9/16: What a Week...
This was a very traumatic week; it was probably the worst week since the diagnosis in June. It all started with an emergency surgery Monday to remove Leo’s venous port and debride the ulcerated sore just below. We spent most of Tuesday just waiting at Children’s Memorial Hospital in Chicago. Wednesday Leo went back into the operating room to change the dressing and went home in the evening. Thursday things seemed to get closer to “normality” in our new world order. Leo started back on antineoplastons, but at a lower dose: 100mL of A10 and 10mL of AS2-1.
Friday our home health nurse drew blood from Leo’s catheter, which thankfully returned normal results. More concerning was that the wound in Leo chest was “tunneling.” If the wound, itself, which measures about 1” diameter and about ¾” depth, wasn’t big enough, it’s making its way into the emptiness of the port’s old location. I called Children’s and of course no surgeon was available, so I finally spoke to nurse Teri. She claimed this was normal and even expected. I asked her if we should be doing something different (i.e. better). She asked what we were told to do. I explained the daily dressing changes. She said in that case, we’re doing everything right. So even though I asked the same question several ways, she gave hedging non-answers!
Saturday the tunneling looked bigger. The nurse said it went from about ½” to about ¾”. Progression never seems to indicate a good thing lately, so we paged a surgeon – any surgeon – at Children’s and the first year resident answered that had no answers while we were at the hospital. Although he said the same thing as Teri the nurse, he suggested making an appointment to see Teri the nurse, who happens to be their wound specialist, on Monday or Tuesday. Leo seems to be a merry-go-round of horror with these “doctors.” We’ve already started calling around for other pediatric surgeons, but unfortunately ran into the weekend.
Most importantly, Leo seems to be doing better. Saturday morning we increased his antineoplaston doses to 120mL of A10 and 12 of AS2-1. We are also continued decreasing decadron by another 1mg, so he’s down to 10mg per day! It looks like we may be able to keep decreasing by about 1mg every week or so, as long as his actual tumor symptoms don’t get worse. And if they do and an increase is required, I’ve started looking into all sorts of other, more natural, anti-inflammatories to try to avoid decadron/dexamethasone at almost all costs. There’s also one called Xerecept, but unfortunately it’s in Phase III trials and we’d have to get a compassionate use exemption from the FDA. Another family did get one and said the FDA didn’t get in their way at all, so this may be option we may consider exercising, again, if needed. The good thing about this synthetic steroid, so far, is that it doesn’t seem to have any side effects, or at least nothing like decadron. G-d willing we won’t need to go this route at all.
Friday our home health nurse drew blood from Leo’s catheter, which thankfully returned normal results. More concerning was that the wound in Leo chest was “tunneling.” If the wound, itself, which measures about 1” diameter and about ¾” depth, wasn’t big enough, it’s making its way into the emptiness of the port’s old location. I called Children’s and of course no surgeon was available, so I finally spoke to nurse Teri. She claimed this was normal and even expected. I asked her if we should be doing something different (i.e. better). She asked what we were told to do. I explained the daily dressing changes. She said in that case, we’re doing everything right. So even though I asked the same question several ways, she gave hedging non-answers!
Saturday the tunneling looked bigger. The nurse said it went from about ½” to about ¾”. Progression never seems to indicate a good thing lately, so we paged a surgeon – any surgeon – at Children’s and the first year resident answered that had no answers while we were at the hospital. Although he said the same thing as Teri the nurse, he suggested making an appointment to see Teri the nurse, who happens to be their wound specialist, on Monday or Tuesday. Leo seems to be a merry-go-round of horror with these “doctors.” We’ve already started calling around for other pediatric surgeons, but unfortunately ran into the weekend.
Most importantly, Leo seems to be doing better. Saturday morning we increased his antineoplaston doses to 120mL of A10 and 12 of AS2-1. We are also continued decreasing decadron by another 1mg, so he’s down to 10mg per day! It looks like we may be able to keep decreasing by about 1mg every week or so, as long as his actual tumor symptoms don’t get worse. And if they do and an increase is required, I’ve started looking into all sorts of other, more natural, anti-inflammatories to try to avoid decadron/dexamethasone at almost all costs. There’s also one called Xerecept, but unfortunately it’s in Phase III trials and we’d have to get a compassionate use exemption from the FDA. Another family did get one and said the FDA didn’t get in their way at all, so this may be option we may consider exercising, again, if needed. The good thing about this synthetic steroid, so far, is that it doesn’t seem to have any side effects, or at least nothing like decadron. G-d willing we won’t need to go this route at all.
posted by Yury at 5:16 PM
1 Comments:
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