May 3

Hem  32.3    Plat 254    WBC 3.0    ANC 960

Her ANC was above 750 so we were "go for launch" yesterday.  Second phase of Delayed Intensification.

Monday went very well.  She was without food after 3:30am and remained so until 2:00pm.  My parents came from Anacortes as Peter had to be home working.  They spent the day with Sophia and I spent all day at the hospital with MJ.  She had labs at 9:30am, doctor's visit at 10:30am and her spinal tap was scheduled for 2:40pm.  Ugh.  Awful schedule for a 5 year old.  I told the doctor's "hey, we are here, NPO and ready to go anytime".  Madelyn just does better waiting at the hospital than at the apartment.  We read books, work on her kindergarten workbooks, color, but most importantly there are lots of people to talk to there.  At the apartment there are no distractions and the sofa is directly facing the kitchen.  A constant reminder that she can't eat. 

So I brought some special presents we unwrapped... and we waited.  Luckily we did get in early - at 1:00pm.  We were out of there by 2:00pm.  We both ate (as I was without food too) and then headed to her first swimming lesson at 3:00pm (yay!!! we didn't have to cancel).  The timing was perfect.  The Therapy Pool at Children's has private swimming lessons available. She has the pool to herself (no other kids that might be potentially sick), the instructor to herself and the pool is 93 degrees.  Soooo warm.  She absolutely LOVED it.  It was so fantastic to see her so happy.  No, she was thrilled.

Today, Tuesday, was the long one.  We woke her up at 6:45am.  Cream on her port at 7:00am.  Peter really wanted to spend the day with Madelyn.  He has felt uninvolved with her treatment the last few weeks and has been missing her.  It's hard to get updates on the phone... and then go home to an empty house after work.   So he and Madelyn left for the hospital at 7:45am.  This was HARRRRRD for me.  I texted him continuously today:  

    "How's she doing?"  

    "How's she now?"  

    "What's the treatment schedule"  

    "MJ update?"

    "???"

But I had a very nice morning with Sophia all to myself.  She and I brought lunch for Team MJ at the hospital - complete with cherry topped cupcakes and Dora & Princess balloons.

Since she has to be at the hospital everyday this week, I have organized a little something fun to unwrap each day.  A little present that is an activity to engage in during her infusions.  But what really made today wonderful, for both her and Sophia, was that ASHLEY spent the day with us.  She left Anacortes about 6:15am and arrived at Children's at the same time as Peter and Madelyn.  She was with Madelyn during accessing, hydration and chemo.  MJ seemed so happy when we walked in with lunch.  After lunch Ashley took Sophia back to the apartment and they played, played, played.  Sophia was so happy.  They went to the playgrounds here, danced and painted.  She had a big smile on her face... between the periodic "NOs!" with very serious foot stomp that are so common these days...

Madelyn will remain accessed for the remainder of the week.  She has decided to not get poked everyday.  I think she will be happier about this, but she still doesn't like to have the needle in and the tubes hanging out.  She walks kind of funny and is hunched over, protecting it.

The treatment today was three hours of hydration, followed by the chemo infusion and three more hours of hydration.  The chemo today can damage her bladder so they want to make sure she is peeing... a lot.  She was back at the apartment at about 2:45pm.  Her tummy bothered her, but she still ate dinner well.  She is also started taking a chemotherapy drug orally this evening called Thioguanine.  Tonight I will set my alarm and wake her up for a dose of anti-nausea meds at 1am.  I know it seems crazy, but she wakes up just fine.  I arrouse her, she sits up, takes the cup, takes the pill, swallows, lays back down and says "night, night Mama."  I would prefer my discomfort waking up at 1am to her discomfort in the morning.  Anything I can minimize for her - I will.

Last night Madelyn came downstairs because she couldn't sleep.  She watched me prepping her meds for awhile and then went to sit with Peter on the sofa.  She said to us "I can't stop thinking about dieing. I can't get it out of my head. So I can't sleep."  Then she started banging her head and softly crying.  I thought my heart would crack in two.  It took all my will power to not break down and to not immediately start telling her all the reasons why she shouldn't think that.  I didn't want to preach, I wanted her to feel like she could talk.  I asked her why she was thinking about dieing?  She said she didn't know.  I asked her if it was because of the Leukemia?  Was she scared that the Leukemia might kill her.  She said yes and cried a little harder.  I had NO, absolutely NO, idea that she understood this concept.  That her Leukemia could kill her.  I told her that it was true, that some kids and people do die from Leukemia and cancer, but that she would not.  That our doctors had told us that her body was doing super good work fighting her Leukemia and that the Big Medicines were doing their job.  "You are not going to die, baby.  You are fighting and winning."  She continued to quietly cry.  I told her it was ok to be sad and to be scared.  It's ok to cry.  It feels good.  But that I hoped she knew she would never be alone.  "Daddy and I are always with you.  Our hearts will always be connected."