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.