January 26, 2014


When Madeleine was (re)diagnosed eight months ago, and things were very bleak, and very sad, we had an extremely difficult discussion with her oncologist and our social worker, Jessica.  We were told about Madeleine's prognosis, the unlikelihood of her surviving this.  We discussed her treatment plan, but we also discussed hospice care, in case we didn't want to go through with trying to treat her.  After all, the treatment plan was rough.  The prognosis was poor.  The chemo was intense.  It was a lot of suffering, for maybe no payoff in the end.  There were a lot of tears (mine, mostly), and a lot of questions (Ryan's, mostly).  Obviously we chose to treat her.  Somewhere in this discussion (and the point I'm trying to get to) Jessica said to remember that we only have this moment.  Right here.  This moment.  The past is gone, and the future is unpredictable.  All we have is the present.  And we have to live in that present with Madeleine and her sisters.  Even when things look bleak, and sad, and scary.

The MRI results are not good.  It shows significant tumor growth in spite of the MIBG treatment.  We don't have clear results yet because the tumor extends beyond where the MRI was taken.  We don't know yet how much it has regrown.  It is, however, around her aorta, and her renal arteries, again, causing her blood pressure to be high.  This also explains all the pain she has been having.  There is some question about how clear these images actually are because I guess she was moving around a bit during the scan, but with the symptoms that she has been having (high blood pressure, pain, no appetite) it seems pretty obvious that these results are accurate.  There is still a little hope that Dr. Matthay in San Francisco will see something different in this scan, but I doubt it.

We are still waiting for pathology on her bone marrow, but her marrow may actually be clear of disease.  This is good.  The MIBG scan did not show any new spots lighting up....which means, coupled with the MRI, that the tumor has evolved.  This is bad.  It is no longer MIBG avid.  The MIBG therapy did what it was supposed to do and killed off a lot of the tumor that responded to that radioactive isotope.  However, the tumor changed and while still neuroblastoma, is no longer MIBG avid.  I don't think anyone was expecting this to happen.  Our oncologist said that she was shocked when she heard the MRI results because she was expecting something more in line with the bone marrow and MIBG scan results.  We are waiting for a CT and PET scan to be scheduled which will give us a definitive answer to the MRI.

Surgery, stem cell transplant, and immunotherapy are no longer options with disease progression like this.  The doctors are looking into phase 1 trials that Madeleine may be a candidate for.  I know that miracles happen, but phase 1 trials seem like a last ditch effort.  Basically they are looking at mostly untested research options that may or may not have any effect at all.

I don't know what else to say.  The reality of this is crushing.

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.