Monday, March 10, 2014

6 Months Post-Chemo

Scarlett had an MRI last week.  It was clear!  We didn't have too many concerns, but that doesn't mean much.  She's doing great, so we will wait another three months before we scan again.

We had to wait quite a while for her turn in the MRI, so daddy made sure to keep her entertained.


She is teetering on the edge of 30 pounds, and has grown just tall enough to need 2T and 3T clothes rather than 24 months.  The doctors are watching closely to see that she continues to grow, as children with such extensive tumors and treatment often do not grown appropriately.  So far, she's okay (still short for her age) but we are watching carefully.

We have noticed some strange episodes, and we are all pretty sure she is having seizures. This has come up several times, so it is not much to note, but this time I think she will need medication. Her doctors are not concerned, and have essentially been waiting for this. They know we don't want to give her medication unnecessarily, but the concern that these seizures may disrupt her cognitive development is mounting. We would rather give medicine twice a day than have her regress or be uncomfortable. 

A little medicine is minor for us, so we will see how it plays out over the next few months.  We are also going to be seeing an ENT specialist to see if they can give us any insight into Scarlett's swallowing difficulties.  We can only attack one concern at a time!

I found out this week that a piece I wrote about Scarlett will be published in a medical journal.  Narrative Inquiry in Bioethics is publishing a special edition all about parent experience with pediatric brain tumors.  My piece was chosen as one of the few to be included in the printed journal, so I am very proud!  I will share it as soon as it is officially out.

In my last post, I mentioned NickyBear, who entered hospice.  He passed away this weekend.  Another baby lost, another family shattered by brain cancer.