February 1, 2014

A New Plan

Madeleine's San Francisco doctor still wants to explore the option of surgically removing as much as the tumor as we can.  Her reasoning is that the MIBG therapy got rid of the metastatic portion of the disease - that is the part in her bone marrow, and some of the other outlying parts.  The words that were used to describe this possible surgery were "bold," "heroic," and "cowboy."  This would not be a slam-dunk, and they would not be able to remove all of the tumor.  The idea is that the bits that are left would be taken care of with a stem cell transplant sometime after the surgery.  The surgeons (here in Jacksonville, and in San Francisco), have said that they would do it.  We haven't talked to them yet, but recovery from something like this would be long, and difficult.

Because of the amount of time needed for recovery, they wouldn't be able to treat Madeleine for a little while after the surgery.  The fear is that the disease would again enter the bone marrow while we were waiting.  The plan, as of now, is that Madeleine will start a new chemo combination on Monday in the hopes that it will stop growth, and possibly even shrink the tumor a little to better prepare her for surgery.  It is reassuring to know that San Francisco and our local doctor both came up with this plan independently.  It doesn't sound like this chemo is anywhere near as intense as what she has had before.  She will have chemo Monday through Friday of this week, and then take the next two weeks off to recover.  They would do the cycle one more time and then reassess.  The chemo is being given outpatient, so we don't have to be admitted, but it is IV, so we have to be at the hospital every day.  Madeleine and I are going to Jacksonville on Monday and we will stay at the Ronald McDonald house there (hopefully, if they have a room for us) until Friday.  Madeleine's grandparents, Nana and Pop Pop, are coming to watch Laurel and Claire so that Ryan can go to work.  We are so grateful for our families who will travel anywhere with very little notice.


I'll try to update sometime mid-week, but I don't know what the internet connection will be like where we are staying.


Anonymous said...

It looks like we will still be there for her second round of chemo, so would be able to care for the little ones at that time. Mom

Becky said...

You are constantly in our thoughts and prayers and have been so a lot lately. Hoping so much for a wonderful, no bone marrow growth, outcome. Love you all so much

Milena said...

Since reading your Jan 26 post (10 times), I can't stop thinking about you and Madeleine. Maybe because I have a 4 year old and a 4 month old or maybe just because I'm a Mom. I can *only* imagine how tough it must be.
Sending you lots and lots of positive thoughts and love.

JT said...

We are willing to be stand-in help if you want or need us, or if the other grand-folk cannot make it. I know your kids don't know us, but we could come a couple of days in advance and actually, are really in tune with little ones!! Please, please let us know if there is a need. Wish we could offer more than this, and our hugs and prayers for your family--- any time! email or facebook and we can work it out! XOXOXO!!