Feb 29

Madelyn had her monthly appointment at Seattle Children’s on Monday.  We were all feeling a little “drippy” and congested so instead of going to my sisters we stayed in a hotel.  We arrived in the city about 1:30pm and went straight to Stone Gardens in Ballard.  The girls climbed with Peter for about two hours.  Each time Madelyn climbed she went just a little bit farther.  By the end of the two hours she was almost to the very top and VERY proud of herself.  Peter was also happy – his girls were climbing and lovin’ it. 

As you all know, we like to make our trips to Seattle fun.  Why?  Well because it’s fun.  Plus we like the girls to have positive experiences in Seattle and not just associate the trip with going to the hospital.  Besides we all like something fun to look forward to in the midst of waiting, waiting, waiting and chemo.  We had such a marvelous weekend together.  You know… I really love hanging out with my family.

After the climbing gym, we checked into the hotel downtown.  It was in walking distance to the Bainbridge ferry and Ivars.  We ate at Ivars watching the ferry coming and going.  Then we headed down to Pier 57 and the carousel – taking two spins.  Long spins for mama… thought I was gonna throw up.

The next morning our appointments started at 8:00am.  Luckily the national shortage of IT Methotrexate did not effect MJ - she was able to have her spinal tap, as scheduled.  She went into the procedure room like a champ, but had a hard time waking up.  She was pretty sad, dizzy and tired, but about an hour later she was doing great again.

All her chemotherapy is increasing these days.  Oral, infusions, spinal tap chemo… It is a combination of her growing and the oncologists pushing the numbers.  They want to make sure she gets all the chemo she can tolerate.  The effects, long term, are reducing the chances of relapse and saying good bye to cancer for good.  The short term effects are increased discomfort for Madelyn.  Her post Children’s week is her “hard” week.  Sophia knows what this means.  It is harder for Sophia to cope with lately though… simply because she is three.  Any Mom’s of three year olds know what this means. 

Today, Wednesday, we are seeing those side effects already.  She woke up with head aches, body pain and jaw pain.  She is really not feeling good, but we are giving her pain medicine and encouraging her to still go to school.  At home she just sits around and focus’ on how she is feeling.  With us, she is in that “comfortable” place so the wining and sadness (from the dexamethasone) know no bounds.  At school she is much more distracted and able to re-focus.  Sometimes it’s just not possible to get to school… but we really try.  The medicine also gives her indigestion and constipation.  This month I started her Priolsec three days early and gave the first dose of Miralax before any symptoms have begun.  I am hoping this helps a little.

After her appointments were finished we ate and then headed to the pool.  Madelyn and Sophia’s swimming teacher was sick but the pool let us “splash” around for an hour.  Madelyn is a fish these days - so confident and carefree in the water.  It is such a joy to watch her self assurance and the resulting pride.

Next Daddy had a doctor’s appointment so the girls and I went to the Zoo and visited the Seattle Troll.  The girls love the Troll and so do I… Last stop was Bizzaro for dinner - one of my favorite restaurants in Seattle.  Madelyn and Sophia just had a blast here.  It is a real feast for the visual senses.  Upside down rik shaws, bikes and tables hanging from the ceiling, tons of chandeliers, funky paintings… We played “I Spy” almost the whole dinner – so many fun things to pick.  I love the way Sophia plays:

Sophia:  “I Spy a silver fork.” 

Me:  “Is it that silver fork right there?”

Sophia:  “You got it Mommy!  Good job!”

SO.  Madelyn’s Make-A-Wish trip is officially in place!  In a couple weeks we will be going to Tucson Arizona to a dude ranch.  Madelyn will be riding horses, taking care of horses and hanging out with cowboys and cowgirls.  I am so happy for the girls – getting to have this very special experience.  I will of course take lots of pictures and update you as soon as we get back.

Here are pictures from our super fun fantastic family weekend in Seattle… that just happened to also include Seattle Children’s Hospital J

Analyzing the route.

Team Climb Baby.

Climbing wasn't the only thing happening at the gym.  Little Tickle Monster too...

That's MJ in the pink.

A very happy Daddy.

Waiting at Children's.  I forgot our activity bag!  No coloring, no books, no games.  Can't believe I did that!  Oncology has crayons and pictures luckily...

Waiting for the "Sleepy Room."

Struggling to wake up.  Dizzy, nose stuffed up, hungry, no happy.

Zoo... what to do first?

Oh ya, ice cream was promised.  That's first...

I got this look a lot this weekend.  

Sophia was NOT happy having her photo taken this weekend, at anytime.  Go away Mommy!  STOP TAKING MY PICTURE!  I remember Madelyn being like this at three years old too...

Sophia kept stealing her sisters ice cream...

Amen.

February 11

Hi everybody!  Madelyn had her monthly visit at Seattle Children's on Monday and all continues to be well.  Her numbers were good:


RBC 39.2    WBC 2.5    Plat 265    ANC 1200


ALT is still in the "ok" range, but will continue to be monitored.


Dr Pollard decided to continue to push the chemo. Madelyn had another increase in her 6-MP chemo and based on the scary shortages of Methotrexate I don't suppose we will be seeing an increase in this drug anytime soon.  Ugh, this is so scary.  We don't know how it will effect us yet; I will keep you all posted.  


If you aren't aware, hospitals nation wide are in short supply of Methotrexate.  A drug that plays a major roll in Madelyn's treatment.  They are in extra short supply of the preservative free type which they use for spinal taps.  Madelyn is due for this procedure (Methotrexate in her central nervous system via spinal tap) on Feb 27th.  


Here's a link to the story on ABC News & NY Times:


http://abcnews.go.com/Health/CancerPreventionAndTreatment/critical-shortage-childrens-leukemia-drug/story?id=15557922#.TzcI4LGPUsI

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=1&ref=health


She just finished her steroid pulse today and so far it has been ok.  She missed a little school due to pain in her legs and jaw and constipation, but in the emotional and insomnia departments it was better.  


We returned about 10 days ago from a fantastic trip with friends and family.  My parents and two good friends of ours went with us to Hawaii.  We rented a house on the beach.  We all just relaxed, played and had big, long, boisterous meals together.  It was really good for the four of us.  I, in particular, have needed a little re-grouping time.  It was hard to leave, but I am back and working on my personal projects with new vigor.  Here are a few shots from the trip:

Lots of sand castle makin!

MJ with Auntie Shelly.  My good friend in Seattle.

The famous shaved ice!

MJ talking with Uncle David.  My good friend from NYC.

Watching the HUGE, GINORMOUS waves on the North Shore.  So cool.  I've never seen anything like it.  No swimming that day obviously...

The fearless boogie boarder.

Pot was too small with all the mouths eating corn this night.  

Intertube blowing competition.

MJ heading out for her surfing lesson.  Yes, that's right people.  

She rocked the waves.  

She stood up!!

Shrimp shack eating...

Jan 18

This is the first message I read this morning:

My warrior and precious daughter is now my angel. After valiantly fighting this insidious beast for almost 18 months, Leann Elysebeth is now at peace and pain free. She fought to the end and took her last breath at 3:17pm today. Thanks to all of you who have supported us on this journey.

My heart just broke… again.  It breaks a little more with each hurtle Madelyn has to overcome and suffers a huge crack when I hear news like this.  Leann’s Mom Karen was on bed rest with her pregnancy and not at the hospital when her first baby girl left this world.  Leanne had relapsed and was preparing for a bone marrow transplant… then pneumonia. 

Madelyn in contrast continues to do well.  She had a CBC on Tuesday at Island Hospital. Her recent increase in chemo dosages seems to have pushed her ANC down to where her Oncologist want it to be.

Hem 37.6    WBC 2.7    Plat 332    ANC 1385

Her ALT is still running high though – 83.  We will continue to watch this.  The ALT test is measuring liver injury.  All these drugs she has to take are affecting her liver function.  It’s worrisome because she has 14 months of treatment left and we need that liver working to process all these foreign chemicals.

We all went on a small vacation to Leavenworth this weekend.  We went with our good friends and favorite travel buddies The Harrington’s.  Madelyn and Brennan took lessons at the in-town ski-hill, we checked out events at the Ice Sculpture Festival, we went sledding… we played in the snow.  It was FUN!

Our trip back over the pass, including chains, was epic and then the snow continued! At about 6pm near Barring on Hwy 20 Madelyn started screaming and crying that her ear was in pain.  She had mentioned it hurting during her ski lessons, but I had thought it was just the cold.  So a call to the on-call Oncologist confirmed what we were thinking.  ER time.  Most likely it was an ear infection, but in case it was something else we had to take her to the hospital.  So instead of heading home on Monday night we drove straight to Seattle Children’s.  Madelyn was checked in by 8pm and discharged with an ear infection by 11pm. 

Brother, our life.  I am thankful that it was just an ear infection and we were in a place we trust and know so well.  Nothing like a little extra drama to end a five-kid, four-adult weekend in the snow…  That’s right we adults were out numbered and we felt it.  Boy was it fun though.

Those cracks that happen in my heart are re-cemented on weekends like Leavenworth.  Watching Madelyn smiling as she smokes it down the hill and says “weeeeee” at the same time… truly, they are the best medicine for my broken heart.  Watching her so adamant that she was NOT tired and damn mad at me for potentially missing fireworks and dinner out with Amy, makes me unbelievably happy.  (She did not miss either).

The Make-A-Wish Foundation has decided to grant Madelyn a wish.  I will keep you posted on this excitement as it unfolds…

Please remember tonight that there is a family out there devastated by the loss of their 14 year old baby girl to cancer.  Send their angel your love, send their family your strength and give your kids an extra hug… and, heck, throw in a cookie.  Who know what tomorrow will hold…

Jan 3 / long day

My girls are really good at sitting.  I decided to do our Children's run in one day yesterday.  My family was all together over New Years and I was ready to have a quiet night at home on Monday.  So the girls and I left for Seattle at 8:30am and Peter stayed home to work.  The girls just talked and snacked and played and sang the whole ride down.  We pulled over on a freeway on ramp around 9:30am to put MJ's EMLA cream on.


Our lab appointment was at 10:30am and our doctor's visit was scheduled to start at 11:30am.  We got right in for our labs, but ended up sitting in that waiting room from 10:30am until 12:45pm.  I brought snacks plus we raided the infusion rooms snack/drink area.  Other than snacking and a little coloring, we read books the whole time.  I am just amazed by Madelyn and Sophia.  They very happily sat and read books for over 2 hours.  Never complained once or got those "I'm bored wiggles" that most kids, understandably, get.


Madelyn's counts were good, but ANC and ALT are still running high.  


Hem 38.8    Plat 206    WBC 3.1    ANC 1953


So the doctor increased Madelyn's weekly oral Methotrexate dosage. 


The ALT is a liver function count.  It is running high which means her liver toxicity is high (from chemo).  We will get this checked again in two weeks at Island Hospital.


Madelyn was a little lacking in spunk for a few days this week and complaining of a belly ache.  We are thinking that all the extra eating and treats may have caused her to be constipated and the lack of energy may be from too much excitement from all the cousins (and not enough sleep).  I have three sisters and each of us has two kids.  Which is super fun for all the cousins. Our New Years was busy, loud and sleepless.


We were finally ushered into an exam room at 12:45pm.  I used all of my will power to not be irritated.  It isn't their fault.  It's the holidays fault.  The doctor reviewed her counts and did the physical exam.  Madelyn got the ok for her Vincristine infusion.  (This chemo will also increase next month due to her continued growing).  Next we waited for the nurse to come for her infusion, but luckily that didn't take too long.  


The doctor's know us and our routine.  When Tina walked into the room she said "how late are we for swimming lessons?"  Luckily we were not.  I had factored lunch in the schedule and our infusion room snack raid would probably be sufficient to get us through lessons.


Madelyn has no problem going to Children's when she knows a swimming lesson is at the end of the day.  She just LOVES her lessons.  I spoke with her teacher and now Sophia will have her own lesson too!  Yesterday was our first day of this.  Sophia was so excited to start her lessons and be just like big sis.  So at 2pm Madelyn had a lesson and I splashed around with Phia and then at 2:30pm we switched.


Next we had to take a run to the pharmacy so we did not leave the hospital until 4:30pm!  We stopped for a dinner to eat in the car for the girls and then we were off to sit in traffic.  The girls inhaled their dinner and passed out before we reached Everett.

Dec 23 HAPPY REMISSION DAY!!

Today is going to be a good day.

Dec 23rd is the day one year ago when Madelyn was declared in REMISSION.  I don’t think I’ve ever cried that hard from happiness, ever.  It meant that she would be officially labeled Standard Risk and an Early Rapid Responder.  In other words, her path through the treatment maze would be easier because she would need less chemotherapy.  These two labels have made a huge difference in Madelyn’s experience with cancer. 

Chemotherapy is a wonderful thing.  It has been saving the lives of people for about 40 years now. Madelyn has received about 8 different kinds over the last year and currently is on a cocktail of 4. All the other medications she takes are simply to treat the side effects of these chemos.  Oncologists spend more time combating symptoms of the treatment than anything else.

It is time for a new solution and scientists are out there working on it.  They are getting closer to new treatment paths.  The regiment of drugs that pediatric leukemia patients take date back to the 1960s (with perfections to the drug symphony happening every year).  High Risk patients have a very, very long, hard treatment path and that road continues throughout their life due to the long term effects of these toxic drugs.  I look forward to the day when all this changes…

Madelyn is going to spend this momentous day doing nothing momentous.  Her biggest challenge today will be how to sneak one more candy in her mouth when Grandma isn’t looking.  Madelyn and Sophia will be spending the night at Urs and Harriet’s and making ginger bread houses.  Peter and I will have a night to ourselves to rejoice.    We have so much to be thankful for this year. 

One year down.  14 months of treatment to go…

Dec 19

It has been a long time since my last post.  Sorry everyone. I have been struggling.  Madelyn is doing amazing.  But I am struggling.  Thanksgiving Day was the one year anniversary of Madelyn’s diagnosis.  I have been very contemplative the last few weeks.  I have wanted to bundle up my little family and run away to start something new, something fresh.  Essentially I am distracted, tired and sad.  The anniversary is just shaking around my insides a little.

Madelyn has 14 months of treatment left.  I think I am more scared of treatment ending.  Chemo keeps the demon at bay.  We will only know for sure that she has beaten this monster after five years of no recurrence.  Five years of waiting, watching and worrying.

So that is what is going on in my head...  Madelyn, however, has had a fantastic couple of months.  She is simply a 5 year old, being a 5 year old. She has been full of energy, spunk... and well, just growing up.  I am amazed in her transformation in the last four months.  She has had her first dance recital, her first skiing lesson (Peter is especially excited about this one), is starting to sound out words (beginnings of reading), she is swimming across the pool all by herself and continues to be the most extroverted, confident five year old I have ever met.  November was her best post-infusion and steroid month yet.  Insomnia and hunger, yes, always... but energy was still good and hardly any extreme emotions.  

On December 5th she had her “big” day.  Every three months she receives a spinal tap with chemotherapy placed in her central nervous system or “going to the sleepy room.”  This always makes her nervous and anxious.  She also can’t eat before the procedure.

We’ve tried hard to teach Madelyn and Sophia words for describing their feelings.  These are big concepts to understand at 3 and 5.  If they are able to describe their feelings it can help a lot in coping with that feeling - we adults have trouble with this too.  When we walked into the sleepy room Madelyn said a couple of times “I feel very nervous.”  The doctors and nurses immediately surrounded her and told her why she DIDN’T need to be scared.  Which didn’t make sense to me.  It’s a scary room for me!  She was just describing her feeling and didn’t need anyone to fix it.  She just needed us to know.  Which I think is so brave and mature.  Peter and I’s response to “I feel very nervous and I am a little scared” is this:  “That’s ok.  It’s ok to be nervous and scared.  I understand why you are feeling that way.  If you need Mommy or Daddy, the doctors or the nurses to do something for you - to make things easier - you let us know.  I love you, Madelyn.”

Madelyn’s counts were good, but her ANC is still running a little high:

Hem 37.9    Plat 213    WBC 3.1    ANC 1916

The doctor decided to wait four weeks before increasing her chemo dosing again. (It is the “sick season.”)  Looks like we’ll be heading towards another increase in chemo though.  We went to Island Hospital today for our interm CBC and counts are still a little high:

Hem 36.0    Plat 321    WBC 3.2    ANC 1808

She is growing.   A few weeks ago (again overnight I swear) she grew out of all her shoes.  We bought her five new pairs of shoes in one store.  Rain boots, snow boots, runners, “fashion” boots (as MJ likes to call them), croc’s and dress-ups.  She is in the 75th percentile for weight and 50th percentile for height.  I was glad to hear this news as chemotherapy often stunts the normal growth of kids.

All this growing, meant an increase in dosing of her drugs.  We saw the effects of that increase.  She was very emotional, tired, hungry, tummy pains and had insomnia worse than usual.  We also had to give her more pain meds.  She cried every morning, all morning, from Tuesday - Friday and most nights.  Luckily, when she gets to school her teacher says she is well distracted and is doing well... just tired and hungry.

During Madelyn’s steroid week Peter is often sleeping in the girls room.  Madelyn’s insomnia keeps her awake and her waves of emotions make her nervous and anxious.  So she comes into our room most nights and sleeps with us.  Peter eventually gets up and crashes in the girls room.  I always laugh seeing Peter passed out amongst pink sheets, a white, billowing overhead tent and engulfed by princess pillows and pillow pets.

She is still bothered by her short hair, but it doesn’t get her down.  She crawled into bed with us one morning this week and said “Mama, Sophia is awake.  She said she loved me.”  I responded “oh, that is so nice honey.”  “Ya,” she said “even with my short hair!”  Oh, my heart.

When we arrived at school on Tuesday morning during her steroid week, she said the bandage over the site on her back (from the spinal tap) was bothering her and she wanted to take it off.  So I went into school with her and we headed for the bathroom.  Usually she likes to take bandages off slowly by herself.  But I could tell she was tired and worn out.  I asked her if she would like me to count and then take it off very fast.  We’ve never done this before.  Her face was sad but resolute:  “Yes, Mama, ok.  Let’s do that.”  So I lifted a little corner and counted.  As soon as it was removed she started to cry.  But not huge screams and tantrums... just a sad, solemn cry.  She knew it was best solution, but was sad about it and the discomfort.  So strong in these tiny little moments.  It’s because she has to do be brave so frequently that my heart breaks.

The holidays are about being thankful and thoughtful for all the special people in your life.  I have so many people in my life that I am extremely grateful for... Peter, my two fabulous, wonderous girls, my family and all our fantastic, supportive friends.  I have felt the weight and warmth of this love this year.  We could not have made it through without each other and all of you.  

December 23rd Peter and I will be celebrating just the two of us.  This is a date we will never forget.  The day we were told “do you want the good news or just the really good news?”  I burst into tears as we were told Madelyn was in remission! I am especially thankful that this strong, beautiful girl is still HERE with us.  Sitting next to me, hugging me and saying “Mama, I love you” with her dancing eyes.

N Ave Beach Clean Up Day!

Here is a letter from Harriet Kuhnlein, Peter's Mom, who is heading up the organizing of the N Ave Beach Restoration Project:

Dear Friends and Beach-Buddies,

Things are happening quickly now!  We had a good meeting with Gary and Jonn at the beach, and we know what to do—or at least how to start.  The first step will be to remove the roots of the invasive blackberry, scotch broom, and a few of the anise.  At the same time, pick up of litter can be done.  The City will come by and pick up the piles- once the job is done. This will set up for the architectural plan which can hopefully be made this month (see below).  Replanting some adjacent native grasses will be done, too.

Urs, Jim MacDonald and Peter will meet at the beach at 10 am on Friday, November 11, to scope out the “big root dig” and make a plan for the rest of us.  We are asking interested others to join us at 11 or into the afternoon to help out.  If you want to join in on the dig, bring along your pickaxe, shovel, and thorn-proof garden gloves.  We also hope to get some equipment from the City for the job. They are much more expert at knowing what to do than we are, and have given great advice to us volunteers.

Of course, this is all weather permitting!  Ground wetness is helpful for root-digging, but in case of a downpour, we can find another day.  In fact, we may need more than one afternoon to get it done.  Let’s just give it a try!

No need to RSVP to this message—just show up if you can.  Come along even if you don’t want to swing a pickaxe—we need a cheering section and some pictures.

Yeah—it is really getting there!

Thank you in advance, Beach-buddies!

Harriet

Nov 8

Madelyn had her monthly appointments at Children's yesterday.  It was a busy day in the Oncology Department, but our appointments still managed to stay on-time.  We arrived at 9:30am and were done by 12noon.  She had her routine CBC, doctor's checkup and chemo infusion.  Her numbers are still elevated so they are increasing her oral chemotherapy dosing. 


Hem 37.7    Plat 194    WBC 6.1    ANC 4337


(ANC should be between 750 - 1500)


Her liver is a little elevated for toxicity (nothing to be concerned with yet, but watched) so we will be testing that in two weeks again.


She has had a little snuffly nose the last three or four days, so they also did a nasal wash and will be testing for any viruses.  


Madelyn starts her five days of steroids this week (which means not sleeping well, sadness, mood swings, hunger) and possible pain.  Last month we only had to give pain meds one time!


Madelyn continues to be in fantastic spirits and energy.  We have been trying to make our visits to Seattle fun for the girls.  They love to stay in hotels so we have been doing that when we can't stay with my sister.  This last hotel had a swimming pool!  The girls and I swam for two hours on Sunday afternoon (Peter had some appointments for KP Studios).  Then they bounced on the hotel room beds and we went out for Mexican.  There was an outdoor light display near the hotel and we ran around that for awhile before bed.  6:30am Monday morning MJ was at the pool again before leaving for the hospital and Phia stayed with me to pack up.


Uncle David sent the girls these blow up animals made of heavy duty rubber.  They love them and have been going crazy for them all week.  I told them no, no.  Absolutely not.  We can not bring them to Seattle.  Peter, Madelyn and Sophia were sneaky though... the three of them conspired against Mama.  You can see in the pictures below... the girls bounced all around the hotel and Seattle Children's.  What a spectacle!   


Madelyn was a little nervous before her appointments this week.  This is normal for her.  We let her know it's ok to be nervous, that we will be right there with her and to tell us if there is anything we can do to help her.  Then we commence with a heavy dose of distraction.  She ended up doing great during accessing this time.  Just awesome.


** REMISSION DAY - CANCELED ** 
So are going to cancel the Remission Day celebration on Dec 23rd.  After I posted this idea last week, I talked with Madelyn about having a party to celebrate her Remission.  She was not very excited about this idea.  I spoke with her again this weekend and she is sure she doesn't want to celebrate.  Peter and I decided to respect her wishes and feelings and let the day go by without fan fare.  Leukemia just isn't part of our lives as much anymore.  (Can I hear a "hell ya!!" for that!).  She, and we, just don't talk about it much.  We are just living our lives these days... working, going to school, having dinner, visiting friends, going to dance class...  She doesn't like to talk about it so we don't unless we need to prepare her for going to Seattle for treatment.


The only thing that seems to be of concern for her lately is her short hair.  She didn't care about being bald when she was around bald kids all the time.  Now she is finding that adults and kids relate short hair with being a boy (even if she is decked out in head to toe pink) and this makes her sad.  But luckily not too often...


** SOPHIA **
This blog is great for recording Madelyn's progress, changes and treatment... but Sophia has lots changes going on too.  She is a special little girl.  I have started a personal journal for Sophia so I can record her progress as an individual.  She is a funny, energetic, spunky girl and is an amazing support for her sister.  They are truly best buddies.  They play for hours together. You may see more pictures of Madelyn because this blog is dedicated to recording HER journey and MY reflections.  But don't worry, there are just as many pictures and words being recorded for Sophia...

... watching the trains in downtown Seattle ...

... downtown Seattle piers ...

... being model fabulous fashionistas... 

... Lunch at Spaghetti Factory ... 

Phia taking a break in the middle of the hall in our hotel.  

Riding those everywhere is good exercise.  I need one...

Riding the bull and reindeer down the hall to the Oncology Department.

Very smooth, tear-free accessing.

Waiting for the doctor.

Drawing while waiting for chemo infusion and nasal wash.

Surprise, surprise... Peter has to give it a try.  

Riding bull and reindeer out of Oncology.

You knew this was going to happen.

Remission Day Celebration

Thanksgiving Day will be a very difficult day for me.  I have been thinking of this day for about two months now.  November 24th is the one year anniversary of Madelyn's diagnosis.  It's the day six doctor's filed into our hospital room, sat down in front of us and the walls crashed in.  All I remember is their faces, lips moving, but not the sounds coming out.  After I heard those words - Madelyn has Leukemia, cancer of the blood - all the sound disappeared as I watched their mouths move and felt the river streaming down my face.


Peter and I have been thinking about how best to worship, how best to be thankful and solemn this upcoming Thanksgiving.  We have thought about involving all you - our loved ones, our dear ones.  But we have decided this Thanksgiving will be for us.  Silently, respectively and with our family.  Peter and I believe great strength and goodness comes from fun and celebration.  November 24th will not be a day of celebration for us but truly a day for thankfulness for our many, many blessings.


We do, however, want to celebrate this journey we've been on this year.  So mark your calendars people.  December 23rd.  That's right two days before Christmas - we received the best Christmas present anyone could every dream of.  We were told that our newborn baby girl - who somehow turned 4 1/2 years old overnight - who had cancer and had been through hell for 28 strait days - was in REMISSION.  We are going to celebrate this day.  Remission Day.  This amazing moment in time where all four of us made balloons from hospital gloves and danced around the Oncology Department.  The day I burst into tears and sobbed uncontrollably of pure relief and joy.  The day Madelyn has been fighting to maintain ever since...


At 11:00am we will meet at the bath house at Washington Park in Anacortes.  We will all walk together to Green Point where we will have some soup and hot coco together.  At noon we will launch gold balloons in the air.  12noon on December 23rd was the day the results of the Bone Marrow Biopsy came back indicating she was in remission.  Gold is the color representing pediatric cancer.  We will be collecting donations of three kinds.  Choose your donating, good tiding poison:  


    1.  Money for the N Ave Beach Restoration Project


    2.  Money for Seattle Children's Hospital


    3.  For any of you knitters out there, instead of money think of donating your time making warm        hats.  They are always needed for the gorgeously bald and fabulous kids (little and teenagers) frequenting the Oncology Clinic and Inpatient unit.  We will personally deliver them just a few days later.


This will be a moment in time you can celebrate with us or at your own home wherever you may be...  If you can't join us in Anacortes, celebrate Madelyn's Remission Day at home with a gold balloon launch of your own.  Remember the balloon is bio-degradable, but in most cases ribbons are not. Think of using an organic string or no string at all... and most important... SEND ME A PICTURE :)


RSVP to lisa@kuhnlein.com.

October 13

Madelyn had a big chemo day scheduled on Monday.  I was anxious for her to proceed with her chemo - I do not like delays.  Not because they disrupt our lives, but because her chemo is important.  Those toxic chemicals are killing the beast and the worry of relapse is constantly on my mind.  It probably will always be.  For the rest of my life.


Her counts were good.  They have returned to Madelyn's "normal" ... meaning she is not showing signs of being sick... and she is certainly feeling and acting that way!  Sophia and Madelyn both have been so happy walking off to school this week.


Hem  36.9     Plat 164     WBC 2.0    ANC  946


She went to The Sleepy Room for chemo in her Central Nervous System via spinal tap.  While in there they also gave her the annual flu shot.  I was surprised and very happy that she was able to get this.  Most cancer patients can not receive regular immunizations so I assumed no flu shot either.  As you know, cancer patients immune systems are depressed and introducing these potentially deadly  diseases is well, not good.  Peter and I are very, very pro-vaccination.  We have a Global Village mindset - each vaccination our children receive doesn't just protect them it protects the worlds children.  We had Madelyn receive all her Kindergarten vaccinations early, with doctor's approval, when she was four.  I am so happy about that decision now...


She will not have her regular steroid pulse this week.  The steroids can cause the flu shot to be ineffective so she will have the five days of steroids starting next week.  She had her usual Vincristine infusion and we are now waiting to see if she has any pain from this.  It is to be expected with the Vincristine chemo... but last month she did not need any oxycodone (pain meds) at all.  We'll see what this week holds...


Peter and I decided this summer that each of us would take a week vacation on our own.  A little re-couping time.  Peter went climbing in the Bugaboos with his friend Jim Thompson in August.  I will be heading to my old town New York City on October 24th.  There is a big annual photography conference, I will be visiting one of my best friends and gallery hoping.  I am really excited.  Peter will be heading up the home front on his own...

October 5

Monday afternoon Madelyn started running a low grade temperature.  The fever continued until Tuesday morning and she was acting sick - so we called Children's.  They told us to come in as soon as possible... let me tell you those are NOT fun words to hear.  Madelyn and I packed up for a inpatient stay, put her Elma cream on and headed south.  Sophia was also running a temperature so she and Peter stayed home.  The fevers didn't surprise us as two parents from school contacted us and her two best friends were also sick.  


I hate, hate, hate these reminders of the danger Madelyn lives in.  I hate cancer.  It was a long drive to Seattle.


It looks like she will be ok this time around though.  As soon as we arrived we were ushered back to a room, her port was accessed and was immediately evaluated by an Oncologist.  She was given some Tylenol and received an hour of fluids.  We are not allowed to give Madelyn Tylenol unless instructed to by an Oncologist.  They need to know when a fever is presenting itself.  Her blood was drawn for a CBC and blood cultures.  She also gave a urine sample.  Then we waited for her blood cell counts to come back...


Hem  39.2    Plat  146    WBC  2.7    ANC 2052


Because her ANC is so high her body is able to fight this off.  If she had a fever and a low ANC we would immediately be inpatient.  She would have received 48 hours of IV antibiotics and not released until she was 48 hours fever free.  Luckily, this didn't happen.


I decided to go to my sisters house in case her fever continued.  I was allowed to giver her Tylenol until 7am this morning and then if the fever continued we were to go back to the hospital. She was essentially fever free from the afternoon until this morning so we headed home today.  We are still waiting on the blood cultures and urine sample, but she is already noticeably feeling better.  My feeling is all will be well...