Changing Things Up

We got some unfortunate news today. Hans' MIBG showed a new smallish spot on his skull. Hans has relapsed for a second time with Neuroblastoma. Surprisingly, the problem area was no where near his arm, which was negative for disease. Hans was unable to go ahead with the MRI today due to his congestion. So - we have no idea if it would show changes or not. So, the right arm is moving to the back burner.

We are working out a new plan. Hans and I will stay in Philadelphia through most of next week. We'll get bone marrows and a head CT (currently the thinking is the tumor is only involved in the skull, but a head CT will reveal if it is actually in the brain). We are also going to try to get a sample of Hans' tumor that has been preserved from his tumor resection in January of 2007. They'll look to see if Hans' tumor has a mutation to the ALK gene. There is a new clinical trial open with a drug that inhibits this gene and is potentially very exciting for controlling NB among kids who have that genetic mutation. We may put him on that trial, before we even get the results of the test.

It is upsetting to get this news. It just plain sucks. We'd love to have been "the ones" that stayed in a second remission until Hans turned 85. But, we're gonna keep trying! As Dr. Maris and his team said today, it is an exciting time for Neuroblastoma research. We can look to the new drugs with the hope that one of them will crack the code on this ugly disease. We continue to hope and pray that Hans and the other kids battling NB and specifically relapsed NB will benefit from breakthrough research. Yet, it is wildly optimistic to think that everything will be okay. But, thankfully, we can be wildly optimistic.

I'd like to thank all of our family and friends who help us with our grass roots fundraising efforts for research dollars through the bake sales and the lanyard project. It is vitally important to us that we feel we're not taking this lying down. I strongly believe that each of us can do something to make a difference in issues that are important to us. Through bake sales and beading projects, even families like ours, that don't know when we'll even be home for sure, can chip away at the problem. Can affect change. But they'd be pretty meager projects if we were doing them all on our own. So we thank you. The giving trees and lunch for life are temporarily on hold, but you can always donate to the CNCF to promote this important research at www.nbhope.org.

Lara