March 2nd

Just Madelyn and I drove to Seattle yesterday afternoon.  We picked up noodles for dinner at Boom Noodle (her favorite), played ponies and watched The Princess Protection Program.  Yup, that's right, the PPP. 

I woke her up about 6:45am this morning to get ready to go.  (I only have to wake her up on appointment days.  When we are home with nothing going on I am usually woken up at around 5:30am).  Dressed, numbing cream on and out the door at 7:20am.  The routine is Starbucks.  First.  Thing.  She has no problem with this.  She understands me.  Today, she picked out a special treat to eat once she woke up from "The Sleepy Room."  Sweet Potato chips.  Good choice I thought.  And even with chips, Madelyn is still the gourmet.

Whenever we go to the hospital we put Madelyn in a button-up shirt.  She asked me today why there was a hole in the shirt at the cuffs.  Do tell, why is that?  I told her I was not sure.  She told me that Grandma Terry could fix it.  Grandma Terry can make anything happen.  I think, after all this is done, and probably for the rest of her life, she will not like button up shirts.  I tried to put one on her the other day when we were home in Anacortes and she started crying.  When I asked her why she was crying she was angry and said "you didn't tell me I had to get a pokey today!!"  We absolutely did NOT put that shirt on that day.

Her counts were good today, so she was wammed with chemo.  She had methotrexate via spinal tap (she was asleep for this), then methotrexate and vincristine in her IV (port) and extra fluids.

Hem 36.4  Plat  241  WBC 3.4  ANC 1044

I accidentally gave Madelyn some gum right before her anesthesia.  Ugh.  Can't BELIEVE I did that!  So we had to wait an extra hour before  receiving the spinal tap.  Poor thing... but she was, is, always is a trooper.  "Well, we can read more books Mommy - that's good." Luckily, she is not taking steroids right now.  If she had been, it would have been an extremely traumatic hour.  (Originally, our doctor said that the only opening they had for another spinal tap was at 2pm - a 4 hour wait - but they would try to sneak us in.  And they did.  An hour later, we were in, thank goodness.  The Oncology staff at Children's is simply rad).

Peter and I have decided that as much "at home" time she can have right now the better.  So, as Madelyn was feeling good after the appointment, we busted it home!  We were back in Anacortes about 2:00pm today!  

With her increased dosing of methotrexate we are seeing some nausea now.  The prescribed Zofran works well though and we usually need to give her about two doses following her appointments.  She is also having some pain from the Vincristine.  I noticed a slight out turning of her left foot, floppiness in her footing and uneasy walking today.  This is normal and what she had trouble with in December. This neropathy and general de-conditioning from the steroids are why she has been going to Physical Therapy.

As I was waiting for Madelyn to finish her procedure today and wake up from the anesthesia, I got word that a friend and fellow photographer passed away from cancer yesterday.  I had an overwhelming numbing feeling throughout my body and was unable to focus for quite sometime.  Dick was diagnosed five weeks ago and is now gone from our world.  Much love going out to you tonight Mrs. Garvey...