May 22

The Kuhnlein family has had a busy last few days!  Busy with happy, beautiful, sparkly, tiara, tutu-liciousness, cutiness.  

Peter, Madelyn, Sophia and I all setup for our annual Fidalgo Dance Works photo shoot on Friday evening.  The girls twirled ribbons, danced with wands and strutted their stuff in front of mirrored dancing halls while Peter and I setup backgrounds, taped down paper and setup strobes.  Saturday morning we dressed Sophia in her dance outfit and arrived at Fidalgo Dance Works at 8:45am.  Grandma Terry met us there.  Then tutu-chaos ensued.  Same scenario Sunday morning for Madelyn's dance photos and Grandma Harriet and Grandpa Urs were there to help and then usher the girls off to their house.  Peter and I photographed almost 300 cuties Saturday and Sunday for our local dance school.  We always enjoy spending time with these great teachers and adorable children.  

Sunday evening I excused myself a little early from the photo shoot and left Peter with the mothers, dancers and sequence.  I packed up the girls, got some food and hit the road for Seattle.  We arrived at my friend Shelly's house - aka Auntie Shelly - at about 8pm.  Sophia was conked out but Madelyn was ready to rock it.  (She had slept from 1:30pm - 5pm that afternoon on account of spending all day Saturday at the beach with her older cousins Lucas and Beckett.  She was Exhausted.  Please note the capital E).  Madelyn watched a special movie about the Loch Ness monster fable and Shelly and I hooted and hollered over some beautiful red wine.  (Yes, hooting and hollering is a good description for Lisa + wine).

It was an interesting night of "sleeping" with both girls and me in one bed.  3 am found me sleeping perpendicularly across the bottom of the bed as both girls lavishly slept spread eagle at the head of the bed.  We all awoke at 6am thanks to the dreadful, hateful, mean machine the alarm clock.  So (sigh) up and brush and deodorize and rush for a long day of waiting.

We waited through rush hour to arrive at Seattle Children's just on time. We waited for Madelyn's port to be accessed.  We waited for our doctor's appointment.  STARBUCKS.  We waited for Madelyn to be called for her spinal tap (no food in the morning is always extra fun).  Then Sophia needed to be RUSHED to the toilet.  We waited for Madelyn to come into recovery.  We waited for Madelyn to stop being dazed and confused - poor thing.  She was very discombobulated and cried for 40 minutes.  Then she had a bolis of fluids to help with headaches.  Yup, more waiting watching the fluid drip... drip... drip... Then we went to lunch. Including another RUSH to the toilet.  We waited at the pharmacy for medications not ready and prescriptions missed.  Then off to something finally fun for the girls!  Swimming.  The girls teacher was starting to get a little sick so we skipped lessons and just splashed around for an hour.  Last stop?  Another pharmacy run to get at least one last prescription they forgot.  The last two I will have to arrange to get filled here in Anacortes.

Due to the long weekend photo shoot at Fidalgo Dance Works Peter had to stay behind to finish the shoot and dismantle our backgrounds and gear at the dance studio.  My friend Shelly took a day off work to help me at the hospital - approximately 7:45am - 3:00pm.  It's always a long one.  I thought maybe Shelly would go to work after the appointments, but I could tell she was exhausted.  She told me today that she went home and drank wine and cried all night.  Which somehow made me feel a little better.  Maybe I'm not crazy after all!  Sometimes I feel like people listen to me or read what I have to say and think I am dramatizing.  After all, Madelyn is doing well right?  Look at her.  She is laughing and exuding heath... at least three weeks out of the month.  

It's one thing to read about sick kids or see videos about what they are going through.  It is a whole other thing to watch these kids at the Hem/Onc clinic.  And I see them.  I hear their cries and screams as they are poked, prodded and hurt.  I watch them unable to walk.  I see them giggle and move around attached to feeding tubes and IV poles.  I see them carrying their puke buckets.  I see them expand into little round apples or whither away from toxic drugs being pumped into their bodies.  All this to save their lives. Madelyn was there not so long ago and the reminders of her fragility are there.  She is doing well yes.  But she still has nausea, pain, heart burn, constipation, trouble with neuropathy and is taking chemotherapy every single day.  I am so sick of wondering, worrying and waiting.  Relapse is like a dark shadow following me around.  Knowing that it was hard for Shelly to see all this for one day is somehow comforting. 

I spoke to my doctor recently about my impatientience with the irrelevant, my easily agitated startle response and my inability to make real decisions.  I seem to only be able to deal with the now and extinguishing my life's little fires.  My doc and I decided two things.  I will increase depression medications for awhile and I will disconnect myself from some of my Leukemia support groups.  I have also made some decisions for me.  I decided to not feel guilty about our extremely long vacation next month.  I decided to ask for an exorbitantly large birthday present - which I am writing to you on.  And I booked an art photography workshop for myself sans kiddos and hubby.  Amen.

So listen to this... drum roll... no seriously...This week I have read a book of fiction.  I am on chapter 3!!!  I have not been able to read a book of fiction since Madelyn was diagnosed.  I've been reading about cancer (surprise there), writing, art, photography, parenting, cooking, wine... but anything requiring a suspension of disbelief...  Nope.  Haven't been able to get past page 15.  I am on chapter 3!!  

Madelyn's ANC was still running a little high even after last months chemo increase.

Hem 36.2    WBC 2.7    Plat 250    ANC 1863

So another chemo increase this month with a CBC check in two weeks to see how she is responding.  The doctor also increased her Gabapentin - the medication that is helping her feet and ankle neuropathy.  It seemed to help for awhile, but she was still having episodes of pain and difficulty running last month.

We are on day 3 now of steroids and it has been a good week.  Not too much emotional turmoil, only one day of crying as she went into school and she - sorry - has been pooping!  Yay for early Miralax dosing...  She even went to her baseball game on Tuesday night and could you  tell that my girl had just had a spinal tap to put chemotherapy in her central nervous system? An infusion of chemotherapy into her blood stream?  Nope.  Go Eagles!


A piece of big news.  A asked Madelyn's Oncologist when she would be done with therapy.  She game me an exact date!  January 31st 2013 we are going to be doing some major celebrating some where, somehow.  

Here are some pictures of Madelyn and Sophia from this weekend photography shoot at Fidalgo Dance Works:

Madelyn with her best bud Alaina Fowler.

Ummmm.  Ya.  So freaking adorable.  

This girl, Miss Alaina, has been MJ's best girl for years now.  Didn't make one difference to Alaina whether Madelyn was in the hospital, not feeling so good, bald or cranky.  Confusing, yes, but all Alaina wanted was her friend to play with.  Alaina has stuck by Madelyn and Madelyn by Alaina. I will treasure this picture forever.