At the end of last week, we felt it prudent to culture some of the open wounds that Rafi has to see if there were any active infections. Sure enough, the wounds cultured positive for staph. Not a real surprise and it’s something we fight against every day. We are still waiting for the sensitivity reports to see the best way to fight the infections. The sensitivity reports tell us what antibiotics will be ineffective against the infections. We are hoping that the staph is not MRSA. We won’t be surprised if some of the wounds are infected with MRSA as Rafi has already battled that little bug. We are using a diluted bleach and soap bath with plenty of bactroban (an antibiotic topical cream) on the wounds for now. So far, the wounds seem to be getting better and seem to be less infected. In speaking with Drs. Wagner and Tolar today, and after meeting with an infectious disease doctor, we decided to delay the beginning of the chemotherapy preparative regimen until she is free of infections. It is the safest and most prudent thing to do at this point. She must be free of infection before we give her that first dose of busulfan.

We are still going into the hospital tomorrow to harvest her stem cells. We go in at 7:30 am, and she will get her fifth dose of the GCSF and then get hooked up to the apheresis machine. We think it is going to take about 6 hours. It is our hope that the pressure that the machine will exert on her hickman line will not collapse it. At this point, we have some confidence that by slowing the flow of the machine down, and thereby increasing the time she is hooked up to it, that it will allow the hickman line to hold up. The pediatric surgeon who placed the hickman line believes it will work as do our other doctors. We are banking on the strength of our sheer will to make it so.

The GCSF infusions were easy on her and easy in general. We push in 1.5 – 2 mls every couple of minutes until the syringe was empty. The whole process takes 15 to 20 minutes. Rafi had absolutely no negative side effects from the GCSF. We kept asking if she was feeling alright and her answer was always “I’m fine”. Those words were always followed by “I want to go to the treasure chest.” At the BMT clinic, there are a host of donated toys in a chest for the kids to take. She’s taken a little pink pony with long dreads, an elephant notebook to draw in and, this made daddy very happy, a small nerf football. To complete the let’s make daddy happy thought, Rafi now wants to learn how to play golf. This is all because of a “life’s been good” t-shirt and a hat I have that have golfers on them. I am looking forward to playing golf with her one day.

Rafi has now amassed a small war chest of toys and “beads of courage” as she constantly receives these things from the wonderful staff at the hospital. The people there are really amazing. They have made the hospital a fun place for her and not something to be feared. She is becoming less nervous around people she has never met and I really attribute that to the way everyone treats her there. They are proactive and they are kind and they are always professional. We couldn’t ask for a better group to take care of our child.

Thank you to everyone who has emailed through the site, emailed us on our personal accounts, left comments on the site, and just sent good wishes to Jackie and I. The outpouring of support is amazing and we very much appreciate it.