Mar 28 / day 1 of Delayed Intensification

Phew.  It was a busy week.  Organizing the studio to leave, trying to get Kimee up to speed on KP Studios, preparing for Madelyn's birthday bash and packing.  Actually, to be truthful, we spent all week trying to get loose ends tied up at KP Studios and working with Kimee.  On Saturday, the DAY of Madelyn's party, is when I actually prepared for the party and on Sunday, the DAY we left, I cleaned the studio from the party, cleaned the house, did four loads of laundry and packed to leave.  It was a crazy weekend.


Madelyn had a wonderful birthday/bon voyage party!  We had a dance party with tattoo and piercing station (needle free), disco ball, a "bar" with wine (sparking cider) and cocktails (punch) and lots of giggling, dancing, presents, cake and silliness.  All my sisters came with "the cousin pack" (except Lucas who made the Babe Ruth Majors at 9 years old and had practice) and all of MJs good buddies were there.  The four best friends - Madelyn and Phia and Avi and Alaina Fowler - had matching bright (and I mean bright) pink tutu dresses.  Phia said they were all Fancy Nancy.  


Madelyn was so happy.  Peter and I were, therefore, so happy.  She didn't go to bed until 9:30pm that night and was tear free until the end.  Her cousins Courtney and Kelsey had a sleep over and she fell asleep with a big ol' smile on her face.Thank you - all you fabulous, fantastic, much loved family and friends - you made this night  pure awesome-ness for MJ.  She was telling all the doctors and nurses about it today... between Dora episodes.


So we arrived in Seattle late (by 5 and 2 year old standards) last night at 7pm.  Girls went straight to bed and I unpacked most of the things.  We already had the apartment stocked with necessities, but the girls both went through a growth spurt one day (seriously) and we had to bring all new clothes for them.  We also needed some beefing up on miscellaneous supplies.  For example, we neeeeeded to bring horse-ies.  We could not get through the next two months in Seattle without our horse supply and the new stable from Grandma Harriet and Grandpa Urs.  And then, of course, there is the rock climbing gear for Peter to go to Stone Gardens.  And I am working on a project using encaustic on my personal photographs so heat guns, wax, photos, etc had to be packed.  So you see, lots of important packing :)  Had to put the Thule rack on the top of the station wagon...


So here we are in Seattle for two months.  Hard to believe.  When I climbed in the car yesterday I sooooo did not want to go.  Each time I arrive in our little apartment though I realize that home is wherever we are, together.  I feel happy and at home here - because Peter, Madelyn and Sophia are here.  Certainly, I would prefer to be in Anacortes in our real home, with our peeps and family close by, with our studio, with our routines, our Ashley, our tulips, our kitty, our beach, etc, etc.  But the three loves-of-my-life are here with me and that makes it feel right.


Sometimes I think we are crazy - all four of us going to Madelyn's appointments together.  Today we were at the hospital from 9am until 2pm.  It just feels right to Peter and I; that we go through this as a family.  MJ is bearing the brunt of the physical and mental stress, Peter and I are sleepless and anxious and worried and Phia talks about things like medicines, chemo and hospitals, but it feels right to all be together.


Day 1 of Delayed Intensification actually went well.  Madelyn's counts were relatively good, ANC is low but high enough to start this part of therapy on time.  The doctor's said the ANC was probably lower because of the virus she had a couple weeks ago.  Chemo knocks her counts down and she will be getting a lot of it over the next two months.  So it would have been better for her if she had started higher.  She is under 1,000 so no public (fun) places like aquarium and Pacific Science Center unless they climb back up.


Hem 38.4    Plat 291    WBC 3.0    ANC 807


She started a new, typically more difficult, chemotherapy drug today called Doxorubicin. She also had the Vincristine (the one that causes the neropathy in her legs).  They pre-dosed her with Zofran (anti-nausea med) and gave her some fluids via IV.  The clinic was super busy today so all our appointments ran late.  We didn't get back to the apartment until 2pm.  Madelyn felt great the whole rest of the day and evening.  She was just a little... spacey.  She ran around the lawn in front of the apartments, climbed trees with Daddy and swung on the swing set here at the apartment complex.  She had a little pee accident while climbing a tree due to the extra fluid and because she was having so much fun. 


I made a grocery run with my bike and our kid-trailer on the Burke Gilman trail.  Nice to get a little exercise in after all that sitting today.  We had a great dinner as a family tonight.  The girls favorite spices are Indian, so I made tandori chicken with yogurt and rice with a Swiss chard and celery side dish.  


Madelyn also started, the dreaded, Dexamethazone tonight.  Steroids.  Read: cranky, irritable, HUNGRY 24/7 and insomnia.  Luckily she only has to be on it for seven days this time (in December it was for a whole month!) and then off for two weeks.  Then on again, etc.  It will hopefully be easier this time.... our fingers are double crossed.


Overall Delayed Intensification will be her hardest round of treatment and the doctors say Anacortes is too far away.  So we are here, in Seattle, for April and May.  One of us will be returning to Anacortes weekly for work and Kimee will be helping immensely keeping KP Studios on the go.


Madelyn will have another big chemo day this Thursday.  She will receive chemotherapy to destroy leukemia cells that could spread to the central nervous system (the brain and spinal cord). This chemotherapy is injected right into the spinal fluid using a lumbar puncture (spinal tap).  She has had many of these and will, again, be sedated.  They have organized it so that, while sedated, she will also receive chemotherapy injected into her leg muscles.  She was supposed to have that done today, but they said for her comfort they would move these big shots to Thursday so she could be asleep.    


Friday she has physical therapy and then on Saturday we are meeting with the Deborah Nelson.  She is running in the Paris Marathon on April 10 in honor of Madelyn and in memory of my Grandmother who passed away from Leukemia in June.  She and her teammates are members of The Leukemia & Lymphoma Society.  My Mom will be coming with us.


So, a busy week.  Lots more posts to come...