July 7, 2013

Denver Bound

Madeleine was released from the hospital on 7/4 - just in time to see our local fireworks.  She said that seeing the fireworks was "the best night ever," so it was definitely worth all of the effort getting her discharged on time.  Our doctor was on the phone all afternoon trying to get everything set up to get her discharged on time.

Just in time

Madeleine came home on antibiotics to finish clearing up the infection that she had that landed us in the hospital.  We have spent a nice weekend at home.  Her counts are way up so she is free to play with other kids.  We even went out to lunch a little bit ago and were very surprised when the waitress said that another family had completely paid for our meal!  We don't know who it was, or why (my nearly-bald child is the only reason I can come up with) but we are very grateful.  Gotta love Los Alamos!

We are getting ready to go to Denver early tomorrow morning.  We are to go directly from the airport to the hospital for a consultation, and then I'm hoping that we will have the rest of the day free.  The stem cell harvest will begin on Tuesday and take two to three days, outpatient. The doctors are hoping to get enough stem cells for three "rescues."  In the near future her bone marrow will be completely wiped out by high-dose radiation, or chemotherapy, or both.  The stem cells that they get this week will then be reintroduced to her body so that she can begin making her own blood cells again.

This week we found out that UCSF wants Madeleine for a special treatment called MIBG Therapy.  This is a relatively new treatment for relapsed neuroblastoma and will take the place of standard radiation and bone marrow transplant.  Her oncologist has said all along that this would be a very important piece of Madeleine's treatment so we are thrilled that they want her.  MIBG therapy uses radioactive isotopes (I think), that go directly to the tumor and (hopefully) destroy it.  We need to find out a lot more about it, but it sounds like they will want her either in early August (after her 3rd cycle of chemo), or early September (after the 4th cycle).  This treatment is expected to last until December, and after that, if all goes well, we may be done with treatment!  I believe that she will still have surgery somewhere in there too.  Ryan is delaying his start/end work dates again so we will be living here until December, at least. 

I will not have my laptop with me in Denver but I will try to update here if I can.  If not you can find me on Facebook for shorter updates.  With the crazy amount of medical supplies I have to schlep with us, I don't think I will have room for the laptop too.


More sillies
The only way to travel with an IV pole.
Claire enjoys her first food - pickles!

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