June 30

Madelyn had a CBC (complete blood count) and a doctor's visit on Tuesday.  And she is just awesome.   Normal hematacrit, normal platelets and white blood cells are on the rise.  Her ANC is 1200!  Awesome for getting on an airplane... tomorrow!  


I can't believe the trip is here.  I am excited to spend a few weeks with my family with no agenda's, no timelines. I guess I should get home and pack.  All we need though is passports, medicine and each other.  If we forget anything else, well, we can get it there.


She is responding well so far to the new chemo regiment.  The first day after her oral methotrexate she was very cranky.  The second time, she was fine.  The 6MP chemo we give her every night (and will every night for the next two years) hasn't given her any troubles either.  


She has been bursting with energy.  While in Seattle Tuesday, she had a swimming lesson, she had her toes and nails painted and we went out to dinner with my friend Shelly.  It's amazing that we will be giving up the apartment in two months.  When we signed that lease back in November, 9 months seemed a long way down a very hard long, path.  Reaching the end didn't seem possible.  But here we are.  Starting around September we will only need to be at the hospital once a month!


Peter and I even took a few days to ourselves - two nights, three days in Victoria, BC.  This is the place we met in photography school and will always be a special place for us.  We rode our bikes on the Lockside Trail from Sidney, BC to Victoria.  It felt so good to move.  I feel like I have been sitting in vigil for the last six months.  I loved being totally exhausted from exercise.  It was especially nice to sit at the bar with my husband and have a long, leisurely three hour dinner - WITH scotch and prosecco for dessert.


I'm bringing the camera (well of course) and computer to Europe... so I hope to upload some images from the road...  more soon...

My Metaphors...

Cancer effects everyone.  I don’t know anyone who has not been effected by this disease.  As wrong and painful as this journey is, at whatever level you are effected by it, we find a way to cope.  We deal.  We adjust.  To cope means to deal, with some measure of success, with the difficulties you are forced to face.  Every one of us has a will, a strength, lying within us that is sometimes forced to surface. 

Susan Sontag in her work Illness as Metaphor said this:

Illness is the night-side of life, a more onerous citizenship.  Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at lease for a spell, to identify ourselves as citizens of that other place.

My coping mechanism, for this trip to the other kingdom, has been my photography and writing.  I have been working on a series of images about cancer.  It is in process, but thought I’d share.  The fabric in these images represents cancer. 

Cancer is not a disease that follows a concrete, linear or clearly defined path.  Just as we are each unique and complicated, cancer is a beast with a different energy depending on the person who is fighting it.  The motion of fabric and the ways you can move and manipulate represent cancer for me.  The gestures and facial expressions in relation to the manipulation of the fabric reflect the experience.  Sophia has been an essential part of Madelyn’s journey and I thought it important that she be a part of the photoshoots.


(The first four are somewhat finished pieces.  Each image is covered in encaustic medium...)

(I haven't yet added the the encaustic to these images yet ...)

And lastly on a more documentary note... check out my beautiful girl!

June 16 / Long Term Maintenance!

She made it! Her ANC was 1051 today. She finally started Long Term Maintenance. Such a relief. I can't really write tonight as all I have at home is the IPad, but I will soon. Just wanted you all to know our awesome news!

June 14

Madelyn had appointments yesterday, June 13.  Unfortunately, we were still a No Go to start Long Term Maintenance.  As disappointing as this was, there was still really good news…  She was almost there.  Her bone marrow IS recovering.  The virus is almost gone (rash is almost completely gone).  Her ANC was 726.  She needs to be at 750.  Her red blood cell and platelet counts were all normal! 

The doctors are very, very happy with how she is doing and so are we.  She hasn’t had this much energy for a year or more.  No anti-nausea meds, no pain pills, no meds at all for an entire month (other than her weekly antibiotics she’ll take for the next two years).  She is happy.  She is FABULOUS!!  And she has major hair growth.  Her last dose of chemotherapy was on May 13^th.  Amazing, what a month break can do.

So the plan is to try again this Thursday.  Madelyn and I will travel to Seattle Wednesday night and will be at the hospital at 8am Thursday morning.  The doctors feel confident that she will start Long Term Maintenance and that we should still travel to Switzerland.  I am really excited about this trip.  I’m excited to just focus on my family - having fun together - for a few weeks.  An almost cancer-world free trip… only a CBC needed while in Zurich. 

Look out Kühnlein’s… here come the Americans!

Identity

(For those of you who received the first version of this post.  My apologies.  I wrote this while watching a movie, listening to music and drinking wine.  With no re-reads.  Wayyyyy too much multi tasking.  I revised here… hopefully it will be a little more coherent…)

Here I am.  Sun pooring in.  Music on the stereo.  A quiet house, post tantrums, and fine French wine.  Time for contemplation. 

Oh wait… had to switch to Arial.  Can’t think properly in Times Roman. 

The drama of our lives right now.  I know you must be exhausted reading my posts.  Hearing my drama.  You, who know me well, Drama is my word.  I am not domestically oriented.  I am not subtle.  I entertain.  Like my five and two year old, I love pink.  I love color and laughter and brightness and esoteric art and energy and I love… love.  Am I really almost 40?  Am I a mother?  Am I a mother of a child with cancer?  Some days I can’t believe it.  I’m starting not to recognize myself.  But that is who I am. 

Who will my girls be?  Who will Madelyn be?  How will this epic battle mold and revise her?  Which adjectives will she choose for herself? I am so overwhelmed by this question lately.  I want to live … Out Loud.  I want my girls to live out loud.  Is that what they will want?  I try to exemplify that fun, creativity, love and kindness are the avenue’s to true happiness.  Do they hear me?  Do I hear me?

So what am I trying to say?  I guess that some days I don’t know who I am anymore.  This journey is changing me.  But more important how will it change my darling Madelyn?

And then… in the end… fuck it… does it matter?  Maybe we just need to dance together.  So I will forget to clean my house tonight.  Will you “not” clean your house for me tonight?  Screw you dishes.  Don’t open the spreadsheet from work that needs your attention.  Dance in the sunlight or under the disco ball or in the rain… with those you love.  They might not be here tomorrow.   

And if they weren’t – here tomorrow - would you dance the same?

June 6

Another disappointing day.  Her WBC count is still low.  She was not able to start Long Term Maintenance today... again.  


Hem  33.1    Plat  230    WBC  1.5    ANC  298


Her ANC needed to be 750.  Not even close.  She still has the rash, but the Parvo virus test came back negative.  The rash looks more like hives now.  The doctors think she has a virus of some sort (there are lots of different kinds "running around" out there) and it doesn't seem important at this point to distinguish which one.  It just has to run it's course; but because her immune system is depressed it is going to take her longer to rebound.  


So we wait.  Not so patiently.  


We are anxious about our trip to Switzerland, but also just for the mental closure. Long Term Maintenance is still involved therapy and we expect inpatient stays from time to time.  It includes one type of chemotherapy being given orally everyday, another kind weekly, steroids 5 days a month and an IV push of a third type of chemo monthly.  Plus she will receive chemotherapy via spinal tap every three months.  BUT it will mark an end to front line therapy.  Front Line Therapy - as defined by us - is the really hard, crappy, anxiety ridden stage of Acute Lymphoblastic Leukemia.  I.E. the last six months of our lives.  Long Term Maintenance represents a return to a somewhat normal life.


We will give it another try this Monday, June 13.  Wish MJ luck in fighting off this little virus and getting that ANC 450 points higher!!!  


Madelyn usually watches a TV show while we are talking with the doctor.  We used to think she wasn't listening, but lately we've discovered she is just being selective. She will ignore us when we tell her to put her shoes on or respond to a question, but later on she will repeat what was said or ask us to define a word we were using  Today she was NPO (meaning she wasn't able to eat until after her sedation).  When the doctor came in and told us her counts were still too low, she immediately pipped up, in in the middle of Dora, "I can eat then, right Mommy?"  We all started laughing.  Out came the snacks!


In other fun news, from Madelyn's world, she had a wonderful week.  Despite this little virus she is feeling absolutely fantastic.  Running, laughing, playing, being silly, splashing in the swimming pool....  She was able to be with Ashley (I was able to go to the studio!!!!!), we had a sleep over with Alaina and Keira (her best buds), a BBQ with the Fowler/Dawson's, beach time and hanging out with all the grandparents.  


She is such a capable little five year old.  She is still five, with allllll that that involves, but she has moments of such maturity it takes us by surprise.  When we pulled up to the apartment yesterday Sophia said "no like apartment, want home."  And Madelyn said in a maternal tone "it's only for one night Sophia.  I have a pokey tomorrow."  Sophia responded "oh, ok."

Last Week...

Here are a few images from last week (while we were still in Seattle).

She decided some new tattoos were needed this week.  She, again, received lots of attention -- which she loved.  All new people to talk to and tell her stories too.

Even on her legs.

One of my oldest friends Shelly came over to visit me us.  It was nice to have company in the midst of her low ANC (can't go out and do as much) and Daddy & Phia being home in Anacortes.  She's reading MJ a book.  We had to educate her on the Princesses...

All her hospital visits start with her Port being accessed.  Then we head to the waiting room to be called back for our doctor's visit.  Here she is working on a German App while waiting; learning her Deutch!

Heading into her Doctor's appointment...

Every time she goes in her vitals are taken.  Checking weight here.

Checking her height.  MJ always likes to see where she is "at."

Blood pressure.  She tells the MA which cuff is the right size for her arm.  As soon as the machine beeps she takes the cuff off herself.  She knows the drill.

She likes her temperature to be taken in her mouth, not under her arm.  She likes to hold the thermometer.

She also likes to "shoot" the cover into the garbage can.

After her appointments this month we have been arranging swimming lessons at the therapy pool at Children's.  It is awesome and she looooooooooves it!  

Yay!!!!  Back HOME!!!!

Life with Cancer

Our Life with Cancer has included many things.  Here are a few:


1.  I, Lisa, have been unable to read any fiction sense Madelyn was diagnosed.  I am reading a wide variety of things, but just can't do fiction.  I've been reading about wine, writing, parenting, cancer and travel.  I just can't seem to suspend belief for fiction.  I can only think in the concrete.


2.  Peter has been wearing clothes with holes.  Lots of holes.  Poor guy.  He has been severely neglected by yours truly.  I have recently, finally, rectified this situation.


3.  There was one day two months ago when the girls no longer fit into their clothes.  A growth spurt in unison.  Not a big deal for Phia as she has all of MJs old clothes, but Madelyn had nothing to wear.  I went to the Carter outlet store and bought 8 pairs of pants, 6 sweatshirts, 10 short sleeved shirts, 10 long sleeved shirts, 10 pairs of underwear  socks and four pairs of shoes.  In one day, in one store.  I had a two hour window and I knew I'd have no time.  So I got 'er done.


4.  Hospital puke buckets come in handy for many things.  We use them for a crayon holder, a craft bin and to hold our onions and potatoes.  Don't worry they've been washed.


5.  My Mom has been selling Peter's Mom's cookbook.  All the money she raises will go to the N Ave Beach Restoration Project in honor of Madelyn.  She has sold almost 100!!  How It Works, here in Anacortes, is also selling them for Madelyn. 


6.  When I prepare Madelyn's chemotherapy pills I have to protect myself.  I wear a mask & gloves, have a special pill cutter just for chemo and wear gloves to hand her the pills.  My little, baby girl is INGESTING these pills.


7.  The Leukemia and Lymphoma Society Team In Training group I met with back in April raised over $200,000 for research by running in the Vancouver and Paris marathon's.  We were so impressed by this that Madelyn, Peter and I decided she would become an Honored Teammate for Team In Training.  She has "joined" a group of triathletes  running in The Nations Race (Wash, DC) in September.  We will be cheering them on via pictures, email and visits to team practices.


8.  People always do a double take when they see Madelyn now.  Yes, she is bald and she is stunning.  A bald head is extremely kissable.  


9.  The top of the refrigerator is our pharmacy.  Pill bottles, miralax, thermometers, pill cutters, gloves, masks, medication lists, blood count spreadsheets, our Pediatric Cancer Bible.... it's all there and travels back and forth with us.  It's really the only thing we need to pack between the apartment and the house.  We have everything in both places so we don't have to pack all the time.


10.  Madelyn still loves to tell everyone about her professional pill taking skills.  As funny as this is, really it is a gift to Peter and I.  Medicine time for most pediatric cancer families is a nightmare.  A Serious Nightmare.  All we have to do is cut the pill, put it in a gel cap and giver her a glass of water.  That's it.  No screaming, no yelling, no crying, no chasing them around the house, no bribes, no awards.  No crushing the pills, mixing it with cherry syrup and sucking it up in syringes worrying that you got every last bit of the crushed pill. I thank Madelyn for this gift by constantly applauding her pill taking accomplishment.

June 1

Yesterday was supposed to be Day 1 of Long Term Maintenance.  I had stopped thinking about it as anything other than a given.  Unfortunately, that is not how Leukemia works.  Shocked and disappointed are mild descriptions of my feelings yesterday.  Her ANC plummeted to 350.  I was simply confused, worried and sad.  


What we thought was a reaction to sun (the chemo makes MJs skin very sensitive to sun) is actually, more likely, Parvo virus.  It is a very common childhood virus that ends with a rash on the cheeks (and sometimes moves to other areas of the body).  In immuno-competent children it is usually mild and no cause for alarm.  With someone who's immune system is depressed, it causes bone marrow suppression.  The test results confirming this theory will be in on Thursday or Friday.  I hope it is Parvo virus causing her white blood cell count to drop.  If it's not that, than what is it?  Her Hematicrit and Platelets were back up to normal.  If she tests positive for Parvo, she will receive antiboides via immune globulin injection Monday.  Also on that day, we are giving another try at Day 1 of Long Term Maintenance.  


So now we are in the immuno-suppressed sickness-rollercoaster.  She contracted this childhood virus.  Common.  But with MJ, when she gets sick it causes her numbers to sink lower than most kids.  If her ANC is this low it is hard for her body to fight it off.   Her little body just doesn't have all it's boxing gloves.  


Luckily, for her, the only symptoms she has are some sore throats and the facial rash.  She is still in amazing spirits and energy.  She is so, so happy to be home.  We all are.  She had a busy weekend full of birthday parties, visits with friends, BBQ's, grandparents and waking up in her OWN ROOM!! She is one happy princess.


In other exciting news, we have planned a vacation.  I know!  Crazy!!  We spoke with the doctor's and they gave us the ok to go to Switzerland.  Madelyn deserves it.  Peter's family lives in Zurich, Switzerland.  We travel there often and Madelyn loves it.  We have promised her a stay in a castle, a visit with Swiss cows in the mountains and a chocolate factory tour.  Her face was glowing.  


To those of you who know us well... ya, I know.  We couldn't just make it simple right?  California or Hawaii.  Somehow Peter and I manage to have a huge stress tolerance.  It does come back and kick us in the butt at certain points.  


Madelyn will visit the pediatric hospital in Zurich for a CBC, minimally, and possibly for chemo.  This delay in starting Long Term Maintenance put a little wrench in our perfectly planned timeline.  Oh well, we'll figure it out.  This is her and our life.  Cancer will not keep us from living it.  Damn it.

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.