so proud of Hans!

I'm so proud of this kid right now.  We had something  going on -I didn't mention it to hardly anyone until I knew which way I'd go with it.  I had a feeling that I had better get another iron in the fire for a little while.  On a whim, I sent an email to Dr. Sholler in Michigan a few weeks ago.  The result of that email was a consult in San Diego set for Sept. 10th.

I had been all over the map about this consult.  I am aware that one of my personality strengths is being able to see the plusses and minuses of all possibilities.  The flip side of that strength is that I struggle with making a final ultimate choice sometimes!  San Diego is 225 miles from home, a four hour drive  (better than a 5 hr flight to Michigan to see Dr. Sholler,) but a four hour one-way drive and a day in a new hospital is a lot for a boy whose legs are really hurting him and who is not getting around so well. The decision was really getting to me, and I was a real mess!  I went to bed on Saturday night 99.9% sure we wouldn't go.  But, for some reason (Kate's blog comment maybe??) I woke up on the fence.  Kevin was really supportive and just kept saying I needed to do what I needed to do. Elle had a strong feeling that we should go.  (Elle gets feelings about treatments sometimes and they have always been right.)  I talked to Hans about 7:30 at night and we had a real heart to heart.  He has a lot of anxiety about going around to other hospitals, and is clearly against it.  He wants to get better, but he'd  prefer to get better from LA, or even Bakersfield, or the couch!  But, Sunday night, he was able to buck up and do it for his mama. I explained to him that I thought it might be important to go talk to this other doctor in San Diego.  I asked him to trust me on this, and to do it for me if he thought he could.  He came around, he said "FINE".  And then he started giving me his list of conditions! I was so relieved my big boy made the final choice so easy for me! 

We left at 6:30 am yesterday and didn't have too much terrible traffic through LA.  We were able to meet up with our friends the Hutchisons.  They were the perfect ambassadors to San Diego. They treated us to a great chips and salsa lunch in Old Town,  let Hans loose in a candy/tshirt shop, and even called in a few favors at Rady Children's in SD. We were given royal treatment.  By the time we got all the way down there Hans needed a bed and a little push of IV pain meds.  The nurse recognized that before I even did!  Amazing.  Hans was so cute, when I said "They're treating us like royalty", he said, "Yeah, they're treating us like the Queen and Prince of San Diego!!! "

Rady's Children's in San Diego is a full partner in the Neuroblastoma Medulloblastoma Translational Research Consortium.  This is another perspective on NB offering  options that differ from those offered through COG and NANT...  The SD doc fully endorsed our next step - going ahead with the chemo/stem cells, and suggested one or two trials Hans MAY be able to qualify for after that. Anyway, we're in the system, and a whole new Consortium of options may be opened up for Hans.  Everyone left the meeting with the same idea.  Hans is in charge.  We're not switching docs, or hospitals, but we are open for all collaboration of ideas on how to help our boy.  It was a 16 hour day.  It wasn't easy for Hansie, but I felt so very proud of him!  He trusted me and got that trip done.

The Hutchison's spoiled us even more.  Neil grabbed my keys and topped off our tank!  Who does that???  I felt like, oh my gosh, in Philly we have the Tennesons, in San Diego we have the Hutchisons.  Two more miracles for Hans (and the rest of us too).   Hans got to meet Charlie and Andrew.  Neil and Margot brought them up to say HI at Rady's before we headed north.  All I can say is I just hate it that I never get to meet soccer-playing, awesome smart sweet fun Sam who lost his battle to NB two and a half  years ago.  Neil and Margot have done a lot for NB and for me, personally.  I reached out to them when Hans first relapsed and I was so desperate!  We made it through LA traffic and home by 9pm, with only a pit stop at our favorite Hawaiiian BBQ on Sunset!

 As I type this we are getting blood at CBCC in Bakersfield.  Poor Hans had to get here at 7:30 am for the first lab draw, the infusion was scheduled for 1pm, but they brought us the wrong bag o blood.  I freaked b/c his HGB was 5.5:(  They brought the right bag and the nurses are working overtime to stay with him til he gets his last drop.  Stressful week!  Hans goes in for another CT scan and a meeting tomorrow.  We are hoping to get the final thumbs up for our chemo plus stem cells.  Hoping and Praying!