So, I Think We Have a Plan

Hi -
We had some real ups and downs last week (or, should I just say downs?) with getting information. As of last week, we were under the impression that we'd be traveling this week to UCSF (University of California at San Francisco) to receive MIGB treatment for Hans. Wednesday morning I actually made contact with nurses at UCSF for the first time. I learned that they were planning on having Hans come for a CONSULTATION. I immediately went into a panic when they told me he wouldn't be slated for treatment until Oct. 7th or 23rd. That would mean letting him go untreated (letting this stuff grow in his little body) for too many extra days. Many convoluted emails and phone calls later (I'll spare you the blow-by-blow),but at about 4:55pm on Friday, we 'confirmed' a new plan. Hans will receive one more round of Irinotecan/Temodor this week on an outpatient basis in clinic at TCH. Kevin and Hans will travel to Cincinnati for a consultation next week, the following week he will undergo another MIBG scan. (Please PRAY that the Irinotecan Temodor is keeping his tumors under control - or, better yet, for pretty, clean scans once again). Then the following week, the week of October 27th, will tentatively be the MIBG therapy up in Cincinnati, Ohio. As it stands now, all of us will be going, and my mom will join us up there as well.
It's terribly sad that we won't be able to be right there in California where we have the love and support of Roxie (Hans' Godmother), Megan and Phil, our good friends, the new beautiful baby Desmond who was born on July 16th and who we are all dying to meet, our friend Aimee, who was willing to drive up from L.A. to help give us more love and support, and all of their parents and siblings who we love, and who love us, and they all treated us like family when we were in Santa Cruz, CA for Kevin's Grad program. I think I'm grieving the loss of all that right now. BUT - the most important thing is Hans' timely and effective treatment. So - Ohio - here we come! Cincinnati Children's Hospital is in the Top Five in the country. And, they are on the cutting edge with this MIBG treatment for NB - being one of only 5 hospitals in the country to offer it. Furthermore, we are impressed at their willingness to get Hans on their calendar in a timely manner.
Life has been a little 'intense' these past weeks, as we are trying to figure out how to handle all of this, in addition to crawling out from under Hurricane Ike - but we seem to 'get by with a little help from our friends' and family! Thanks for your support during this crazy time. I keep finding myself saying "this is insane!"
Lara