August 4th

No big announcements on Madelyn's health this week... just her well being.  Starting Tuesday afternoon she was free of side effects from the dexamethazone.  She is back to feeling good and having wonderful energy.  Yay!  She has gone to summer school every day this week... walking way ahead of us to get there fast and on her own.

I wanted you all to be the first to know.. it is official!  MJ has enough hair to have BED HEAD!!!  We had a big Wooohooo about this and had to document it.  Check it out.  Rad.

She also discovered that she has her first, ever, loose tooth!! 

First real HAIR wash... (not a head wash) in about four months.  Again, rad.

Sunday evening we had a fun BBQ with the growing (yay!) Schelling clan.  Then we headed to the rock.  Climbing plus pink tutu's ... even more rad-ness.  Madelyn is a brave girl - you all know that.  But she is also fearless.  Not in a reckless way; in a quiet, calculated and focused way.  She loved climbing with Daddy.  And she did some seriously vertical climbs.

Helmet didn't quite fit... and she was pretty tired.  Phia ended up staying with me while MJ climbed.

August 1st

We are back State side!  We have been for about a week and half, but I am just now getting organized... well, sort of.  

It took the girls about three days to adjust to the time zone.  Then we headed down to Seattle on July 25th for her monthly infusion of Vincristine and check up.  Her counts were good, very good and she was looking and feeling wonderful.

Hem 39.8    Plat 265    WBC 2.9    ANC 1572

Her ANC is a bit high and if continues to go up they will increase her weekly dose of Methotrexate.  She has this on Mondays so Tuesdays she generally feels a bit "yucky."  For the next 1.5 years they are going to keep her immune system depressed so that the Leukemia has no place to live.  They want her ANC to be between 750-1500.

Did you notice, I said 1.5 years, not 2 years?  We thought it was 2 years of Long Term Maintenance starting at the end of Delayed Intensification.  HOWEVER!  It is actually 2 years starting at the beginning of Interim Maintenance.  So her chemotherapy with stop six months earlier than we thought.  She'll be done the first of Feb 2013.

After her infusion she went to a swimming lesson... still bursting with energy.  Then we headed to the apartment and I began packing!  We brought a small load home with us.  The end of this month we pack up and leave the apartment.  Hopefully, for good.  Our lease ends on August 31st.  For a few months we'll have CBCs every two weeks (which we can do as a day trip) and on her monthly infusion days we'll spend the night with my sister who lives in Kirkland.

This week, MJ has been feeling a little crummy.  The Vincristine has given her pains (legs, jaw) and the Dexamethazone (steroids for five days every month) gives her heart burn, crankiness, lower energy and big mood swings.  

She did go to summer school on Wednesday and part of the day on Thursday though!  She was so excited that she had her back pack on one hour before we left for school.  Which meant Sophia had hers on for an hour as well.

I have a ton of pictures from Switzerland.  It's a little overwhelming choosing what to show you all, but I thought I would at least start with her visit to the pediatric hospital in Zurich...

Having a mini-dance party in the middle of Zurich.  We are waiting for the tram to take us to the hospital.  She has her Emla cream on her port...

  

Being goofy... still waiting for the tram.  We have our bags with us because immediately following the doctor's appointment we jumped on the train to the French part of Switzerland.  We rented an apartment for a week near Sion, in a town called Nendaz.

As usual, she is a little nervous and scared while accessing.

Much happier with the needle out.  Here she is being examined by the doctor.

Happy and contemplative after her appointment is all finished.  Back on the tram heading to the train station.

Pillow fight on the train to Sion.

At the end of one of our hikes in Nendaz.

MJ riding in Grandpa's backpack at the end of the hike.  Sophia and MJ were both tired of walking...

Bungy trampoline.  

She says that next trip to Switzerland she wants to do paragliding... she saw a lot of people doing it in Nendaz.  She is so fearless.

Any trip with kids involves plenty of these ... lots of empty milk and alcohol bottles in the recycling...

There is a reason our strollers end up completely trashed...

Cousin Tierry.... more family pictures to come...

July 14... I think..

I believe it is July 14.  That is, ummm, Thursday?  Wow, vacation!

We are having a wonderful time and there is so much to tell.  I am going to wait to show you it in pictures though.  I will post images when we return next week.  For now I wanted to give you all an update on how Madelyn is doing/feeling.  

Wonderful.  She is fantastic.  We went to the Kinderspital in Zurich on Monday.  Her counts were good.  Hoooray!!!!

WBC 2.02    RBC 38.3    Platlets 231    ANC 920

The results of the CBC and the doctor's examination were sent to our Attending at Seattle Children's the same day.  We heard back from them immediately and MJs doctor was pleased with the results and saw no need to make any changes to her oral medications.

The Zurich Kinderspital did things a little differently than Madelyn is used to, but not by much and not significantly.  Anything she was uncomfortable with she told them about and they were completely accommodating without a blink of the eye.  People that work in children's hospitals, the world over, are very special people.  For example, she always sits up when being accessed at home.  Here in Switzerland they have the kids lay down.  Madelyn likes to have everything described to her (what they are doing when).  They had no problem with this.  She got a candy after she was done with her blood draw.  She like this difference.

Something I didn't make much note of at the time, but was obviously a change MJ noticed was that the needle looked different.  The top of the needle that is.  Instead of a butterfly shape it was more oval.  I am fascinated by the girls observations.

When we started up in a gondola here a couple of days ago Madelyn said to us excitedly "It's like were in space!  looking down on a planet with lots of trees."  She was so excited.  The glee was exploding from her.

Her labs came back very quickly.  Much quicker than we are used to, but it was also a much smaller department.  Switzerland has a population of not quite 8 million - for the whole country.  So you can imagine how rare pediatric cancer is.  I notice this simply with the stares MJ gets here.  That is no matter though... she and we are having a marvelous, cancer-free time.  

And my oh my.  The hair!  She has so much hair coming in.  She will have a full head of hair soon and it is a different color.  Dark.  She is also a complete peanut right now.  Tan, tan, tan.  That girl simply does not burn.  Phia and I on the otherhand are re-applying sunblock like it is going out of style.

The weather has been warm.  The last two days are the first days of cooler temperatures and rain.  We are in the mountains now just our family with Urs and Harriet.  We head back to Zurich and the extended Kuhnlein's for a couple more days on the 18th.  Then home.  I will report more on MJ and our trip on our return.  The girls and we are doing great.

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!!!!