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.

August 4th

No big announcements on Madelyn's health this week... just her well being.  Starting Tuesday afternoon she was free of side effects from the dexamethazone.  She is back to feeling good and having wonderful energy.  Yay!  She has gone to summer school every day this week... walking way ahead of us to get there fast and on her own.

I wanted you all to be the first to know.. it is official!  MJ has enough hair to have BED HEAD!!!  We had a big Wooohooo about this and had to document it.  Check it out.  Rad.

She also discovered that she has her first, ever, loose tooth!! 

First real HAIR wash... (not a head wash) in about four months.  Again, rad.

Sunday evening we had a fun BBQ with the growing (yay!) Schelling clan.  Then we headed to the rock.  Climbing plus pink tutu's ... even more rad-ness.  Madelyn is a brave girl - you all know that.  But she is also fearless.  Not in a reckless way; in a quiet, calculated and focused way.  She loved climbing with Daddy.  And she did some seriously vertical climbs.

Helmet didn't quite fit... and she was pretty tired.  Phia ended up staying with me while MJ climbed.

August 1st

We are back State side!  We have been for about a week and half, but I am just now getting organized... well, sort of.  

It took the girls about three days to adjust to the time zone.  Then we headed down to Seattle on July 25th for her monthly infusion of Vincristine and check up.  Her counts were good, very good and she was looking and feeling wonderful.

Hem 39.8    Plat 265    WBC 2.9    ANC 1572

Her ANC is a bit high and if continues to go up they will increase her weekly dose of Methotrexate.  She has this on Mondays so Tuesdays she generally feels a bit "yucky."  For the next 1.5 years they are going to keep her immune system depressed so that the Leukemia has no place to live.  They want her ANC to be between 750-1500.

Did you notice, I said 1.5 years, not 2 years?  We thought it was 2 years of Long Term Maintenance starting at the end of Delayed Intensification.  HOWEVER!  It is actually 2 years starting at the beginning of Interim Maintenance.  So her chemotherapy with stop six months earlier than we thought.  She'll be done the first of Feb 2013.

After her infusion she went to a swimming lesson... still bursting with energy.  Then we headed to the apartment and I began packing!  We brought a small load home with us.  The end of this month we pack up and leave the apartment.  Hopefully, for good.  Our lease ends on August 31st.  For a few months we'll have CBCs every two weeks (which we can do as a day trip) and on her monthly infusion days we'll spend the night with my sister who lives in Kirkland.

This week, MJ has been feeling a little crummy.  The Vincristine has given her pains (legs, jaw) and the Dexamethazone (steroids for five days every month) gives her heart burn, crankiness, lower energy and big mood swings.  

She did go to summer school on Wednesday and part of the day on Thursday though!  She was so excited that she had her back pack on one hour before we left for school.  Which meant Sophia had hers on for an hour as well.

I have a ton of pictures from Switzerland.  It's a little overwhelming choosing what to show you all, but I thought I would at least start with her visit to the pediatric hospital in Zurich...

Having a mini-dance party in the middle of Zurich.  We are waiting for the tram to take us to the hospital.  She has her Emla cream on her port...

  

Being goofy... still waiting for the tram.  We have our bags with us because immediately following the doctor's appointment we jumped on the train to the French part of Switzerland.  We rented an apartment for a week near Sion, in a town called Nendaz.

As usual, she is a little nervous and scared while accessing.

Much happier with the needle out.  Here she is being examined by the doctor.

Happy and contemplative after her appointment is all finished.  Back on the tram heading to the train station.

Pillow fight on the train to Sion.

At the end of one of our hikes in Nendaz.

MJ riding in Grandpa's backpack at the end of the hike.  Sophia and MJ were both tired of walking...

Bungy trampoline.  

She says that next trip to Switzerland she wants to do paragliding... she saw a lot of people doing it in Nendaz.  She is so fearless.

Any trip with kids involves plenty of these ... lots of empty milk and alcohol bottles in the recycling...

There is a reason our strollers end up completely trashed...

Cousin Tierry.... more family pictures to come...