February 24, 2014

Second round

Today is day one of the second round of chemo....that almost makes it sound like she's only had two rounds of chemo, ha!  Today is day one of the second round of the latest chemo.  Recovery from the last round was a bit rough.  There was a lot of vomiting, diarrhea (a major side effect of the new drugs) and a whole lot of not eating.  But then, one day about a week ago she decided she was done with all that and has been feeling really good ever since.  Her appetite is incredible.  She reminds me of a pregnant woman with her many food cravings that come and go.  Her latest kick is quiche.  I've made three quiches in the last few days and Madeleine has eaten 80% of them.  She talked about quiche so much today in clinic that one of the nurses said that she would make her a quiche for tomorrow.  Now, that's an awesome nurse!  

We think that the new chemo is having some effect because of how well Madeleine is feeling.  Once she recovers from this round they will do scans and see what is going on.  With the knowledge that we have now from the most recent scans before chemo started, the surgery that I mentioned last time is not possible.  She has evidence of further metastatic disease, which rules out surgery.  We are hoping that chemo is taking care of that and that surgery can be an option again.


Madeleine gained a wheelchair during our last visit to Jacksonville.  This is something she's probably needed for the last couple of months since we have been carrying her everywhere.  She actually likes her new chair and it's been a huge help to have it at school.  She can get around okay in the classroom, but walking long distances - her school is huge - is exhausting.  She also sometimes has pain in her knees.  Her teacher has been awesome about pushing her around the school.


Claire celebrated her first birthday at the beach!  She didn't think much of the sand, or the water, but she'll get used to it.  It's truly hard to believe that she is one.  The last year has been so awful, and stressful, and just chaotic.  Claire's birth was one little bright spot, and then I just don't know where the rest of the year went.  Claire was three months old when Madeleine relapsed, and she essentially spent her infancy in the hospital.  Her crib in the hospital, until she could sit up, was one of those little red wagons that you pull kids around in.  We put some blankets in there and wheeled it right up next to the parent bed and that is where she slept while Madeleine was in the hospital. 

Laurel is doing great! She is happy at her new school and her gymnastics lessons.  She is full of energy, and full of life.  Here she is riding a horse at a preschool friend's birthday party.

 And that is how you eat an oyster!  Madeleine did not think much of raw oysters, but I'm impressed that she tried it.

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.