First, we want to start by thanking everyone for the outpouring of love and support we've received this past week. It's been so difficult dealing with the news that Paige's disease has progressed. Actually, it's been almost as difficult emotionally as when she was diagnosed. While we didn't expect this much new disease, we suspected there were new areas in her head. About a week before she was scanned we noticed there was an area between her eyes that looked slightly discolored, similar to a bruise. From all the research we've done we knew this brusing was a common sign when there is metastasis to the orbital (eye) areas. Since the oncologists in Ann Arbor had only ordered a CT of the abdomen, chest and pelvis we paged them the morning of the CT to request that they also scan her head. With some resistance they finally agreed. The night we returned home (Thursday) Paige was crying and holding her eyes while she was sleeping. So, the call Friday morning only verified our worst fear.
Today will be her fifth and final day of chemotherapy. This is the first time she's had it as an outpatient and it's been nice to come home at night. They will wait another 2 weeks then begin another 5 day cycle. Paige is tolerating it well with no side effects. The major problem with one of the chemo drugs (Irinotecan) is severe diarrhea, which can lead to dehydration very quickly in someone Paige's size. It's such a common side effect that we have to wait 3 hours after the chemo infusion is complete. If she were to have diarrhea during this time they would give her a drug called atropine and then start her on immodium every 2 hours. We're keeping our fingers crossed that she doesn't have to go through that.
We have started giving her morphine for her complaint of pain in her eyes and legs. She's only required a few doses and it seems to control it well. We realize that she's been fortunate to go this long without pain, but it's very frightening to see these symptoms suddenly appear. We continue to pray that this will be the right combination of drugs to work for Paige. In the mean time she keeps us smiling and laughing with the antics of a typical 2 year-old :)
Love,
Andy, Sandi & Paige