day?” He also said he’d wished we’d brought him in on Wednesday night so maybe he could have hit Halloween. That was my fault because I thought it might clear up as it had in the past. I should have known better though. Andy and Charlie cannot come and see Sam because of the swine flu outbreak. Agh. This sucks and it is scary for poor Sam.
The title of my last post could have stood for the past week and a half as Sam’s platelets have been dropping by about twenty per day. They seem to be holding a little better this week as not dropping as fast. He had a transfusion on Tuesday and he’s at 50 today. His stem cell rescue at City of No Hope went fine (except for a pessimistic doctor) and aside from transfusions, he’s been great. Doing all normal boy stuff, soccer practice when tanked up on platelets and birthday parties (thus the displeasure from our uroligist). Charlie and Andy are good. Very excited for Halloween. I have some good pics of Charlie flexing his muscles in his spidey suit at his preschool parade. He liked it so much he didn’t want to take it off so when the other kids put on play clothes he just kept his whole suit on. I’m going to try and get to school today and paint Andy’s face like Darth Maul since he can’t wear a mask.
I’m trying to get myself out of my funk before Sam wakes up because it’s going to be an uphill job trying to give him some cheer. I keep reminding myself what the nurse said to me the other day in clinic while Sam was getting platelets. We were reading the new Wimpy Kid book and laughing so hard (Sam nearly cried when they left the mom of the family at the gas station bathroom) and we were playing chess. The nurse said to me, “Aren’t these good times? You guys just seem so happy sttiting here together.” And so, though I have a lump in my throat at the thought of telling Sam that he will be having surgery today and not going to his school carnival I’m going to get over it and somehow, somehow make it up to him. I know I’m feeling sorry for myself and Sam and I do know how lucky we are. For a little ray of sunshine, Sam’s VMA was down to 12 today.
They just came in and said they can take us to the OR in an hour. They will hang some more platelets right before we go in.