9/9: Second Check-up Since Houston

Leo has been stable over the last few days. The antineoplaston-drink-sleep cycle is now missing the eat component because of the thrush, though. He has been eating very poorly, but getting slightly better. We decided to go to Leo's pediatrician a few days early and went today because Dr. Kroin was available. Things are more or less ok. His weight remains at about 35 pounds. Where to start...top or bottom? Let's go top-down.

The trush in Leo's mouth has gotten a little better, but instead of nystatin the doctor recommended diflucan. We confirmed with Houston that there shouldn't be any issues with the antineoplastons and now instead of 4 times we can give Leo diflucan just once a day.

Next we showed her little red or purple dots that have developed on Leo's torso and are starting to appear elsewhere. This seems to be yet another side-effect of decadron, since his red blood counts are reasonable.

The abscess near Leo's port was of concern. There is a scab there, but it feels soft underneath, as if it's not healing as well below. This is probably because that entire area is always covered with gauze and tape to protect the port and the scab, itself, on which we've been putting antibiotic ointment to prevent infection. So there's very little air circulation there. She suggested taking Leo down to Children's Memorial in Chicago to see Dr. Reynolds, the surgeon who implanted the port. Her thinking is that Dr. Reynolds may be able to move the port, but this would require surgery and all its risks of course. Obviously we're going to do our best to prevent surgery, even if Leo has to be shirtless for a few hours each day with that area without a dressing.

Leo's red butt has now become more pink, so the heavy duty desitin seems to be doing its job. On the other hand, last night we noticed little white spots or bumps on Leo's, as they say, "diaper area." This seems to be the case of the thrush making its way down there. Don't know how, but now we have nystatin topical cream.

In summary:

1. diflucan liquid for oral thrush
2. nystatin cream for diaper area thrush
3. decadron pills for brain swelling
4. pepcid pills (going to switch to prevacid chewables) against decadron's effect on stomach lining
5. desitin cream for butt redness
6. lactulose syrup for constipation
7. black elderberry extract syrup for immune system boost
8. colloidal silver as anti-inflammatory
9. antineoplastons to beat cancer

In our own analysis of Leo's physical condition, it seems to us that decadron has caused Leo's state, possibly more than the tumor:

1. He started to dislike walking after we started him on decadron after the initial diagnosis in mid June. The radiation people lowered the dose from 10mg to 8mg within a week, but since it had been such a short period of time, there was nothing to gain in either direction.
2. In Houston his dose was immediately increased back to 10mg and he stopped walking and talking normally, but he was still able to move around and stand.
3. Once we got home, because of headaches, his dose was again increased by 2mg, to 12mg daily. After this, he basically stopped moving, making "normal" sounds, and sometimes has trouble holding-up his head, etc. Naturally all the other side-effects, like the weight gain/water retention/sleeping trouble/etc., got worse as well.

The point of this analysis is that we need to get Leo off of decadron as soon as possible. At the same time, to help with the muscles and movement, we have an order for physical therapy and are going to start in a few days.

Finally, because Leo doesn't move around too much, he's developed a slight heat rash on his back, so we need to find some sort of bed, mattress, or recliner (which may be ideal) that he can lie on and not be hot and sweaty all the time. He needs some sort of airflow to his back, since he lays so much. The family is looking into what hospices do or products they use. Do you know of anything like this that may help a 35 pound 3 year old?