Interim Maintenance (starting phase 3)

Today I saw a glimpse into our future as a little boy probably around 7 years old walked into the clinic waiting room not long after we arrived.  His head bald and his face moon shaped like our little Gracie's her first month on steroids, he was somewhat grumpy and seemed to just not feel good (which i'm sure was the case).  I fought back the few tears that were attempting to come as I realized this would be us in another 8 weeks.  It was somewhat of a rude awakening after the most "normal" weekend we have experienced together as a family in a few months.  

I'll start with our clinic update and backtrack to our fabulous weekend! Yesterday she finished consolidation (her 2nd phase of tx) and today was her first day of interim maintence which lasts for 8 weeks.  They say it's "kind of a break" so we better enjoy our break right?  She only goes in every 10 days this phase and only has one sedation (spinal tap) on day 31 which means we have no sedations the whole month of July!!  YAY!  And...to top it all off, can you believe NO oral medications (except as needed like zofran) for the whole 8 weeks.  No one in this household will have to crush a single pill for 8 weeks.  And our sweet Gracie won't have to deal with the side effects of the steroid or go without eating in the evening for 2 hours before we give it to her and 1 hour after.  It will be nice to not have to wake her up as we often had to because she would be hungry before bed so we would half wake her 2 hours later to give it to her and put her back to bed.   
Clinic stats for today!

Weight: 31 lbs

WBC: 5.7

Hemoglobin: 11.7

ANC: 3,000 (she has to be at 750 to move forward with tx from now on)

Platelets: 554,000 (probably double what mine are!

Her levels looked great and so did her bilirubin and liver enzymes which all have to look good enough in order for her to get one of the chemo's she started getting today (IV methotrexate).  I thought the methotrexate looked like slime it was a greenish color (the nurse calls it mountain dew).  She gets IV zofran before they give it to her because it can cause nausea and some kids vomit while they are getting it.  Luckily she didn't and still hasn't.  Although around the time her dose of zofran should have been wearing off she was gagging like crazy on the cottage cheese she was having before bed, so I'm guessing she was feeling nauseous and gave her another dose before bed.  The actual drips are quick about 5 minutes each so only about 15 minutes plus flushing...but we left home at 9:00 and didn't get home until 2:00 because we do a lot of waiting.  We wait to get called back (esp the day after a holiday they're usually super booked trying to fit two days into one), then they take her vitals and we wait for the nurse to come access her port (which she still hates-it's the one thing I really don't like about clinic right now) and draw her blood.  Then we get her counts and they send another sample down to have her liver levels tested which usually takes about an hour.  Then we see the Dr...thankfully Gracie is warming up to her, she wanted her to hold her again today and usually doesn't even flinch when she listens to her and checks her ears -she says she's the ear whisperer I guess she must be whatever she's doing is working.  Then the Dr has to get the levels and approve her for the chemo before they order it from the pharmacy and Gracie got the zofran while they waited for the chemo to get sent up...then we finally got the methotrexate and vincristine. 

They had to deaccess her port for the first time today while she wasn't sedated...and she hated it just like getting accessed.  But it's hard to blame her, we have to hold her arms down while she's laying on a table because it's so high up and we don't want her touching the area after they clean it.  I'm pretty sure I would hate anything that required people holding me down.  Hopefully she'll adjust like she has to the vitals.  They say she does really well, I only have her to compare it to so I'm sure some toddlers do much worse.  But, I think anything seems bad to a Mom when their child is screaming helplessly while you are holding their arms down and they're being poked or having tape ripped off.  Now if we can get her sweating to stop while she screams so they don't keep putting more and more dressings on to keep it in place. 

So you may be wondering what does one do with a toddler for 4 hours at clinic?  A lot!  Today we walked the halls many many times and of course she had to stop and peek in every single open door to try to make friends with all the other kids (many of them quite a bit older than her).  I pushed her around in the cop car they have and played in the playroom with cars and puzzles and colored and played with balls.  Then we walked around again and got back in the car and she backed into all the other toys all on her own!  I fed her some lunch and we played on the computer in the waiting room and she rocked on the boat again..and of course enjoyed a good dose of elmo while she was getting her chemo.  Here are some pictures from today!

The favorite computer in the waiting room.  She patiently waited and rocked in the boat in until the two boys playing there got called back.

Waiting for the nurse.

EXHAUSTED after a day in clinic, she fell asleep not long after we started home.