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.