Friday, January 25, 2013

8 more days!

 8 more days... 8 more days... 
8 more days!!


coloring Easter eggs at the apartment in Seattle


Still having trouble walking and getting up by herself.  Here she is using the bed to stand up.




playing at the apartment


Easter egg hunt at the apartment.  
Both our parents came down from Anacortes to spend the weekend with us.



Soooo.... we weren't supposed to.... but.... we went home one day.  Just for the day.  What did she want to do?  Go the Gere-A-Deli, her favorite restaurant, eat Chicken Mango Penne and bring them some tulips.



And visit some of her best buddies.  
Here she is with the Rutz' and the Fowlers' watching some chickens.


On the way out of town we stopped by Tulip Town to see 
Grandma Terry who was working there.


Back in Seattle!


MJ had one week that was particularly long and hard.  In preparation for that week she and I had a tatoo henna party;  we prepared the Warrior Princess for battle!



Long days in the infusion chair...


Our best bud Ashley came to visit and spend some time with Sophia.



Lots of fun Physical Therapy.




The therapist was great about involving Sophia.



After that long week of infusions, Madelyn's counts crashed and we were on lock down.  My friends David and Shelly, Uncle David and Auntie Shelly, came to visit and help entertain us.  We couldn't go anywhere until her counts rebounded.  The apartment and the hospital.  That was it.






Thursday, January 24, 2013

9 more days!!

9 more days... 9 more days... 
9 more days...

A few pictures from the months of January - April 2011:




in January we were able to go home for the first time in five weeks.  It was a wonderful feeling to be in Anacortes again.  It was a gorgeous winter day and we went down to our beach, N Ave Beach, and relaxed a bit.



January, February and March we did a lot of driving back in forth.  We were in Seattle for treatments and physical therapy 2-3 days and then home for 4-5 days.
 

yay... home...


Playing in our own back yard again!


Madelyn was able to celebrate her fifth birthday at home with friends and family.  On her actual birthday we had a small party at Grandma Terry and Grandpa Jim's.



Then a few nights later we had a big BASH of a party with all her friends.  The theme was NY Dance Party complete with disc ball!  It was both a birthday party and a "going away" party.  We left on March 31st to live in Seattle full time again for 2 months.  We weren't able to be home for these intense 2 months of chemo called Delayed Intensification.


We tried to always think of activities and things to do when Madelyn was feeling up to it.  We day we bought little cameras for the girls and we spent the day photographing 
the cherry blossoms on UW campus.


Playing at the apartment.



Magnuson Park in on the east side of Seattle was neighboring our apartment building.  We went for a lot of walks there.
 


During April she started doing Physical Therapy in the Therapy Pool and then we started weekly swimming lessons!  It was something fun to look forward to.  We have continued to see Tarrah, her swimming teacher, every time we go to Children's the last two years.


My super hero heading in to see the "Stretchy Doctor" aka Physical Therapist.


Madelyn in Physical Therapy.  Sophia is asking her if she is doing all right.  
"You ok Madelyn?  Is anything hurting?"



Laughing at sis during a physical therapy session.

  


During this time Madelyn started drawing furiously   She continues to even now.  It was a true source of therapy for her and know she just loves it.  It is her way of having quiet time.



Sophia had special days with Mommy and Daddy to get her out of the hospital and the apartment.  We tried to plan times were she got all the attention.  Here she and I went out to lunch and she got a hair cut at a special kids salon near our apartment.


Still having trouble walking... Sophia said she needed a ride too.



Struggling with her port accessing.



Not feelin' good.




Inpatient for monitoring.  She had an allergic reaction to one of her chemo therapies.   This was the last night she would have hair.  In the morning it was almost completely gone.




The next morning.  Only a few patches of hair.  She asked me to shave off the rest.


Here she is saving her hair in a zip lock bag.  Yes, we still have it.




 


Her drawing this day was kind of scary; she just kept repeating the same patterns all day long.  It was because of the morphine... but still it was scary and sad.

 

After that allergic reaction we had to keep her on three types of allergy medicines for two weeks.  Basically medicine every 4-6 hours even through the middle of the night.  Madelyn was great though.  Waking up, swallowing her pills and then going right back to sleep.




How I kept track of it all.