Doing well. We’re on day -8. Clinical Assistant came into the room at 8:00 am to get Andy’s weight (16.9 kg) and vital signs. Andy went back to sleep. We’re signed up with Father Robert to receive communion, so at around 9:00 am a Chaplain came into the room, we held hands, she said a prayer and gave me communion. I have to say that the prayer and communion is a very encouraging way to start the day. In the meantime Andy was still sleeping. Dr. Haining and the Fellows came into the room at about 9:30. The CMV antigen negative (not found)and the CMV PCR also negative. That’s good news but we’ve learned that “Absence of proof is not a proof of absence”. In the morning he spent some time painting, he painted some pillow covers. Melinda, Child Life Specialist who’s incharge of the 6W Payroom, has great ideas to keep Andy busy and in a good mood. The Child Life Specialist helps children find ways to express themselves through different activities and play. Andy had physical therapy at around 3:00 pm. He’s still drinking his 1.4 liters of Pediatric EO28. He had a chance to be ‘disconnected’ from the pumps for about 4 hours in the afternoon. He’s not allowed to leave his room. He took a bath at around 6:00 pm., his central line site looks fine. There’s one thing to note, he’s constipated. I haven’t seen any stool in about four days. My first theory for the cause of the ‘problem’ is the calcium he’s getting (via his G-Tube)to cover the Foscarnet medication (against CMV); calcium (tums) caused constipation in the past. My second theory is that the combination of IV steroids (that prevent inflammation) and the first doses of chemo (that eliminate part of the immune response) are helping his colitis. This constipation looks different than the ones he’s had. It’s not a colitis flare related constipation, he seems to be absorbing his formula and he’s still drinking 1.4 liters of Pediatric EO28 a day. Andy has received 7 doses of chemo (Busulfan) out of a total of 16, we still don’t see any side effects. We’re still asking for prayers and positive thoughts so that chemo only does it’s intended job and it doesnt go any further. We just need to open path for the cells that Sofia donated. We received a call from The Jimmy Fund Clinic, Sofia has an appointment at the clinic tomorrow @ 11:00am. ATF
