Jan 10, Jan 11, Jan 12

So Monday night I find myself sobbing holding Madelyn while she is screaming and crying.  She does not want me to brush her hair.  I want to brush her hair.  She has the worst matte I’ve seen in a long time. Her hair is so straight it has a matte in it almost every day, but this one is baaaad.  I also think that brushing it will help collect all that hair that is falling out and itching her head.  So there you go.  All my rationale for attempting to brush her hair.  Yet, I can’t seem to get past the “so what” in my head. Who cares if she has a matte in her hair!

It is so hard to define my priorities these days.  What do I need to do?  I need to support Madelyn through treatment.  I need to make sure Madelyn takes her medicine.  I need to make sure we all eat and sleep.  I need to make sure both girls are happy, creating and interested.  But what else?  How do I decide what is important?  I can not figure it out.  I feel seriously stumped and almost motionless.  Life was relatively straight forward before and now it is just … not.

And then... it probably wasn’t a wise choice to try and brush her hair at bed time.  After almost 5 years at this you think I would have that one figured out.  First thing in the morning, while fresh and happy = good time for brushing hair.  Right before bed, when overly tired and superbly cranky = bad time for brushing hair.

The point is, probably all too obviously, I can’t figure out what is important anymore.  Other than Madelyn and Sophia.  Even poor, wonderful Peter is taking a backseat.  I know ...I need to give myself time.  (Sigh).   

One thing I’ve noticed is that Madelyn is asking “what” to everything we say.  Maybe this is an age (almost) five thing, I’m not sure.  She wants to understand everything we say.  Every conversation Peter and I have together, she wants a clear definition about what we are talking about. I am beginning to think she has feelings of worry - more than we realized.  

So her appointment on Tuesday for a lumbar puncture (chemotherapy via spinal tap into central nervous system) went well. She is getting more used to going to the "sleepy room" for the "pokie I can't feel."  Right now her regiment of chemotherapy is via IV, the weekly lumbar punctures and orally every night (we give her this).  Her hair is falling out and making her head very itchy.Her counts are still pretty good:

Hem 33.1  Platlet 334  WBC 3.4  ANC 1292

On Monday, she started having discomfort when walking again (it comes and goes with treatment), but just refused to walk on Tuesday during her appointment. She was in a wheel chair the whole time.  This was concerning to the doctors, not that they haven’t seen it before but just that it is something we need to start addressing with physical therapy right away.  It is neropathy from a particular chemotherapy drug she is receiving, as well as, de-conditioning from the weight gain from the steriods.   Luckily, she was feeling better for her physical therapy appointment on Wednesday so we made it fun. We dressed them both in track suits for the "stretchy doctor" and Madelyn wore her super hero cape and mask.  

Heading into Physical Therapy...

Coloring in the waiting room.

Little evaluation for range of motion change since last appointment. Sophia is saying to Madelyn "you doing ok Madelyn? Not hurting?"

Heading to the gym. They are all three trains. Pulling their horns and saying "choo-choo."

MJ is picking up yarn balls, then jumping on the trampoline while throwing the balls into the basket.

Sophia is following behind copying...

Stair stepping while Sophia is hamin' it up off camera.

BEST part of the day. The girls doctor, Jeanne Olmstead, sent them gift certificates to "shop" at the gift store at the hospital. Oh boy! Did they LOVE this...

Back at the apartment.  

Peter's cousin Christian Kuhnlein lives in Switzerland.  We all had the most wonderful time with his family this summer at Carola's wedding.  He and his wife Claudia have kids the same ages as Phia and MJ.  They sent a wonderful project tub for the girls.  These little pieces look like styrofoam, but are made of corn.  You wet them down and they stick together... the girls made igloos, bracelets, etc.

... and yes... you can stick them anywhere...

"What are you doing Daddy?"

Girls giving Daddy the required tax for a lift upstairs.

“Have I told you lately how wonderful you are?
How the sound of your feet
running from afar
brings dancing rhythms to my day?
How you laugh
and sunshine spills into the room?”   

~  Barack OBama, of Thee I Sing A Letter to My Daughters