June 11, 2013


Things have gone very well over the last few days.  It is so nice to see Madeleine laughing and interacting with other people.  Her counts have pretty much recovered and she is off of all medicine except for her blood pressure meds and the nutritional support (TPN) that she gets through her line.

She had a CT scan done yesterday because her doctor wanted to know if the chemo was having any effect on the tumor.  I was pretty sure that I did not want to hear the results of the scan. We've had nothing but bad news for nearly a month and I couldn't face more of it.  When I asked one of the doctors what the results were this morning he said that he didn't know yet but that he wasn't expecting too much change since it had only been one cycle of chemo and normally they don't even image until after two cycles.  He did say that he was very pleased with her clinically - she is walking well (if not far, yet), she is peeing on her own without residual, her appetite is somewhat back, and her counts recovered quickly.  I ran into him later in the hallway and he told me that he was very happy with her scan and that it showed that the tumor is shrinking!  I don't know how much it is shrinking yet because we don't have the final report with the measurements and all that but he said that it appears that it is coming off the renal arteries, and shrinking in size.  Also, the fluid in her lung is less than what it was on the last x-ray.  This is great news!!

We just signed the consent for cycles 2 &3 of chemo.  These cycles shouldn't be as difficult as the first one was.  Once she has recovered from cycle 2 we will go to Denver (pending insurance authorization) for a stem cell harvest.  This is a process where they will extract her healthy stem cells from her blood, and then freeze them.  The extraction is not painful, and they will most likely use her broviac line.  Somewhere down the line she will get an extremely high dose of chemo that will wipe out her bone marrow.  The harvested stem cells will then be put back into her so that she can continue to make blood cells and platelets.  This type of stem cell transplant is easier to endure since it is using her own stem cells rather than those from a donor.

On Thursday Madeleine will have a surgery to have a G-tube placed.  This will allow her to "eat" even when she can't or won't.  The current nutritional "food" that she is on cannot be used for more than a few weeks.  This will be better anyway since the TPN typically has to run 24 hours (meaning carrying around a pump constantly), and with the G-tube we may be able to only run it at night while she is sleeping.  She can still eat normally when she feels like it.  So, they are slowly weaning her off of the TPN and we are trying to increase the foods that she eats by mouth.  Yesterday she ate 6 sushi (veggie) rolls as well as some other things.

Another awesome thing is that we may be coming home soon!   Of course, we have to come back on Monday or Tuesday for cycle #2, but a weekend at home, together, would be amazing.

One of the perks of being a cancer kid (ha) is that Madeleine gets to have a wish granted through the Make a Wish foundation.  Originally she discussed wanting to go on a Disney Cruise.  However because she is not currently able to travel (the fluid in the lung thing means no air travel - although hopefully that is resolving itself) we spoke with her about doing something locally.  Our social worker gave us some possibilities and Madeleine has chosen to have an awesome playhouse built in the backyard complete with trampoline and zip line.  Apparently this can be built at any time we just need to pick a date.

It's hard not to feel optimistic when we have received such great news.  Everything I said in the last post is still true, and she still has a huge uphill battle to fight to get rid of this thing.  It is nice, however, to feel like we are winning the first fight.

                                                               With her new wig.


Ericka said...

Hope is a very good feeling

Siobhan Niklasson said...

Yay, she looks like herself here. Glad she is feeling well enough to go home for a few days! That'll be awesome.

Maya and Ian said...

Hi Amber and family-
so so good to hear this news! Thanks for keeping us all posted. We're rooting for you!

Juli McK said...

so glad to read this, here's to more hope and optimism! love to you all...