5:31 AM 7/25/2007

Yesterday I was talking with my veterinarian about my plans with Sydney. Does that sound strange? Well, I don't know about you but I think it is a great idea to always run pediatric oncology decisions by your veterinarian. It has always worked for me. I love the perspective of a DVM. This habit started very early on in Sydney's journey. I guess I stumbled onto this benefit because Bob was not only a close friend but also because he was also Kacy and Hogan's (our dogs) doctor. It was handy to have him around. The really interesting thing was that many of the therapies Sydney was on were also common therapies used in animals. Although the regimens were not nearly as complex as they were in neuroblastoma they were the same drugs, used to achieve the same effects. Often, parallels can be drawn. I like talking to Bob because he understands the science and the medicine of Sydney's journey because he is a doctor who has experience with cancer. When I mention a drug combination or treatment that I envision he immediately gets it and we can move quickly into the meat of the matter. I also appreciate his perspective because he does not treat humans. From an emotional standpoint of evaluating options of a child with cancer his emotions are still very raw. He has knowledge but he has never treated a child before so that level of desperation is still there - that feeling of the unknown that keeps you fumbling for new answers. I guess what I am trying to say is that I appreciate his perspective because he has the medical know how but he also feels my desperation as a parent and experiences, first hand, the need to balance reasonable quality of life. It is good for me to bounce ideas off of him. He gets it.

Regardless, Bob and I discussed my newest treatment goals for Sydney. I outlined the many reasons that I wanted Sydney on Accutane right now. I told him about the neuroblastoma stem cell theory that led me to consider administering ongoing sporadic dosing. I reviewed the benefits of using the 14 days of treatment to achieve the proper pharmakinetics while using a larger time period in between to extend the treatment cycle, to balance quality of life issues, and to get us closer to the availability of another retinoid therapy. All in all, he gave me the impression that our decision was reasonable but the exciting part of the conversation for me was delving into what his other ideas were.

One of them that really hit home for me was his use of Omega 3s, specifically DHA. He has been fortifying dogs diet with DHA for many indications and has seen some pretty remarkable results. This has always been an interest of mine because of some research out of Sweden which showed that high doses of DHA had some efficacy in neuroblastoma. Mind you, this was data in Petri dishes and mice but it was still showing some fairly dramatic effects. The trick to get it to work well in kids is all in the dosing. The dosing need to achieve the same levels found to work in mice would be significant - well over 1000 mg per day and that is just DHA. I child would have to swallow a small pharmacy of giant fish oil capsules. Heck, I am a big boy and it takes concentration for me to swallow even one. I can't imagine that it would be easy for Sydney to swallow even one and she is a pro. The interesting thing was learning how he was getting these doses into animals. The actually have a specialized pump which they use to fortify the food. Potentially this could solve the problem of getting it into kids. In adults they have seen few side effects. In fact the side effects they see at the doses we are talking about is diarrhea, fish breath, and occasional stomach upset but relatively minor in comparison to many of the other therapies.

So what does this all mean. Well, it just has me thinking that it might be time to reinvestigate the science of DHA and neuroblastoma. The barrier to entry that I have always seen has been getting the drug into kids. If that can be addressed, it may make it worthwhile to move it forward. Anyway, I thought it was an exciting discussion and it got my brain working. I don't have many options for Sydney and it is worthwhile to consider things such as this - low risk. I know Sydney, like any of us, could probably use much more DHA in her diet just from a nutritional standpoint and it may be worth pushing the envelope a little bit if the science supports it. I won't do it while Sydney is on Accutane just because of how it is metabolized but it may be something to consider at another time. Regardless, it was an interesting and intriguing conversation. I am so glad Sydney has a good veterinarian.

I am amazed at all of the people that share my purpose.