Distracted

We have had a … distracted … Fall. 

There’s nothing like a bit of good ‘ole cancer-life STRIFE to remind us of our priorities. It’s fitting that this November, we are wiping our brows and reminding ourselves to breathe.  On the eve of her three year diagnosis anniversary, our girl has dodged another bullet. 

To summarize:

June 19 ANC 4200

July 29 ANC 4000

Aug 27 ANC 3200

Sept 23 ANC 2358

Oct 18 ANC 2008

So a quick downward trend that the doctor’s were concerned about and then to add heartache to worry, she started complaining of bone pain; her main symptom three years ago.

On Oct 18^th Madelyn had another bone marrow biopsy and lumbar puncture at Seattle Children’s Hospital.  While we waited for the tests and then the results, Peter and I organized what relapse would look like and be like for our family. We were strategising  preparing our speeches to Madelyn and Sophia and building up our crust of emotional strength again.

I am happy to report that my girl… is still CANCER FREE!  My precious, lovin’ life, crazy grown-up girl and her sister will continue to experience their new normal life.  Let me tell ya, there is no exhale of breath more powerful than after the words “her marrow is fine; there is no cancer present.” 

She is on a routine of blood counts every two weeks for the immediate future.  But last week her ANC was way up… 5,873!!!  Totally normal.

Thanksgiving is always a special time of contemplation for our family.  Three years ago Madelyn was diagnosed with leukemia.  That scared shit-less day… the whirling pool of dread… wrapping our heads around the possibility of our four year old baby girl dying… learning about different chemo-therapies she would have... preparing for surgery to place a port-a-cath in her chest… and there we sat eating turkey dinner in the Seattle Children’s cafeteria. 

And now here we are!  Still FREE and CLEAR.   

Madelyn is bursting with new energy and vitality.  She looks so healthy!  Peter and I nearly cried recently during a hike at Cranberry Lake.  She was not only able to hike all the way around – she practically ran the whole way.  

She still has a little trouble with her feet now and again and she continues to sprain her ankles regularly.  We also suspect a little chemo brain developing.  For Madelyn this involves trouble focusing, sitting still, troubles with Rapid Automatized Naming (part of brain processing) which is effecting her reading... but hey, all these things, are minor.  Ain't no thang.  She is alive and well.

She will be declared cured of cancer when she is 5 years post-therapy without re-lapse (12 years old).  Yes, we are thankful this November. Raise your glass this Thanksgiving to one year almost down!  

Halloween with her best buddies.

Soccer girl with Coach Daddy.

And here she is 4 years old and just diagnosed with leukemia.  

Wow what a change.

February, March and April 2013

Madelyn’s school, Mt Erie Elementary, asked her to write a story about perseverance which is the school’s Yearbook theme.  They are going to include photos from her parade and her story.  I thought you all would enjoy reading her story which she titled (all on her own) “My Hard Days.”  I loved hearing what was significant to her about this journey and the parade:

Madelyn doesn't really see her fight against cancer as perseverance.  She was diagnosed when she was four years old.  Fighting cancer is all she knows.  It is (was!) her normal life. 

Madelyn is rockin’ life these days.  She is full of a whole new kind of energy.  This spice and vivacity has permeated us all.  We are all rockin’ life these days. 

She has also started loosing that steroid look and her feet are kicking up in the air again!  She is actually jumping rope!  

Madelyn is able to focus her mind much easier and has been making great strides in her reading.  She continues to create constantly.  Coloring, drawing and now adding writing to her pictures.

Another big Thank You to Jake Whittenberg of King 5 News for the very well done piece:

Madelyn's Parade

 

Madelyn’s first post-treatment appointment… aka OFF CHEMO... included a Complete Blood Count, EKG (to make sure the chemo did not effect her heart), thyroid test, urine test and doctor’s exam.  All were normal.  And her counts were awesome!

WBC 8.4    Platelets 256    Hem 41.2    ANC 6,216

We have not seen counts like that since this whole nightmare began and since, frankly, I even knew what a WBC 8.4 meant.

Her second post-treatment appointment read about the same!

WBC 7.6    Platelets 239    Hem 38.6    ANC 5,062

Her port removal surgery went without a hitch.  She was scared going into the OR (who would not be?) but played it like a pro.  “Mama, I am scared.  Let’s go get it over with.”  Post surgery lasted just a few short hours and finished with a “Mama, I’m gonna throw up.  But it’s ok, let’s take a bucket and go home.”  We made her wait the nausea out a little… but finally she said “it’s ok Mama, let’s go home.”  She had one day of pain pills.  (I mean seriously.  A little pain in one specific spot compared to all over body pain for 2 ½ years.  No biggie).  The very next day we were at a fundraiser for the Anacortes Fire Fighters who were doing the Leukemia and Lymphoma Society Firefighter Stair climb.

We were at Children's at 6:30am.  Enough said.

Whale and blanket got name tags too.

 Fun nurse.

Gettin' her gown on!

After surgery she spent about an hour in the recovery room and then came to us in her room.

Watching My Little Pony.  Yes, Peter likes it too.

Starting to not feel so good...

See ya!

Shortly after therapy ended we started to taper her medication for her foot and leg neuropathy.  Peter and I were anxious to get her off all drugs.  We started a very slow taper on Feb 9^th (ending a month later).  She has only had minimal pain since.  The only medication Madelyn is on right now is an antibiotic which she will, most likely, stop taking at the end of this month.  She has not been medication free since 2010. 

Life is seriously good.

King 5

I know most of you have already seen this... however, there are a few people out there who have not... 

Franziska Widmer... Kathy... you must see this wonderful piece done by King 5 News in Seattle.  They did just a wonderful job...

Seattle King 5 News by Jake Whittenberg

Thank You!

Wow.

When we moved to Anacortes 12 years ago we didn’t know if “this was the one.”  The town we would settle in.  The town we would buy our first home in.  The town we would raise our children in.  But after only 12 months it was obvious.  This WAS home.  Peter and I bought an old home in Old Town and we opened our business, KP Studios. 

This town has been taking care of us ever since. 

When Madelyn was diagnosed Leukemia when she was 4 ½ years old, each one of us received an outpouring of support.  Meals delivered for a month by friends and people we didn’t know, church prayer groups focusing their energies and blessings on my girl, stuffed animals and blankets from our local Bunnies by the Bay, furniture and supply donations for our Seattle apartment, pictures to remind us of home, activities and toys for the girls, visits and daily calls from friends and family, a hat party when Madelyn lost her hair, new clothes when Madelyn’s no longer fit due to the medications, books for Peter and I to read, gift cards for restaurants close to our apartment... Not to mention the calls, the emails, the letters, the cards, the visits with people we loved and individuals that we didn’t know.  People were thinking of us, worrying about us, loving us.

But unlike most cancer families going through the same thing, that love and support has continued for 2+ years.  Unwavering.  Even as recently as just a few months ago Madelyn’s counts crashed and we had to drive to Seattle Children’s ER for a fever.  When we returned home, exhausted, 11 family members were there in the drive way waiting for us with smiles and cheers.  Then the Harrington’s delivered us a warm, home cooked dinner.

And now… at the very end… when families generally celebrate soberly and quietly together… our amazing town says “No Way!  Let’s do this thing right.”  That parade, my friends, was truly the most astounding moment of my entire life.  It is the people of Anacortes that make our town so unique.  Anacortes knows how to create a special kinda beautiful person and cultivates love and thoughtfulness.  This village is a family.  

The whole week was a special one.  From all the wonderful messages after she was officially declared cancer free, to the incredible amount of cards and gifts on Friday (her VERY last chemo pill day) and then the parade on Monday!  And all I can say is Thank You from the very bottom of my heart.  Thank you for making Madelyn’s battle AND victory something  remarkable.  Cancer touches every single person in some way.  That parade was a celebration of lives lost, lives won and the caregivers who spend every waking moment waiting and hoping.

Boy, Anacortes, do we know how to celebrate life!!!!

There are so many things I have to tell you about this week and the parade... I will be writing a full account soon.  For today I just to desperately say THANK YOU and I love you.  All of you made her last chemo day and her end-of-treatment something both she and Sophia will NEVER forget.

Here are some footage/article links that I know about.  

Skagit Valley Herald

Anacortes American

Anacortes Now

I am so glad King 5 did a piece on this.  I couldn't be more happy that all of Washington State is going to find out how remarkable the people in our town are.  It will air on King 5 tonight sometime between 5:30-5:45pm.

Here are a few of Peter's pictures...

What Madelyn found on her front door step Friday after school (Feb 1st) - last chemo day!!

Let's do this thing in style!

Last chemo pill down the hatch!

Then dinner in the hide-a-bed while watching a movie!

A little "Good Bye Cancer" chocolate cake!

Can you believe this?  This, again, is what she found Feb 1st.  After this, Peter and I kept saying "all this AND a parade!?? Oh my goodness."  

Thank you, thank you, thank you, thank you for making them feel so special.

We decided they needed to sleep with all those balloons that night.

Saturday morning, Feb 2nd, we just couldn't keep all that gorgeous color at home.

Parade Day!!  Feb 4th.

Our original plan was for Madelyn's best buds and family to be at school on Monday.  When she came out we would all cheer and congratulate her.  Then she would get in the police car and drive to our house for a surprise after school party with everyone.  Chief Bonnie Bowers called and said.... "well, the police officers talked and we'd like to have a little parade down Commercial."  We were both thinking a few police cars and a couple fire trucks.  Well!  It was a tad more than that!  :)

Here are friends and family waiting for Madelyn to come out of school.

Here she is with her first grade teacher Ms Morrison seeing everyone for the first time.

Here we are at the Safeway parking lot, the staging area for the parade.  That is Chief Bonnie Bowers holding Sophia and that is our radical chariot in the foreground.  1963 Ford Falcon convertible owned by Colleen Smiley.

Flower crown from Jean at Donatellos.

Check out these cool signs my good friend Shelly and graphic designer extraordinaire (aka Auntie Shelly) made for the parade.

YAY!!!!  Seattle Children's!!!!!!  Thanks Nicole and Shelly for making this happen!

Madelyn meeting the mayor Dean Maxwell.

Here Madelyn is seeing Miss Monique, Miss Virgina, Stacey and Nurse Emily from Mt Erie Elementary.  She LOVED seeing everyone she new in the streets.

Mama having a hard time not crying...

Parade ended in front of our house!

LOVE this!  Some of the police officers had their kids with them.  

Here is Officer Leaf Jacobson with kiddos.

The two ladies of the hour... Madelyn and...

Chief Bowers ending the parade with a smile and a wave.

Yes, we had to sleep with all the balloons again.  Definitely.

All my love to each an everyone of you...

Lisa