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...

Sept 27

Madelyn had a CBC at Island Hospital yesterday.  Her numbers were right where her doctor wants them to be.  We're hoping it will stay just like that for her treatment appointment in two weeks.  


The accessing was by far her easiest one yet.  Very little anxiety at all!  It was amazing.


WBC 2.9    Hem 36.3    Plat 319    ANC 1507


She is feeling good and still bouncing with energy.  Both girls have been uber fun lately...


Please note:  Madelyn's blog now has an email feature.  You can sign up to get notified whenever I post... 


"Life is about living young, being youthful and enjoying yourself everyday because every day is important." ~ Paul Smith, designer

Sept 15

We had appointments Monday at Seattle Children's.  We arrived at 7:30am, accessing and blood draw at 8am then doctor's visit at 9am.  Madelyn was not able to eat that morning as she was scheduled for a spinal tap at 10am.  However, when we arrived at Children's Madelyn starting acting extremely tired.  As soon as we arrived they put us in a room.  After accessing she fell asleep on the exam table.  This is very unusual for Madelyn and her doctor noticed it.


Her blood counts came back with elevated white blood cells.  This is an indication that she might be coming down with a something as her immune system is "ramping up" to fight something off.  (Our white blood cells basically "gobble up" infection/germs...).  The way she was acting seemed to indicate that too...


She has continued to be a little off this week, but no major sickness has manifested.  It might be just a small virus, but Madelyn's immune system is suppressed so she feels it.


Hem 39.7    Plat 244    WBC 5.2    ANC 3557


Her spinal tap was canceled and will be rescheduled for four weeks from now.  As soon as she ate she started to perk up so low blood sugar might have played a part as well.  She still wanted to go to swimming lessons, but didn't have her usual energy and was a bit cranky.


She went to school the next day, but was asleep by 5:45pm that night.  Today, Thursday, she didn't get to school until noon.  She slept all morning.  


She still had her Vincristine (chemo) infusion and has started her pulse of steroids.  So we are seeing the emotional roller coasters...


Before I get to the images from the last week.... MORE BIG NEWS!!!  MADELYN LOST HER FIRST TOOTH!!!  And let me tell you she was excited.  I was told to text Amy and Pat, Janet and Mathew and Luke and all the Grandparents right away.  In true Madelyn fashion, she was eating a piece of cauliflower when it came out.

Asleep on the exam table.

Waking up when the doctor came in...

This is a wall in Oncology... just a fraction of the kids being treated there.  I think there should be a national "Hug a Pediatric Oncology Doctor or Nurse" Day.  Talk about one of the hardest jobs emotionally...

"Oh Mommy!  Check out that Giraffe!  Can we have it?"  Ummm... that would be No.

Checking out a painting in one of the hospital hallways.

Since her spinal tap was canceled we had a little waiting to do for swimming...

When Sophia comes with us, one of us goes in the pool with her so she can splash around too.

 

First day of school 2011.  Sophia is so proud to be going to school with sister.  There is no one better - in the whole wide world - than Madelyn.

Waiting outside to be brought in.  So excited.

Light the Night on Sept 24th in Seattle

I wanted you all to know that Madelyn's wonderful swimming teacher at Seattle Children's hospital will be walking in Madelyn's honor for the Leukemia and Lymphoma Societies Light The Night Walk.  When I told MJ this she was so happy.  She loves Tarrah and swimming lessons.  Swimming at the pool is the fun thing at the end of treatment.   She deserves something fun after being poked & prodded, examined, drugs being injected in her and waiting and waiting and waiting. 

http://pages.lightthenight.org/wa/SeattleL11/IWouldWalk500Miles

Light The Night Walk:
Taking Steps To Cure Cancer

Each year, in communities all across the United States and Canada teams of families, friends, co-workers and local and national corporations come together to raise funds for The Leukemia & Lymphoma Society's (LLS's) Light The Night Walk events and bring help and hope to people battling blood cancers.

Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help fight blood cancer.

Funds raised by teams and individual walkers provide:

• Lifesaving blood cancer research
• Free educational materials and events for patients and their families
• Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
• Comprehensive, personalized assistance through our Information Resource Center

Light The Night Walk events are evenings filled with inspiration. During this leisurely walk, walkers carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to cancer - thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer.

We are Taking Steps To Cure Cancer! Join us!

• Click here to register now to become part of Light The Night 2011
• Click here to find a local team or create your own team.
• Need to find your most convenient, local walk site for time and date information? Click here.

Quick facts about Walk night:

• Illuminated balloons, Light the Night T-shirts and a wrist band entitling walkers to enjoy food and refreshments are provided to all walkers who become a Champion For Cures by raising $100 or more to help fight blood cancer.
• The Walk is done at a leisurely pace and takes less than an hour to complete.

August 26

Hi everyone!  We are enjoying having nothing to report these days!  No news on this blog, is good news.


Yesterday Madelyn had a CBC.  Our first visit to the Cancer Care Center at Island Hospital!  No drive to Seattle!!  It was wonderful.  The nurses we worked with were knowledgeable, helpful and caring.  They had no troubles listening to Madelyn and accessing her exactly how she wanted it done.  They asked me if there was anything they needed to know about how MJ liked things done.  I said "oh you ask her.  She can tell you."  Somehow though, I still started to chime in about this and that.  Madelyn turned to me with her little attitude chin swing and a roll of her eyes and said "Mommy, I can tell them."  "Oh yes, yes, your right honey you tell them."  And she did.  


A super big thank you to whoever that caring, giving man is who anonymously donated $50,000 to the new Cancer Care Center at Island Hospital... and alllll the donors that are making this new facility possible.  We need it.


Madelyn's CBC results came back so fast - in about 15-20 minutes - and they faxed our Oncologist directly at Seattle Children's.  She is still good and holding steady right where they want her:


ANC 1000     RBC 38.8    WBC 2.2 (up quite a bit from last)    Plat 348


Madelyn has continued the one week of not feeling good and three weeks of feeling just fabulous.  Seriously, we have not seen her this good in a couple years.  It makes Peter and I so incredibly happy.  The one week of not feeling good comes from the steroids, constipation from the chemo and pain from the chemo.  It lasts about seven days.


In emotional news... this week I had an MRI.  When I was 19 years old I had a bone tumor on my knee.  I had surgery immediately after it was found and the surgery revealed the tumor to be benign (non-cancerous).  There wasn't a lot of time to be worried... although my Mom and Dad might say differently...


Well the site of that surgery has been bothering me for a few months.  Luckily everything is fine.  The results of the MRI were negative for new tumor growth.  The surgery was almost 20 years ago so it is probably just going to bother me a little for the rest of my life.  Our bodies aren't really meant to be cut open.


The MRI was hard for me though.  I do not sit still well.  Laying there for 30 minutes was torture.  It also gave me too much time to think about MJ.  I laid there and cried.  Cried about all that she has gone through and how I just couldn't do it.  She is so brave.  I know we say it over and over and over again... but laying there I realized I couldn't do it.  I am an awful patient.  The MRI brought back all these awful memories of being diagnosed.  That blur of an evening driving to Seattle after Dr Olmstead told us the suspected Leukemia.  My moments of absolute sobbing, confusion and worry.  Our 10 day inpatient stay learning about caring for a child with cancer.  Getting used to the word cancer being so intimately part of our lives.


Then after the MRI and the crying, I went to the beach to find Madelyn in her underpants and swimming in the ocean laughing.  

August 18

Madelyn had her monthly appointment at Seattle Children's Monday.


Please re-read the most important line of that last sentence.  Her MONTHLY appointment.  Send us some big "oh ya's!", "you go girls!" and celebration dances our way. MONTHLY!!! We are a family again, living our life in ANACORTES (not Seattle) and returning to a somewhat normal routine.


She will have monthly appointments for CBC's, doctor visits and chemo in Seattle. We will give her chemo every night orally.  Then, there will be in-between CBCs (complete blood counts... to see how her immune system is doing) at Island Hospital here in Anacortes. All usually occurring on Mondays.  


So Monday she had her Vincristine infusion (chemo) and started her Dexamethazone (steroid).  So this is our hard week.  Pains, crankiness, emotional ups and downs and trouble sleeping.  But I will take it for the three weeks of absolute Madelyn bliss we have experience the other three weeks.  She is feeling good.  Not just good, but better than we have seen her in a year and a half.  Energy.  Happiness.  No tantrums.  She is so fun. 


At her appointment her Hematicrit and platletes were normal.  WBC and ANC a little low, but still within range of what our doctor wants to see.  WBC was 1.3 and ANC 928.  No changes to her chemo.  No increase in the weekly Methotrexate chemo dosing.


She said goodbye to the apartment on Monday too.  We are all a little sad to see it go, but I hope we will never ever, ever... EVER... need an apartment in the city again. It was our mini-home with lots of wonderful memories.  We loved the location (right next to Magnuson Park and the Burke Gilman Trail), the feeling of it, the memories (bad and good) we had there.  When we were released from being inpatient at the hospital - we went there.  We had Christmas during Induction (the first hard month) there.  I will never forget what that felt like.


She is in low-dose chemo mode now though.  So EVERY little thing makes me worry about relapse.  Every pain, every bruise.  I guess this will be my mental state for the next five or so years though.  Get used to it, right? Ugh.


Madelyn starts Kindergarten in just a few weeks.  Hard to believe ... Kindergarten.  I am filled with such angst about the return to school in the fall.  It is Madelyn's natural environment... people, kids, activity, talking, learning, opinions and sharing... but it will also be filled with germs and all those winter time flu's and cold's.  Hopefully, NOT filled with any major diseases that could be very, very hazardous for MJ... like chicken pox, whooping cough, etc.  Her immune system will still be suppressed so she won't be working on a full germ-fighting tank.  It's inevitable, I know, but I'm not looking forward to that worry and rushes to the ER.  I'm sure they will occur though...


Ok, now for something fun... more images from Switzerland!!

swimming at Lake Zurich

on the bus with Grandma and Grandpa

strutting her stuff after her purchase at Franz Karl Weber (big toy store in Zurich) thanks to Grandma and Grandpa

horsing around at the chocolate store

lots of these were consumed by all, but especially Phia loves her Bratwurst!

Sleeping, very uncomfortably, in the stroller after a long, hot day in the city.

evening dinner at cousin Bettina's

We stayed at Bettina's home for the first week of our trip.  

Sophia watching the elephants at the Zurich Zoo.

MJ heading down a slide with Thierry.

Napping during lunch at the Zoo.

Wiped out after the Zoo.  It was hot that day.

at the beach with Bettina

Nastenka and Tiziana

During the family reunion everyone went to visit their Uncle's beautiful old home.

The family walking to their Uncle's old house.

Walking to lunch with Peter's cousin Christian's family.

Playing games with the cousin's.

Beautiful Sara.

Peter's cousin Christian.  We stayed with their family during the second week of our trip.

The cousins taking a break from a long day in the sun and swimming pool.  Pingu is the best cartoon for kids who don't speak the same language.

The girls sitting in the gondola looking out over the valley.  They loved the gondola ride.  They said they felt like they were going into space.  This was in the Vallis where we rented an apartment during the third week of our trip.

Swings at the top of the gondola.  Then we had lunch.  The girls made me sit at a different table during lunch though.  They said my Swiss dish with lots of cheese was too stinky and Phia started gagging.

On a little hike...

Peter playing with the girls at the Haupbahnhopf (the big main train station in Zurich).

Our new cousin... baby Nico.