The end of Interim Maintenance

Friday, May 4, 2012

Had an amazing week last week.  My mom flew in to help with Sadie, and ended up taking care of me instead.  I went shopping.  I went out to lunch with Dave.  I shopped and went out to lunch with a friend.  I took naps.  My mom cooked and washed the dishes.  It was a refreshing week off, and I was completely spoiled.  Thank you Mom! 

Interim Maintenance was much worse than I expected.  I had worried about the hospital stays and what to do with Andrew and Evan.  That turned out to be rather managable.  The side effects from the high doses of Methotrexate and the Vincristine turned out to be our biggest challenge. 
We expected Sadie's last round of high dose methotrexate to really knock her out, but to our surprise, Sadie escaped without any mouth sores!  She was neutropenic again.  Her ANC was 500.  And our biggest concern became her limping and stumbling.

Vincristine has been rough on her.  "Toxic" as the doctors put it.  It makes her hoarse, she gets constipated so we have to keep her on lots of Miralax, and she's been progressively getting a worse "foot drop."  Her right foot is worse than her left.  She can't pick up her foot, so to compensate, she has a "high gate" or in other words, bends her knee more to pick up her foot so she doesn't trip.  Lately, she's been walking on her toes to compensate. 

As a result, and to prevent it from getting worse, they have decreased her dose of Vincristine and are sending us to Physical Therapy once a week for the next 8 weeks.  Today was her first day.  I think she loved it!  It was play time and the therapist was super friendly and cute with her.  I think they will be good friends.  Next week they will give her some heel supports to put in her shoe and we've been given a list of exercises to do at home.  It was encouraging though to hear that this wasn't permanent.  It can be corrected.

So now we are done with "Interim Maintenance!"  Which was not nearly as low-key as I expected.  In fact, it was much, much worse.  And we're on to "Delayed Intensification."  We expect this to be rough too.  We expect her to be neutropenic most of the time, and have been warned to expect a hospital stay at some point for a fever. 

At the end of every phase, I breathe a sigh of relief to know we are done with those challenges!  And then a new set comes.