May 26 / Delayed Intensification is done.

Well!!!  Super, fabulous, awesome news today.  Her labs showed a continued upward climb in counts:


Hem 27.9    Plat 189    WBC 1.7    ANC 683


Still low, but the trend is up, up, up!!  The doctors are confident that she will begin Long Term Maintenance on time.  Again, MJs ANC needs to be above 750 to start on time (Tues May 31).  She has five days to get there.


The other super, fabulous, awesome news was that we were allowed to GO HOME!!!!!  We heard this news at 10:30am.  Madelyn went to swimming lessons at 11:00am.  We were on the road, after lunch, by 12:30pm.  We were BOTH so excited to JUST GET HOME!!!  I will organize better for the change to living in Anacortes and visiting Seattle next week.  For now, I just want to be home. 


When we drove into town I asked Madelyn what she wanted to do first.  No hesitation in response; we drove straight to San Juan Montessori.  No stop at the house.  No stop to see Daddy at the studio.  No passing Go.  Just to see her friends.  She has missed Alaina, Keira, school, Miss Tina and the regular social interaction more than I will probably even ever know.  When we drove up she said "Mommy, maybe it's circle time!"  So much joy in her face.  She walked in with her beautiful bald, butterfly covered, head and just plopped in Miss Tina's lap.  Next she took her place in The Circle.  She looked so utterly joyful.  It swelled my heart and broke it at the same time.  I just left her there.  She doesn't need this ol' mom clogging up her social chi.  She didn't need me.  It was awesome.


I walked to the studio and picked up my husband.  I went for a walk with my Peter.  CONCEPT.  Ahhhh....


She also requested dinner at Grandma and Grandpa's with some hot tub time.  Mom asked me what Madelyn wanted to eat.  Never indecisive, MJ requested spaghetti with meat sauce and corn on the cobb.  And that is what she had.


I AM SO HAPPY TO BE HOME.  I am so thankful for this place.  I love my house; even with it's 78% finished remodeled rooms, no insulation and seventies linoleum.  I love my studio.  I love my work.  I love my friends.  I love my family.  I love my husband.  I love my kids.  Anacortes is our home.  I am so overjoyed to be home.

Tues May 24

Madelyn had labs yesterday and.... hoorrrrrray!!!.... still no transfusion.  Numbers are going up!  


Hem 25.4    Plat 123    WBC 1.5    ANC 585


These numbers are still low, but the upward trend is encouraging.  Her ANC has to be at 750 to start Long Term Maintenance on May 31.  With a week to get there from 585 I'm pretty confident that she will begin on time.  HOME HERE WE COME!


Madelyn continues to be in fantastic spirits and has tons of energy.  She is eating well, but not drinking great.  I even resorted to buying her an Izzy Soda Pop today, but it was still dismissed.  Ashley came to visit yesterday after the hospital and brought the girls a mini-donut. MJ ate the whole thing! For most kids, not unusual, but for Madelyn this was huge.  I know it's crazy, but I was super excited she ate a donut.  Sitting at our dinner table you might hear:  "Madelyn, you can have more asparagus after you eat three more bites of bread."


She has labs again on Thursday.  So more soon...

May 19

We went in this morning for another CBC and while she is still very low, her Hematacrit actually went up a little.  So again, no transfusion.  Yay!!!  She has some mild symptoms of low red-blood cells, but nothing major.  A little tired, a little pale and a little dizzy.  But she still ran all over the yard when we returned from the hospital today.  She still played "game" with Sophia (this is where they are each an animal and they talk to each other) and still had a big fight with her over how to cut the grass with scissors.  So the nurse de-accessed her port and we will go in for another check on Monday and Thursday next week.   


We also had a doctor's visit today.  Th doctor was amazed that I didn't give MJ any pain or nausea meds last week during her ARAC chemo.  She received a dose before the infusions each day, but she did not need anything other than that!  She ate well and was in great spirits both this week and last week.  She has even started to drink milk again and is not obsessed with corn anymore.  Those were the only two main changes we saw in her eating habits the last few months.


This week and next week are scheduled chemo rest weeks with the goal for her counts to rebound.  May 31 will be her first day of Long Term Maintenance.  To start on time, her ANC will need to be 750 - currently she is at 200.  If she starts on May 31 - we can go home June 1, 2 or 3!!!!!!  We all can't WAIT to be home.  Madelyn has been drawing houses constantly the last couple of weeks.  I guess she is telling us something.


We spent most of the afternoon yesterday at Magnuson Park.  It was a beautiful day.  A couple of young girls spread out their blanket close to us and Madelyn inched her way away from us and towards them.  Madelyn just loves talking to people.  Eventually she was sitting on their blanket conversing and laughing.  Peter and I tried not to interfere until she was firmly established in their sphere.  It's such a marvelous skill she has with people and a joy to watch.   She is not bashful or reluctant.  She is sure of herself and generally un-phased by others.


Especially now, she has grown-ups and children stare at her.  Sometimes I want to scream "Yes, she's bald!  Yes, she has cancer.  Go about your business people."  But only on my bad or exhausting days.  I know most of those people are looking at her and thinking "poor sweet honey."  It's good for strangers hearts to be squeezed and reminded of bigger adversities.  


Madelyn has had kids come up to her and say "how come you have no hair."  Her response is.  "Ya, because I have Leukemia.  The medicine makes my hair fall out.  But it will grow back.  I think it will be dark like my Daddy's and curly like my Mommy's when it comes back."  It's all very matter-of-fact and calm.  She just loves that someone has come over and talked to her.  Timid, ashamed or reserved are NOT words I would EVER use to describe MJ.  She is the complete opposite of those words.  She is determined, opinionated, self-assured and not afraid.  She is not afraid to scream or laugh or ask questions. 


Peter and I laugh because our doctors and nurses always ask us how Madelyn likes things to be done.  We also respond:  "Ask her."  Because let me tell you, she will be sure and tell ya.  And I love that.  Yesterday she decided she wanted to take the tagaderm (the big sticky thing that keeps the needle in place and protected) off her port all by herself.  Luckily at Children's the nurses are wonderful and patient.  It took about 10 minutes longer but who cares.  You go Miss MJ.  

May 18

Quick update.  Hematacrit still on the downward slide.  She was at 22.8 today;  21 is the transfusion point.  MJ decided she would like to stay accessed today.  We go in again tomorrow for a CBC.  I assume we'll be going in daily for checks when she is this low until she needs a transfusion or starts to climb back up.  More tomorrow...

May 17

Well… we continue with lock down – i.e. not going anywhere – but we also had a visit from Uncle David in NYC.  He arrived on Thursday night and left Monday afternoon.  It was soooo fun to have him here.  Peter was home working all week and weekend so it was great to have someone here with me.  He is fantastic with the girls and they looooove him.  MJ calls him Funny Uncle David.  When he went to the hospital with us, Madelyn said to several nurses:  “This is my Uncle David.  He’s funny.”  David is one of my oldest, most loved friends and he visits us in Anacortes every year.  We’ve been making fun of each other for over 15 years now and it was a good distraction from my constantly worried brain.

Friday was our LAST DAY of Delayed Intensification!!!!!!!!!!!!!!!!!!  Oh ya!  Let’s party.  Uh huh!  Wooohoooo!!!  Madelyn has been practically side effect free.  Last week I did not have to give pain meds or anti-nausea meds even once!  Her main difficulties have been a bladder infection (totally cleared up in 2 days and she just finished her 7 days of antibiotics) and low counts.  The low counts are to be expected, very typical.  We had a blood transfusion scheduled for Saturday, but her counts were ok on Friday and it was canceled.  We went in for a CBC again today and her numbers are still on a downward trend.  The doctors are telling us to expect this for 7-10 days following the ARA-C chemo she received on Friday.  Her counts today were:

Hem 23.7    Plat 114    WBC 1.0    ANC 340

Her threshold is 21%.  If her Hematocrit (red blood cells) gets to 21 we will transfuse.  The doctors think this will most likely be necessary.  We go in for another CBC tomorrow, Wednesday.  Thursday we have another CBC scheduled, Physical Therapy, a doctor’s exam/visit and most likely a transfusion. 

Her ANC is still incredibly low.  So we continue with lock down; we are not going anywhere.  This is haaaaard for all of us.  We are a busy, traveling, moving family.  We never sit still.  My girls are very social beings, like me.  They love to meet new people, see new places, experience new things.  We have never been a stay at home family.  I love it when we go out and the girls start their own conversation with people… telling them their stories, asking people questions, being very direct, honest and curious.  Madelyn’s famous line is “Did you know…. “ and then some Madelyn fact-oid.  She completely fills up a room with her personality, dominance and sincerity. 

We are driving each other crazy.  She already knows me and how I work.  She needs new people and friends.  I hope, hope, hope this won’t last much longer.  Again, it was great for her to have Uncle David here.

So in summary, we are done with Delayed Intensification, or the “Hard Part” as we describe it to Madelyn.  We are now waiting for her counts to recover or rebound from this intense chemo time.  We have two weeks for this to happen for her to stay on schedule.  Her first (HOORAY!!!!) day of Long Term Maintenance is scheduled to start on May 31.  This is the phase of therapy that will last for two whole, long, years, but will be relatively easier.  It will include only monthly visits to Children’s Hospital rather than weekly.  I also hope, hope, hope that we will start this on time.  If her numbers rebound then WE CAN GO HOME!!!!  We are all so anxious to return home.  I desperately need a return to work, my home and a normal day. This limbo world is not for me.  My brain feels constantly fuzzy, worried and unable to make decisions.   I am a decision maker.  This cancer mind consumption is not good for me.

Heading out of hospital with bucket of miscellaneous neccessities: wand, horse, a rock, a ball, necklace, pad of paper and pen.

Playing with her new IPad.

Heading off to the hospital...

Sitting in infusion room with Uncle David.

LAST DAY OF DELAYED INTENSIFICATION!!!  Dance Party and BBQ with David, Sophia and my parents.

Snack of Pirate Booty.

Showing off her moves while singing to the music...

Serious move here...

Luxurious accommodation at the Kuhnlein Apartment.  The girls and I tromped downstairs every morning wayyyy before David was ready to open his eyes.  Our oh-so-fabulous blowup mattress basically fills the whole living room.  The three of us sat on the couch staring at him each morning while I drank my coffee and the girls watched their morning cartoon.

David and I's friend Shelly joined us on Saturday.  Here the girls have picked a huge bunch of flowers, then handed them off to Shelly and took off.

Walking in Magnuson Park right next to our apartment complex.

Picnic!  Photo by Shelly :)

Last Two Weeks... In Images

I have been photographing a lot.  More personal photography than I have done in years.  That has felt good.  Here are just a few...

WEEK OF APRIL 25

On Thursday of this week we surprised Madelyn with a quick trip home.  It was unsanctioned by our Oncologist so we called it our "sneak home" visit.  About every couple of days now she asks "Mommy, when can we sneak home again?"

Madelyn's school, San Juan Montessori, goes to Causland Park every day.  We pulled into town in the middle of this outing.  We stopped by for a hello.  Here MJ is taking with her teacher, Miss Tina, and a couple friends.

Next thing on Madelyn's self detailed agenda, Gere-A-Deli for her Chicken Mango Penne.  We had a lot of tulips blooming in our yard.  I let the girls just pick, pick, pick to their hearts content as we weren't going to be there to enjoy them anyway.  She brought a boutique of flowers for the Gere-A-Deli gang.

Soooo happy...

A trip home would not be complete without a visit with Madelyn's best buds.  We visited the Rutz' clan and the Triple A's (Amber, Alaina and Avi Fowler) met us there.  We also were able to get together with the Harrington's.  Here Madelyn is playing with Amalie Rutz.

The kids all checking out the chicken coop / swing set in the Rutz' backyard.

Luke and Mathew Rutz know a lot about chickens.  I was impressed.

On the way back to Seattle, we stopped at Tulip Town to say hi to Grandma Terry (who was working there) and see the tulip fields.  Sophia drove to Seattle in her underwear.  She was totally muddy from the knees down.

Madelyn and Grandma Terry, my Mom.

Sophia had to be convinced to get in the picture.  She allowed this positioning... only.

Sisters having a serious chat back at the apartment.

We have been seeing a lot of my sister Jen and her two handsome devils, Soren and Wyatt.  It is nice having them so close.  Here we took the kids to the beach... but, ya, not such a fun idea after all.  FREEZING... we ended up having our picnic in the middle of Jen's living room on a big blanket.

Wyatt.

Soren.

These boys are a serious riot; but so is their mother so they come by it naturally.  Wyatt loves to talk about 2 inches from your face.  He wants to make sure you are listening.  It's hilarious.

Beautiful day playing outside the apartment.

Sophia absolutely insisted that we fix the sidewalk-chalk bunny.  She went into the apartment got the tape and handed them to me.  I told her that it wasn't going to work, but she was persistent.  As all Mom's know, some things, even if illogical, are not worth the battle.  Once I had taped it she said "see!  fixed!"  She was a happy little bunny.  I realized I was the one that needed to redefine what "fixed" meant.

Madelyn is still drawing a lot.  Often the same scene or object over and over again.  The pictures sometimes incude an M (for Madelyn) and sometimes a MSPL (for Madelyn, Sophia, Peter, Lisa) and sometimes a MA (for Madelyn and Alaina).

Sophia post MAJOR fall, head first, down the cement stairs outside.  I wonder if the shoes on the wrong feet had anything to do with it...

WEEK OF MAY 2nd

This was our first week of daily hospital visits for chemo.  Prior to this, we had never been every single day.  This is one of the reasons it is hard on MJ.  So far her side effects have been tolerable, but going to the hospital every day is no fun.  Staying accessed all week is no fun.  She has been scared and worried, on and off, all week.  I feel the same way.

So Madelyn and I had a henna party Sunday (the night before the big week started).  After Sophia went to bed, the two of us sat down with the henna tatoos and decorated ourselves as warrior princesses for the big, long, hard week.  We talked about her appointments, the sleepy room visit, about leaving her "pokey in" and how she felt.  The tatoos caused quite a stir wherever she went in the hospital.  She loved the attention.  I got a lot of strange looks.

I tried to make the week fun with special little gifts, activities and food.  Sophia and I brought MJ these Happy Birthday balloons.  Well, let me be sure and clarify here....  The Dora balloon is Sophia's and the Princess balloon is Madelyn's.  Don't get it mixed up or Sophia will set you straight.  Ya, I know, it's not their birthday's but who cares.     

Sitting together "reading."  This day Madelyn had six hours of fluids and a chemo infusion. 

Ashley came and spent this long hospital day with us.  She was with Peter and Madelyn at the hospital in the morning and took Sophia for some fun in the afternoon while I did the grocery shopping. 

Eating some fun cupcakes I brought.

 She has been in amazing spirits all last week and this week.  It is remarkable.  Here she is giggling at Daddy and sister while playing outside at University Village... while I, yet again, went to the grocery store.  The one down side to having an ultra veggie eater is you constantly need more vegetables.  I am NOT complaining.

Another one of those beautiful days.  Outside having a picnic.  The balloons were an important accoutrement ala MJ and Phia.

Physical Therapy on Wednesday.  She did great being accessed and still doing her exercises.  Here she is on a stair stepper while at the same time shooting hoops with yarn balls.  

MJ's cheerleader.

She loves this... wacking a big ball and seeing in what crazy direction it will fly.  She is constantly giggling while playing baseball.