The crash

Its a given that prolonged periods of time in the hospital are physically hard. The lack of exercise causes lots of things like muscle weakness, bone softening, etc. As I think about Nathan's current state, I'm really just surprised at how fast he went from weak but not so drastic to really, really weak. When Mom was here last week, at the beginning of the week, he was helping decorate the Christmas tree. He was getting down on the floor to put ornaments on. Getting up and down, moving around the room up and down off a stool, walking normally, and just in general still physically doing well. Before Mom left he started eating less and his activity levels crashed. He started limping and soon he was just not wanting to be active at all. He started PT and OT this Monday. Since then he is *so* much more active, his limping is much less frequent and sometimes not there at all, and he is eating more and wanting to play and do more. So he has made great strides in the right direction...and he still can't get up off the floor without something to grab with both hands and pull himself up with. Its just shocking to me how far his physical abilities crashed so quickly. I guess he had weakened but was still doing some fraction of the normal stuff. Then he lost motivation to be up and around and over the course of a few days he just bottomed out.

The single thing that has turned his disposition around the most and been the best for him physically and emotionally has been starting on physical and occupational therapy this week. He still doesn't want to exercise with me, but he loves to "play" with the therapists. They won't be in over the weekend so I'll try and just maintain things by getting walks in and spending some time in the playroom.

Protocol 06-072

This is the protocol Nathan is currently on.

Phase I

The last couple of days have been hectic. Susan, Nathan, and Lauren were off to NYC this morning after getting the go ahead to come yesterday. While it was had getting everything ready and the upcoming week+ is likely going to be hard on everyone, especially Susan, Nathan, and Lauren, it is really a good thing to be getting started on something.

The treatment Nathan is starting next week in NY is a Phase I clinical trial. The drugs being used have been given in clinical trials before, but not together. I haven't found any description or information of the trial online.

From documentation on the FDA's web site.

Phase I Clinical Trials

The purpose of a Phase I clinical trial is to find the best way to give a new treatment and how much of it can be given safely. In a Phase I study a new treatment is given to a small number of patients. For a new drug, the study starts by giving a very low dose of the drug, then the dose is slowly increased as new patients enter the trial. The dose can be increased by giving more at one time or by giving the same dose more often. Physicians watch patients carefully for any harmful side effects. Although the research treatment has been well tested in laboratory and animal studies, the side effects in patients cannot be completely known ahead of time. Phase I study effects may involve significant risks for this reason. They are offered only to patients whose cancer cannot be helped by other known treatments. Phase I treatments may or may not produce anti-cancer effects, but some patients have been helped by these treatments. Once the best dose is chosen, the drug is studied for its ability to shrink tumors in Phase II trials.

So, what is this "neuroblastoma" thing anyway?

My Google News RSS feed on neuroblastoma picked up a pretty quick but informative read on the basics of neuroblastoma. The piece comes from Metro West Daily News, which appears to be a section of the Boston Herald, and is in the format of a doctor's response to a reader's question. It seems a pretty well-written summary of NB, with little information that I disagree with or take exception to (after you've done this NB parent thing for awhile, you even start to disagree with doctors and common assertions about the disease based on your own experience and those of others you know).

So, you can refresh your neuroblastoma knowledge with this primer from Dr. Jeff Hersh.