Well, as we were driving back from Denver yesterday after having dropped off the rest of the family to head to NY for Nathan's treatment, Julia says to me, "Sometimes kids die". Again I asked her why she was thinking about that. She gave me some story about cars sometimes hitting trees and hurting people. It is so hard to know how deep to go with the kids about serious issues. I tend to take their lead and go as far as they want/need to go. I think it is pretty clear that she is piecing it all together, but that she doesn't quite want to take the train of thought/conversation to its logical conclusion.
She has shown some other signs that could be coincidence, but may not be, along these lines. Apparently when we were away on our last trip she talked a lot about missing Lauren, but little or none about Nathan. Earlier this week she was listing members of our family and omitted Nathan (This one could easily be a coincidence. She doesn't always keep lists and things like that organized in her mind.).
I suppose it goes without saying that I have a lot of fear and concern about Julia. I worry about how our family's focus on Nathan impacts her emotionally and I worry about how it will impact her if we lose Nathan. So we just keep doing the best we can and will continue to do so. Sometimes our best isn't good enough. Trust me on that one. Sometimes our best isn't good enough.
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, you can refresh your neuroblastoma knowledge with this primer from Dr. Jeff Hersh.
Things have been hard on all of us. Jules has been beautiful, but I'm sure there is an explosion of emotion waiting just under the surface for her too. Nathan, I think, had a hard time adjusting to not being the center of everything like he is in New York. I was tired and Nathan kept dashing my hopes of a fun family day by acting out his emotional distress.
Even though it doesn't sound like it, I'm happy to be at home with everyone and had some really nice times this weekend. It has been hard for me to just jump back into it all though.
I wonder who will have the shortest fuse tonight? The kids after a normal weekday school schedule? Or me after banging my head against the wall trying to focus on work? Oh wait, I get to escape right after work to run off some of my anxiety on the basketball court. I sure hope the evening goes okay for Susan, but I'm sure glad I'm escaping the house and everyone in it for a bit.
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.
Every day everyone has to work at these things. Working on them with the weight of the stress, sadness, and grief over the loss of how I expected my life as a husband and father to be is very difficult.