Sunday, October 18, 2009

There's no place like home.

I have a lot of non-cohesive thoughts rambling around my head and I feel like I need to mentally vomit.

On November 12, 2009 we are scheduled to start the first of Rachael's interferon treatments.  This will last for one year.  On Thanksgiving she will be on interferon.  And Christmas.  And 4th of July and next Halloween.  She will spend her 6th birthday on interferon.  Next summer she will be on interferon.  She will be on interferon when she starts the 1st grade.

Have I mentioned before that cancer sucks?

Anyway, in between treasuring and soaking in these next three weeks, I am busy researching what the best course for her treatment will be.  I am not inclined to journal about the choices because this is a decision that needs to be made by myself and Tom and her doctor with the help of a few people on a certain bulletin board (hi MPIP readers!) and I have found that some comments meant to be helpful are in fact, not.  But the decisions are tough when the data is so incredibly limited.

Have I mentioned that pediatric melanoma is super rare?

Tonight, my friend Amanda was having a massive girls sleepover at her house and invited Rachael so naturally I was over there as well so I could hang out with Amanda.  Because getting to spend almost 24 hours talking non-stop on our last trip to Houston wasn't quite enough and we needed to catch up some more.  I was thinking how glad I was that Rachael was getting this fun time because we don't know if she'll be up for it when she starts treatment.  But, as I was about to do her heparin flush I noticed that the dressing covering her cathater was practically falling off.  Not good.  Not good at all.

Long story short, I had to do a sterile dressing change on her and it pretty much ruined her night.  I know she was tired anyway and it was a terrible time to do it but we had no choice.  It's just heartbreaking and unfair and I'm not sure what the next step after denial is but I'm thinking maybe angry might be accurate.  She did bounce back and want to enjoy the movie but the cries in the middle of the dressing change of "I want to go home!  I want to go home!" pretty much convinced her that even though she had been having a blast and the movie was good, really, truly, she just wanted to go home.  So she's sleeping in her own bed tonight.

And I'm glad.


  1. Danielle, you know lots of folks are here...kind of waiting on the fringes...waiting for ways to help (beyond meals even--before, during and after interferon). Don't hesitate to share your needs...meanwhile, I await word from Amanda in that department.


  2. Danielle,
    We're here...please don't hesitate to ask for help when you need it or a friend to talk to. In the meantime, I am committed to be praying for you, Rachael, and your family.
    --Connie S.