January 9, 2014


Wow.  So it's been awhile!

We celebrated Christmas at home in Los Alamos with the girls' grandparents.

We also had Christmas dinner with our friends, the Coopers.  They left that night on a trip so it was our last chance to see them before we moved.  It was difficult saying goodbye to good friends.

Madeleine was hospitalized for fever right before and right after Christmas.  We were actually lucky that she was home for Christmas. The mysterious leg pain that she had right before the second MIBG treatment returned a couple days before the holiday, and has been bothering her since then.  The pain travels from her leg to her chest and back.  By now the pain in her leg seems better, but the chest and back is still pretty bad.  Some days are better than others, I guess.  It's hard to decide if it's getting better or worse.  Medicine only sort of works and none of us have had a good stretch of sleep in weeks.

Because of the fevers that Madeleine had been having (she hasn't had a fever since her last hospitalization), her doctors insisted that she fly to Tallahassee, instead of drive as we had planned.  So, Madeleine, Claire and I flew, and Ryan, Laurel, Bacon (dog), and Gidget (cat) drove the 1500 or so miles.

We are now in our new rental house and are somewhat settling in to life in Florida.  It's hard to actually do anything because Madeleine's pain keeps us mostly home-bound.  On Monday we drove to Jacksonville, 2.5 hours from Tallahassee, to meet with her new oncologist.  Of all of the hospitals that we have been involved with - I think the current count is up to five - Nemours Clinic and Wolfson Children's hospital may be the nicest in terms of the building and the location.  It is right on the Atlantic.  We like the new doctor and are glad to know that they are able to do stem cell transplants and immunotherapy right there.  Hopefully we will not have to travel to San Francisco anymore.  All of her scans and tests are being done this week and next.  This pain is very concerning, especially since it is in all of the sites where she previously had rapid tumor growth.  We will know more once we see the results of her scans.

Madeleine hasn't been able to go to school yet, but I checked out a place for preschool for Laurel that is across the street from Madeleine's elementary school.  I will be signing Laurel up to start next week.


Becky said...

Good to hear you are settling in okay and amazed to see how tall and beautiful all 3 of your girls have grown.

Bree said...

Been checking for an update. Glad you guys are getting settled. Hope Madeleine felt well today.