August 2, 2013

It seems to be the trend that 5-7 days after chemo ends Madeleine is back in the hospital with a fever.  This time was a bit easier, the fever was low-grade, blood cultures were negative, and the fever was quickly managed with IV antibiotics.  We had gone to Albuquerque for a blood transfusion and it turns out she had a low fever too.  She spent four days in the hospital for the fever this time, although most of that was actually just waiting for her counts to come back up.  Fever can be extremely dangerous in a person with no immunity, which is why she is admitted every time, even if it is low.

This week we traveled to Albuquerque two days in a row for an MIBG scan.  On the first day a radioactive dye is injected, and then the second day is the actual scan.  The active tumor takes up the dye and it lights up during the scan.  Doctors use this scan to measure how much of the tumor is still active.  In order to get the treatment coming up in San Francisco, Madeleine's tumor still has to be active, or MIBG avid.  This is the only time that we are actually hoping that Madeleine will still be MIBG avid!

Yesterday Madeleine and I were able to visit the Make-A-Wish office to meet our wish coordinator, and to sign papers.  What a blast!  They have a room full of toys (the "wish fulfillment" room), and someone came and played with Madeleine, all while "interviewing" her about her wish and her favorite games, foods, color, etc.  I sat and signed a bunch of papers, and in the end we all played UNO together.  They gave Madeleine a special "Make-A-Wish" Barbie to take home, and one for Laurel too.  Talking about Madeleine's wish has gotten her that much more excited about our trip to Disney World!  I just received the airfare confirmation.  Our trip (pending low counts, fevers, or any other disasters) will be from Aug. 28 - Sept.3.  We will be staying in a hotel in Albuquerque on the night of the 27th, because our flight is at 6 am! On the third we are going to fly directly from Orlando to San Francisco so that Madeleine can be admitted to UCSF hospital the next day.  Wow!  I'm already impressed with Make-A-Wish for being able to squeeze this trip into this small window that we have before treatment in SF starts, and especially for flying us all the way to San Francisco to get her there in time! We are all getting very excited about the trip.  Make-A-Wish pays for everything: airfare, rental minivan, hotel stays, even food and incidentals.  They don't pay for souvenirs, but Give Kids the World, the place we are staying, is known for dropping off presents every day. Woo hoo!

Next week, on Tuesday, Mad and I fly to San Francisco for the consultation with the doctor there for the MIBG therapy.  This should be a fun trip.  I love San Francisco and am excited to show her some of the sights.  We come back on Thursday, and then are being admitted to UNM on Friday for chemo #4.

Besides hospital visits and trip planning, the girls have been thoroughly enjoying the summer.  As I write, they are outside with the neighbor girls playing detective, and painting rocks, and eating popsicles.  I am so glad for these days of play.

7 comments:

JT said...

Good things all around! Thanks for the update and so looking forward to your wish trip and all!!
xoxoxo
Janice

Bree said...

Great update! Love hearing about Mad's wish. Xo

Adelaide and Harleigh Morris said...

What a good update, it is heartwarming to hear of all Make a Wish is doing, and also to hear of things going as well as can be. No family deserves it like y'all do!! I hope all of your hopes and wishes get fulfilled (and then some) for the trip and this therapy!

Nbaumbach said...

Thanks for the update. All the relatives in Michigan are reading it and wanted me to tell you how much they appreciate your writing the blog. Madeleine and the whole family have a lot of positive thoughts and prayers coming from them.

Nana Nancy said...

Thanks for the update. All the relatives in Michigan are reading it and wanted me to tell you how much they appreciate your writing the blog. Madeleine and the whole family have a lot of positive thoughts and prayers coming from them.

Anonymous said...

I have never left a comment on this blog. I stumbled upon Madeleine's site several years ago and have checked back every once and a while to see if there are any new updates. I was so shocked to see that she has relapsed! I am so glad that she is responding well to treatment. I will be keeping her in my prayers!

Janet Martinusen said...

Hi Amber! Your dad was kind enough to share your blog site with us to keep up with all that is going on. You are all in our thoughts and prayers.
Have fun in Disney World!