Super Sunday

Hi again,

It's been a few days since I have posted and our news is settling in. Actually it seems more surreal than anything else. I keep rolling it over in my mind - how did this happen? It doesn't usually turn out this way. I think that Hans' tumor simply has the mysterious feature of being responsive to therapy. If only all NB tumors had this feature. I also think we were on the 'opportunistic' side, and tried to maximize our treatment options for the specific features of Hans' tumor. I feel that while this may not qualify as an official miracle. It is our miracle.

We never would have been able to do this last 9 months of treatment without support. We thank everyone who has kept our Hans in their thoughts and prayers. We feel so deeply indebted to our friends, family, our Sparrow Club - the Highlanders for Hans, and to each and every family that donated miles to Careforce. We have already been able to make four trips to Philadelphia on donated miles. There at CHOP, the no. one Children's Hospital in the country, with the MIBG therapy, we have found a little bit of hope. This is the HOPE we have clung to like a life raft. The thing is that MIBG doesn't work for everyone. But, we thought it could for Hans. Two features of his tumor were indicative of that - it lit up when we did the MIBG scan (this said that the MIBG isotope knew how to find it). And, his tumor was in the bone, which is better for MIBG therapy compared to soft tissue.

Our next step is to try to keep it away. This is no small feat, no one knows how to do this with any confidence. In fact, relapsed NB is still considered 'incurable' even once you get rid of it. But, Dr. Maris has an interesting suggestion for us - he is going to try to put us on an oral chemo pill (ABT751) that will hopefully keep the beast at bay. But, this is an experimental drug now being tested for kids with active disease. He has to renew a contractual agreement with the drug co. to get Hans on it. Kevin and I feel pretty strongly that we should be following Dr. Maris' recommendations at this point. And, Dr. Maris and Dr. Russell work really well together, so we'll be able to do all of our local and follow up care and our endocrine stuff at TCH with the docs, nurses, staff and other families that we
all love and rely on...

Not to make this post too long - but, thanks to Gr. Kathy for coming down and for the gifts you showered on all of us! Have fun in PHX next! I think Elle and gr. Kathy had a ball without us. And thanks to Claudia Podowski and fam who has made a generous miles donation!

Happy Superbowl Sunday - don't eat too much today, haha... Hans is rooting for 'the red guys'!

Love, Lara