Life in Seattle

It has been a good week so far.  Hard to believe today is Thursday.  Madelyn and Sophia seem to be slowly adjusting to a new routine.  


Poor Miss Sophia has had a hard two weeks too. While Peter and I were in the hospital with MJ, she was well taken care of by my parents; but she was out of her normal routine and away from us for a long time. She had to say goodbye to us after each visit, had a long drive coming and going,  and was not seeing her Ashley.  Before this all started she was basically potty trained and sleeping in a big girl bed.  Now we are back to diapers and a crib.  Poor thing.  She has felt the effects too.  Today, though, I feel like she is seeming a little more like her happy, lively self again.    


I thought it might be nice for you all to see some pictures of where we are now.  We have an apartment 1 mile from Children's Hospital right next to Magnson Park on Lake Washington.  It is actually quite nice.  The apartment complex is built for University of Washington students with families and has a gym, small park, community center, Montessori school and day care less than 100 steps from our front door.  Peter has had to deal with all of this "stuff."  I just can't handle thinking about finances or logistics.  My brain doesn't seem to work.  Peter found this place and it is perfect.


We have a two bedroom apartment.  The larger bedroom has a study nook and a walk-in closet.  This is the girls' room.  The study nook is Sophia's "room" and the large closet is like a little play room.  Peter and I's room has a bed and a few clothes, but looks more like an office.  We have finally setup our computers here and are starting to speed through projects for clients so Christmas gifts can get to loved ones on time.


Madelyn is feeling, overall, pretty good this week.  We went to the playground today and Magnson Park has a large dog park.  She loved seeing all the dogs.  She just walked right into the middle of them without any fear.  She is starting to feel more of the ramifications of the drugs.  Her belly and checks have swelled considerably and I swear she weighs 10 lbs heavier.  Her walking is still labored and very slow.  She eats every two hours during the day and every four hours at night.  We are up frequently.  Spirits are overall quite good though.  She drew a picture for her doctors today and asked me to help her write out "thank you doctor for taking care of me."  So hard not to cry...


We had a group of U of W / Children's Hospital physiology researchers contact us to be part of a study about the impact of diagnosis and how families cope.  Science is very important to both Peter and I so we said yes.  Madelyn and I were hooked up to electrodes and monitored for two hours today.  We played games in a controlled way and will continue with interviews and questionnaires for the next two years.  The goal is to better help families in the future.


Tonight one of my oldest and dearest friends in the world came with her two sons and most wonderful husband in the world.  They brought us dinner and Jason cleaned my kitchen, dished up all the food and dessert, put away all the left overs and took out all our garbage and recycling.  THANK YOU so much Chris and Jason.  I love you so much.  It is really comforting to know they are close by...

I took this just a couple of days ago.  I can't believe this sweet, brave, 

baby girl of mine has cancer.  She is FOUR years old!  This is just wrong.  

If only I could change places with her...

Children's Hospital has a program called the Beads of Courage.  It provides innovative and supportive care programs for children coping with serious illness.  www.beadsofcourage.net. 

Every time MJ has a certain procedure, treatment, ER visit, etc, she gets a bead.  Her necklace will grown with each hurtle.  Here are a few more things she earns beads for: bone marrow biopsy, chemotherapy, hair loss, sleepovers at the hospital, having her Port accessed, 

Lumbar Punctures, blood transfusions....

Blowing bubbles outside our apartment.  

Hard to believe that this beautiful hair will be gone soon.  We keep talking to her about this and using the words chemotherapy, treatment, blood disease, Leukemia and cancer.  We want these words to be a fact of life and not a source of unease.  MJ and I discussed it and we will both be getting pink wigs soon.

Looking in the gym windows.

Playing in the small park in our apartment complex.

MJ's room.  

Note her Evil Eye (we got this for her in Greece when she was 18 months old) to protect her and the native dream catcher from Grandma Harriet to take away the bad dreams.  

Craft area in the closet with pictures of all her buddies.

The study nook.  Phia's "room."

Grass lawn in front of our apartment.

Ready for Christmas.

MJ and Phia have their own little tree in their room for all their home made ornaments.  Peter was home on Monday-Tuesday and stopped by to see our friends at Bunnies by the Bay.  They sent him home with a whole box full of goodies for the girls.  We placed them all around their tree so they would see them in the morning.  Plus, I had been thinking I needed a robe here in Seattle (late nights and early mornings) and it was delivered to me.  Thank you Bunnies.  I am all snuggled up.  Somehow it is so very, very comforting to have these Bunnies, robes and snuggle blankets from the "hands" of friends in Anacortes...

Having some much needed "clowning around with Daddy time."

We all had fun this night.  "Miss Jeni" (Jennifer Barcott) from San Juan Montessori is living in Seattle now and came to see Madelyn.  It is soooo nice seeing faces from home. We are looking forward to seeing Ashley on Saturday and Keira on Sunday.

Madelyn showing off her new belly and cheeks.