48 the countdown to 2

"Nothing in life is to be feared. It is only to be understood." Marie Curie

The view from Hans' Room

This is Hans after MIBG infusion tonight. He let me take the pic, but wouldn't smile -such a tough guy.

Hans has been infused with the MIBG. Since I don't think I've told you in a while, I'll tell you what we are doing here. Hans' tumors both in his bones and his new soft tissue lesion, are MIBG-avid, meaning they light up on the MIBG scan. About 20 years ago or more, Dr. Kate Matthay, right here at UCSF, had a bright idea. She thought that since the radioactive isotope can be used to illuminate Neuroblastoma on an MIBG scan, why couldn't she jack up the dose of that isotope and wipe the disease out? It worked! Some patients show a complete or partial response to this therapy. Hans had this therapy back in 2008. It wiped out one bony lesion in his arm that has never recurred and put him into a second remission that lasted him nearly one year.

I've gotta give it up to our ladies of science and medicine. Hans was dosed up with 320 millicuries of the radioactive isotope this afternoon in a one hour transfusion. Thank you Madame Curie for your early foray into the field. Hans is a little invisible light bulb of radioactivity right now. Me and the room and the staff are protected from him by time and space. For the next several days Hans will live largely on his own in a plastic-covered, led-lined room. I am seated just outside his door. Each time I enter the room to help him, I must wear booties, gloves and a gown. I wear a dosimeter and record my exposure numbers, wand myself for radiation exposure, and remove the booties, gloves and gown before I leave the room.

Isn't amazing how research investments of both 20 and 100-some years ago are coming together for our boy? Isn't it also shocking that these treatments that sound so barbaric are STILL the treatments we use to save these kids?

After the transfusion was complete, Hans measured at 48 mR/hr or "rads". We discharge at 2. Hans is roughtly expected to drop by half each day. If that is the case then we're looking at 24 Fri, 12 Sat, 6 Sun, 3 Mon and 1.5 Tues. Hans has an MIBG scan scheduled for 4pm on Tuesday, so we hope to be out by then, if not before!

They want me to limit my physical contact with Hans to no more than 25 minutes in the same room with him today. That's the hard part of this therapy. Usually that's about all I've got. "Mama's got ya" is my go-to comfort phrase. But, for a few days I really won't. He'll be on his own.

Poor Roxie will be up here just as soon as she can after a string of rotten car
troubles:( She hopes to be here in the AM! Kevin may make it up here tomorrow afternoon! That's cool. He has a well keeping him very busy. I just got a text from my mom that she can't stand it and she bought a ticket! I got a special delivery from Megan and Kim this am. They trekked up from Santa Cruz with Jack in the Box! That is a blessing cuz I couldn't have left to hit the Jack across town and leave Hans alone today. They also sat with Hans while I registered for our room at the "family House" today. Kim brought lunch:) Sweet.

Now we'll just be bored and isolated! Hopefully there will be no real problems. One of the biggest hassles with this therapy is that we have to give Hans Potassium Iodine drops every 4 hours around the clock to protect his thyroid from the radiation. UCK. That goes on for TEN days. I'

Debbie has Elle and she'll be on her way to TX soon to be reunited with her old girlfriends for the long weekend. (This was her christmas wish.) We selected her travel dates before we got MIBG dates. At first I was terrified. How could I have one kid in SF, one kid at LAX with a daddy who's tied up with his well hitting 'total depth' in Bakersfield??? It all worked out! Thanks again Debi and Deanna and Larisa and Aimee for offering to help, too!

Thanks to Hans' Doll of a Lego Fairy Megan!!! Lego Aliens Attack space ship was put together in our days at home and is already dangling from Hans' ceiling. As soon as Kev and Hans get all the flying lego sets up, I'll share a pic. It has been quite a project.

Thanks for checking up on us. We're hanging in there. We just found out CHOP could have taken him next week. It is truly an INCREDIBLE feeling that teams of docs all over this country are working together to take care of our boy!