Well, there are a lot more interesting comments being dropped in Nathan's CaringBridge guestbook. People are angry and outraged, and that is fine and reasonable. I know I have much less readership than Nathan's journal, but I'm not so comfortable addressing this issue there. I guess I feel like in some ways being angry for us is one way for people to cope, and I don't necessarily want to take that away from them.
Areas people are upset about are the (A) waiting/disorganization/perceived lack of compassion from the hospital staff in a couple of instances this week, (B) the lack of answers available to our questions about possible effectiveness and side effects of the new treatment we want to get Nathan on, and (C) the fact that we have to wait to begin treatment until the drug company and hospital can dot all of the Is and cross all of the Ts.
(A) Yes the doctors here at MSKCC don't always communicate the best. Yes sometimes you wait forever and can get lost in the shuffle of things. Yes, I think they could improve. This is not something I'm up in arms about. The flip side is that the doctors and staff are very caring. They may not provide the caring familial feeling we get in our small clinic at home, but they do care about Nathan. Even though he isn't there often, they always remember him and his interests and make him feel good. He has great bonds with some of the nursing staff and the volunteers and Child Life people in the playroom are great. It is sometimes a little mind boggling that what I feel is *the* world-class facility in terms of neuroblastoma treatment can be at times so disorganized. I think one of the root causes though is that they squeeze themselves so much to see as many kids that require intensive therapy and care as they do. How can I argue about that. They see as much volume as they can and then some and they strive everyday to conquer neuroblastoma. To some extend they are jaded and a little harsh, but I'm not going to hold it against them. Yes there are different types of trials and other facilities with NB teams and it is quite possible that the final and best breakthroughs will come from somewhere else. I'm not someone that thinks if you don't take your NB kid to MSKCC you are doing your kid and family a disservice, but I'm glad to be here and think that continuity in care and comfort with a facility is important to Nathan and our family at this point. There may be problems, but I'm an MSKCC fan. I'll take him somewhere else when I think we need a lighter and less aggressive approach for Nathan or when we run out of things at MSKCC, but not before.
(B) When Susan talked about not getting answers from the doctor and getting an "I don't know" response, she was talking about specific questions about side effects and expected response. We could have gotten much better and more voluntary answers about timing, logistics, travel requirements, and etc, but the doctor really didn't know the answers to the questions. Nathan will be the first human patient to receive this combination of drugs. They really don't know if he will have side effects that could keep him out of school. They really don't know and don't feel it is appropriate to conjecture what type of response is possible. They think this is possibly a good therapy, or they wouldn't be investigating and that is about all we can know or hope for. We are out of the world of any type of protocol with any type of track record. They think this might ease Nathan's disease burden and give him time, but there is no prognosis at this point. There is no cure. If you are angry at "I don't know", which you should be and have every right to be, don't direct it at this protocol or this doctor. We are talking about a disease where when diagnosed at advanced stages, which a high percentage of children like Nathan are, sees roughly 40% of those Stage IV kids make it five years. Every current protocol that is not a clinical trial is the protocol developed by a trial that just closed. Kids diagnosed now get different treatment and supporting drugs than Nathan did when he started three years ago. The doctors don't know what causes the disease or how to effectively attack it. Kids are stuck for the most part with trickle down therapies that have been effective in adult cancers. But any doctor worth anything will tell you that kids aren't little adults. Their cancers are different and if there is something to be sad and angry about it is that so few hospitals and organizations are out there specifically trying to find new therapies targeted at kids. So, if you are angry/outraged/shocked by Nathan's story, support organizations that solely focus on finding new therapies for childhood cancers.
(C) This is just crazy. I know that there are real economic issues involved and that from a business standpoint the hospital and drug company must come to legal terms for release of this drug for use in this clinical trial, but to have to wait on legal negotiation (which is what I assume we are waiting on based on comments from the doctor) is terrible. This is a flaw in the system and I could probably ramble on for pages and pages about what I think the root cause is, but it isn' t worth any more time than I already can't help but stress about it. It is out of our hands and I have enough to be angry about without getting even more worked up over this.