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3:39 PM (Randall posting): Sophie and Susan are on their way home. The clinic visit went well and we are poised to begin again with all of the treatments and procedures in this phase of the protocol. One good thing is that there will be no clinic visit next week. Because Sophie does not need another spinal tap for a while, the only treatment she needs is at home (pills and IV injections). Next week the home health care nurse should come and do a blood draw on Wednesday just to make sure that Sophie does not need a transfusion, which would require a trip to Chapel Hill. In a little while I will head out to pick Elisabeth up at school and the four of us will meet in town for dinner and Elisabeth's dance class afterwards.

I spent part of the day today catching up on my reading for school and driving around town to find Detachol, which is an adhesive solvent for dressings like the Tegaderm. Nobody here had ever heard of it, although one place had an alternative in the form of an aerosol. After poking around on the computer for a while, I found a place to buy it online. Not surprisingly, Sophie's doctor sent her home with a new bottle of it! I'm sure we'll be using it as we're going to be trying a new dressing (Mefix) that requires changing three times a week instead of once. Now there will be major trauma in our house three days a week instead of only on Mondays! Honestly, though, it's worth a try.

Assuming there are no hiccups or glitches in the next few weeks, Sophie will begin Interim Maintenance (phase 3 of her protocol) on May 17th. That date is significant because the final phase (Maintenance) is supposed to last until the two-year anniversary of the start of Interim Maintenance. So we are looking at an eventual (distant) horizon of May, 2007, one day at a time.


I am so glad things went well today at UNC-CH. I am also glad you do not have to make a trip next week (if all goes well). Haley had an alergic reaction to Tagaderm in the hospital and then used Mefix. It worked well for Haley. I will be praying for Sophie and the whole family. I found the posting yesterday to be very inspirational, we do have to take one day at a time although it's not always easy.