Wow, I received a ton of email after yesterday's posting on relapse. I have clearly been remiss in writing about neuroblastoma as of late. I apologize and I will take your words of encouragement to heart.
In fact, I was so inspired that yesterday I set up 3 online neuroblastoma seminars for February. We have plans for doing about 20 seminars on neuroblastoma treatment issues this year. In fact, I am applying for a grant to help cover the costs for some of the video production, hosting and distribution. The grant proposal is due next week. I better get to work. There is much on the horizon. Regardless, I will do better and I will write more. Thank you.
All of the emails I received yesterday essentially confirmed what I was talking about. Family after family wrote to share their experience and most fell into the category of feeling completely overwhelmed and "underknowledged" about relapse. There were a few families that wrote that fell into the same category as our family. They had a supportive and knowledgeable medical team and that seemed to be key. Ironically, a few of them specifically wrote about their great relationships with oncologists who have a reputation for being less than "snugly." I mention that only to say that perhaps everyone should have an open mind when dealing with the experts. That is an important point. I know that first hand, there are a few oncologists that I deal with that have had horrible reputations in dealing with families issues. Yet, I found them to be the most honest and straight forward. It makes you think. What kind of oncologist do you want the support of - one that tells you want to hear, one that gives you the cold hard facts, or something in between?
There was another great point that was made in a few of the emails that I don't want to leave without mentioning.
There, I said it out loud. Many wrote to point out that a single strategy for relapse was nearly, if not totally, impossible. I tend to agree. At this point, there is no single road map for success. Your child's success very much depends specifically on his or her disease and ability to tolerate treatment. It isn't perfect. You have to play with the cards are dealt - crappy ones - and figure out how to turn the hand into a winner. Many try to make the leap at a molecular level. They believe that if we know the biological characteristics of the disease we can target them specifically. This is the whole idea of personalized medicine - customizing therapy to the individuals disease.
It is a great idea and to a certain extent it is what I am advocating. However, it is still far more sense and far less science.
GASP!! Did he really say that?
Yep, I sure did. Unfortunately there is not nearly enough space to deal with that topic today. So, I will save that for tomorrow or the next day.
Mmmmm purpose. And it tastes so good!