The Last 10 days

Saturday was my Moms birthday and we had a great meal planned and a cake made, but by 4:30pm Madelyn had a fever.  Blast!

I just knew she was going to be fine.  When the Oncologist called I said "soooo... we are kinda old hat at this... this is what I'd like to do... I want her to go to Island Hospital.  We are not driving to Seattle tonight.  Could you call ahead to the ER and request all the tests and prepare them for our arrival?"  The doc was great.  She did and we went to Island.  We were there until 9:30pm and then discharged with a diagnosis of a cold and ear infection.  But only after she had been poked, prodded and forced to wait for four hours.  Her counts were excellent, RSV negative and Influenza negative.  The doctor in the ER gave her some IV antibiotics to kick start the ear infection treatment and we were sent home with a prescription.  

Nice birthday dinner, eh?  Well, I ended up having a Birthday Dinner Take 2 the next night and it was nice because my Aunt, Mom's sis, could come.


SO!  We begin our last 10 days of chemo!  I thought for the next 10 days I would take a look back over the last two years.  Each day I will post images from our two year journey.  

Feb 1st will be her last day of chemotherapy!  Again, we are asking people to mail a card or a picture to Madelyn and Sophia with hopeful arrival day being Feb 1st.  Email me if you'd like to participate!  lisa@kuhnlein.com

Here are the first four weeks; November/December 2010:

 

Day 1: out for her first IV Pole Walk and getting ready for her 

first bone marrow biopsy and first lumbar puncture.

Day 1: baseline echocardiogram

This precious thing has cancer???

Day 4:  visit with sissy!

Day 4: showing off her new port-a-cath.

She did a lot of this during her first 10 days inpatient at Seattle Children's.

Day 6: watching cartoons.

Day 11: first full day OUT of the hospital and exploring our new apartment in Seattle.  Look at my beautiful, 4 year old girl...

Our apartment building a mile from Children's hospital.

Sophia so happy to be living back with us again.  Those 10 days separated from her family at 2 years old were confusing and difficult.  She wouldn't let us out of her sight for weeks.

During our first visits to the Hem/Onc clinic at Seattle Children's, Child Life Specialists helped in Madelyn's adjustment to her knew life.  Teaching her what was happening and why and accompanying us through this foreign process.  

Madelyn is listening here, but has that look of 

"whatever woman... basically you are going to poke me and it is going to hurt."

3 weeks into treatment and she is starting to show significant signs of the month long steroids and intense chemotherapy treatments.  Cheeks and stomach ballooning, hair thinning and she is having trouble walking.

Trying to have fun at our family Christmas get together... but reallllllly not feeling well.

Our plans for Christmas changed quickly, but we all got together in Seattle.  

3 1/2 weeks and MISERABLE.

Another lumbar puncture.

Jan 3rd and 30 days....

2012 was a very special holiday season... both Peter and I are having a hard time deciding to take down the tree.  We had 16 people for dinner at our place on Thanksgiving, 20 people on Dec 22nd (my family) and 12 people on Dec 24th (Peter's family and his birthday dinner)!  We also had three Nutcracker performances (Madelyn), the Winter Celebration ballet performance (Sophia), cookie baking marathons, Christmas parties, caroling, a skiing trip to Leavenworth ... and not to mention Santa!!

This is the first day I have felt like I can, somewhat, breathe.  

I say "somewhat" only because poor little MJ is feeling badly from her chemo today.  She had her infusion on Monday.  When she feels bad, I just can't help but feel anxious and sad.

But I am happy to report that I have NOTHING to report!!!

She is still doing well and continues to inspire us daily.  She is the reason we try to make every single day a happy and loving one with lots of trust and laughter.

Man oh man.  What is this joyous, energetic, vivacious girl gonna be like when she isn't on daily medications???  Each drug has listed either "can cause dizziness" or "may cause drowsiness;" not to mention, "can cause nausea" and "may cause belly upset."

Dec 3rd counts were good with no chemo increase, but steroid increase due to growth.

Hem 38.4    WBC 1.8    Plat 213    ANC 1055    ALT 90

It was a really hard week.  Some "Hard Weeks" are better than others and this one was a particularly bad one.  She stayed home quite a bit...

Monday Dec 31
Hem 37.3    WBC 1.9    Plat 217    ANC 1074

She is feeling poorly this week, but much better than the last go around.  Emotionally she is ok (not herself, but ok) and she is having quite a bit of jaw pain, back pain and leg pain (all normal from the chemo infusion).

The exciting part of this month is that we are officially 
COUNTING DOWN to THE END!!!!!!!!!  

Wow.

I haven't figured out how I feel about all this... other than straight-up overwhelmed.  So I am going to force-ably focus on making it special for Madelyn.  We've made a large countdown poster for the house and we are asking people to help make Feb 1st exciting.  If you could please mail a picture or a card to BOTH Madelyn and Sophia and congratulate them on a battle well fought and won!  The goal is for your note to arrive on Feb 1st - her last day of chemo!  We'd love for them to be overwhelmed with love and congratulations.  As you know Madelyn is our superhero and Sophia is her strong, super supportive side kick.  If you don't have our address, email me:  lisa@kuhnlein.com.

We don't feel like we can have a big party on Feb 1st because she won't be feeling very good.  On January 28th she will have her last dose of Vincristine, her last spinal tap to put Methotrexate in her central nervous system and she will begin her last pulse of the evil Dexamethazone (steroids).  During this "sleepy room" visit she will also have her end of therapy Bone Marrow Aspirate where they will bore a large needle into her hip and extract her bone marrow.  That marrow will then be tested for any signs of remaining Leukemia.  I know, its amazing that it could still be there after 2 1/2 years of chemo but Leukemia cells are sneaky and know how to "hide."

Shortly after chemo ends we have a celebratory trip to Hawaii planned to relax and have fun together!  Then on Feb 22nd she will have an operation to have her Port-A-Cath removed from her chest. March 4th will be her first post-treatment follow-up visit which will include a standard echo cardiogram to double check her heart functions.  It will be analyzed against her beginning treatment echo to make sure the chemo has not damaged her heart.

For her January 28th bone marrow aspirate we are insisting on special testing.  Madelyn's protocol only calls for the marrow to be analyzed under a microscope.  We are asking for a more sensitive measure - one that checks for MRD (Minimal Residual Disease).  Here is the reason why:  if Madelyn were to go off treatment and her leukemia came back it would come back with a vengeance;  her fight would begin again and would be much, much more difficult.  She has suffered enough.  I do not want her to go through that again.  Ever.

Madelyn was in remission five weeks after treatment began and all 800 days of chemo since were solely to guarantee she stays there.  Scientists know, unfortunately through trial and error, that residual disease can remain in the marrow after remission is achieved and if relapse occurs it is much more difficult to eradicate.

If they do find Leukemia cells in MJs bone marrow, in these very low percentages that MRD testing provides, we will be entering uncharted waters for our Oncologist.  There is no standard protocol for this situation.  

SO. BE. IT.  

Our Oncologist, Dr Jessica Pollard, is not fighting us on this request, but simply supporting us and letting us know what decisions need to be made.

With that being said... I am keeping my mind and my heart certain that we are truly at... 30 more days...

Front of our Christmas Card 2012:

The MacDonald/Kuhnlein/Greenawalt/Jarnagin Cancer Marathon Cheer Squad.   

Our friends Kimmie Schelling, Eric Schelling and Joel Schelling 

all helped us execute this photo on Thanksgiving.  

Our dearest Ashley Schelling is with us in the photo.

Thank you so much special people!!

Photo by Kimmie Schelling.

Photo by Kimmie Schelling.

Here is the full Thanksgiving crew.  

We were only missing one of my sisters - Kim Jones and her family.     

... don't worry the Christmas photos are coming... they'll be ready in... ummmm... June....

Nov 24

On Nov 24th two years ago my girl was diagnosed with cancer.  Peter and I sat in the middle of five doctors as they told us Madelyn had Leukemia.  It was the most horrible moment in my life.  It was the day before Thanksgiving and we had our turkey dinner at Seattle Children's cafeteria the next day.  We have all come so far in the last two years... but especially Madelyn.  My fear is still there, daily, but it is submerged under years of experience and a positive prognosis.

We are officially counting down now:  68 days until Madelyn is off chemo!!

68 days!

Her last appointment at Children's went well.  She had a spinal tap with her infusion and both went smoothly.  Her counts continue to hold steady:

Hem 36.4    Plat 214    WBC 2.0    ANC 1142

No chemo increase.

While she was asleep she was supposed to receive her flu shot.  However, as she informed me as she was being wheeled out, "Mama, you said I would be asleep and I wouldn't feel the shot!  I was awake! I felt it!"  (She had woken early from the anesthesia).  "But... it didn't hurt so its ok."

She didn't have too much pain the week after her infusion, but had a pretty rough time with the steroids.  I spent most mornings sitting in her classroom.  Three (possibly - we hope, we hope - just two) steroid pulses to go!

Although it is Thanksgiving weekend, I have been wanting to share with you the amazing Halloween dinner my mom prepared for the girls.  I mean, wow.

First year we were able to take the girls ourselves to the downtown Trick-o-Treat.

My little kitty.

Witches Brew drinks.

Demolishing Grandma's cheese dip formed in the shape of a pumpkin.

Broom stick.

Spaghetti.

Bread Bones.

"What?"

Copy Cat... er, Copy Kitty.

End of the night reading with Daddy :) 

Oct 16: DUDE... Three More Months!

No news is good news!

Madelyn’s counts have re-stabilized and she has remained in that happy 750-1500 ANC-zone ever since her last steroid pulse.  Phew.  Those 10 weeks of low counts were very, very stressful.

We have ALL been busy with life for the last three weeks:  finishing the renovation of our attic (complete with permanently installed disco ball), re-envisioning KP Studios and most importantly… adjusting to life as schedule and activity navigators for the Chief Executive Officers of Kuhnlein, Inc.  Wow, soccer twice a week, dance, nutcracker rehearsals and, well, upon request from Sophia, more dance (that’s right 2 dance classes for our four year old prima ballerina).  My feet are running as soon as the first CEO shuffles into our room in the morning saying “can I have some milk.”

But here’s the thing though:  my heart is soaring these days.  My two girls are rockin’ life.

Madelyn is in LOVE with her new school, Mt Erie Elementary.  She loves everything about this new adventure.  She is much like her Mama… always excited about the new experience.  New place, new exploration, new facts to learn, new systems…  in fact the other day she said to me:  “Mama, we need to GO somewhere.  Like, you know, stay in a hotel.  We sometimes go places, but usually we are just here in Anacortes.  I get bored with it always being the same.”  Love it. 

It is never a problem getting her to school.  She wants to be there even during steroid week when she is crying and scared… when she doesn’t know why she is crying scared… when she is tired from no sleep the night before… when her belly hurts from 4 days of constipation… when she is in pain… she still wants to be at school.  She loves learning how her new school works, meeting new people, recess (with a playground!) and is enjoying having real assignments, tasks, responsibilities and subjects (reading, math, science, music, library).

And Sophia!  My, my she is just thriving.  She is defining school for herself this year; she is spelling her name; she is un-abashedly letting her opinion be known and slowly releasing apprehensions;  she swam the length of the pool with a noodle All By Herself and the glow on her face filled everyone around her with light; she is learning her power and wielding it; and she has discovered her own passion, dance.  I am so proud of her and I can’t stop staring at her!  I know I have only days and minutes left of her littleness. 

We were at Seattle Children’s on Monday for the usual:  counts, exam, meeting with Oncologist, chemo infusion and, the best part of the day, swimming lessons.  We also spent the afternoon with MJs Leukemia Buddy Riley who is also 6 ½.  During Riley’s infusions the girls did crafts, watched movies and were able to have lunch together in the cafeteria.  The afternoon involved a lot of giggling and smiling despite the tubes, IVs, nurses and medicines.  After Riley’s 4 hour blood transfusion we went out to dinner at Madelyn and Sophia’s favorite Seattle restaurant, Boom noodle.  Finally as we were slowly making our way to the car to drive home  to Anacortes, MJ, Phia and Riley were running around squealing and being chased by The Tickle Moster (aka Peter).  Mid-sprint, with a huge grin plastered from one side of her beautiful bald head to the other, Riley yelled “Best Day Ever!”  I said to her mom, “don’t you just want to broadcast to the world – look at her – look at my beautiful, fighting, giggling machine – she had cranial radiation, chemo infusions and a blood transfusion today.  Look At Her!  Riley is LIVING this moment.

Ok, one last thing.  We had a long discussion with the Oncologist about… not sure I can write it… January 31^st…  Off Treatment…  End of Treatment…  Last Chemo Day.  January 31^st will be a new holiday!  Party!?  Celebration anyone? Hmmmm….

Madelyn will continue with her oral chemo that she takes every day until January 31^st.  Her Seattle Children’s appointments will look like this:

Nov 5 – spinal tap and chemo infusion

Dec  – 3  chemo infusion

Dec 31 – chemo infusion

Jan 28 – chemo infusion, spinal tap and bone marrow biopsy

Jan 31 – last day of all chemotherapies including steroids!!!! as long as the Jan 28^th bone marrow biopsy comes back negative for Leukemia

Two weeks after the bone marrow biopsy – her port-a-cath will be removed via surgery

She will continue with her neuropathy medication for two months and will continue with her antibiotic therapy for three-six months depending on how quickly her immune system rebounds.

Then… CBC and exam every four weeks for a year.

Wow, 2 ½ years later….  This is really happening…

Madelyn's first grade photo.

Image courtsey of Firefly Images.

And here she was two years ago lying in the hospital bed.  

She had just been diagnosed with Leukemia.

Wow.

Sept 10 roller coast update

The CBC came back as expected during a dexamethazone week.  Inflated numbers:

Hem 39.3    WBC 3.1    Plat 202    ANC 2,661

So she will re-start oral chemo tonight and we will hope that her body will be able to manage it.

We check counts again on Monday the 17th.  

Her week is pretty good so far.  Not a lot of emotional ups and downs, just the usual post-infusion pain, constipation and insomnia.  She made it to school today and hasn't wanted to come home!

Here are some pictures from the first day of school.  Man did she LOVE it.

Sophia's backback is "just sooooo heavy Mama."

she brought flowers to her new teacher

Sissy waiting at the bus stop for Madelyn.  (She is just out of dance class).

The whole fam was waiting at the bus stop. 

Sept 8 Roller Coaster Ride

I am behind on updating you all on MJ.  It has been a rollercoaster ride for several weeks.

On August 21^st her counts were good enough to restart chemo at 50% of her previous dose, but not quite what I was hoping for after 1 ½ weeks off chemo.  I was hoping for an ANC so high that they would restart chemo full strength… and then some. 

Ya, not so much.   ANC was 924.  Not so bad, not so bad.  But not dramatic.

Then Sunday August 26^th Madelyn had a fever.  101.5.  What a surprise!

It was too be a perfect Sunday.   My  sister, Jill (who is Madelyn’s namesake), and her never-a-dull-moment, fun family were here for a visit. The Jarnagin Quad, includes the sweet and individualistic Beckett Ray (8 yrs), the Tough (note the capital T) and yet oh so vulnerable Lucas James (10 yrs)  and the loveable Emmett (aka hubby).  My sister Jill is a little like Madelyn:  always accepting, always smiling, always ready to jump in and DO, always able to chat with anyone in any situation.  Plus my riot of a sister Jen drove up from Kirkland (this is who we usually stay with while in Seattle for treatment) with her hilarious and precocious boys.  AND THEN, the day was to be topped off with dinner at The Harrington’s!  We love this family.  We feel at home and “with” family with Amy, Pat, Brennan, Ryan and Megan.  Such the perfect weekend. 

And then a FEVER!?!?

  

Strait to Children’s Hospital for Madelyn and I!  Madelyn and I left at 10:30am, were at the hospital for 2 hours, discharged and drove all the way home.  Nice God Damn day.  My girl is SIX YEARS OLD!  She should be playing.  She should be eating too much ice cream.  She should be really tired from…. Riding bikes, being at the beaching, playing soccer with her cousins, splashing in the hot tub…. not sitting in the car, not from medications making her drowsy, not from CANCER.

The day, at least, ended on a good note.  My whole family and Peter’s parents were in the drive way waiting for us as we drove up.  All 11 of them waving and smiling.  It made both MJ and I super happy.  Then Amy brought over dinner for us.  THANK YOU, all of you for making a sucky day end on such a good note.     

Two days later she had another CBC at Island Hospital.  She was full on neutropenic.  ANC was 180!!!  What?!@#$  LOCK DOWN.  If she gets a fever now it is strait inpatient.

The clincher, was Peter and I had booked a short anniversary trip to New York.  We were only to be gone from the girls for four days.  My parents, Peter’s parents and Ashley were taking turns watching the girls for us.  Do we go?  It was so stressful deciding.  I talked to other A.L.L. Moms (Leukemia buddies) and I spoke with our doctor.  The doctor encouraged us to still go.  Ultimately, I used my gut to decide.  I somehow just knew it would all be ok.  Madelyn was fantastic.  Full of energy.

So we went.  And she was fine.  And probably they enjoyed themselves more having Lock Down in a different place than at home.  Lock Down is just the worst.  Peter and I had a good time in my old town and we were able to relax.  Our 10 year anniversary day was Koren Spa in Flushing, noodles in China Town, photo exhibit at Grand Central Station, MOMA exhibit, dinner and bar hoping in the East Village until 3:30am.  It was Peter's first time really spending time in the city and I had fun showing him around.  

Madelyn had a CBC on Tuesday Sept 4^th, one day before the first day of school, and it revealed she had rebounded again.  ANC 1049.  Yay!!!!!  She can go to school.

Madelyn could not have been more excited… mixed with that good kind nervousness... she really was on Cloud 9.  Peter went to MJs class at 3pm to read the class Chemo To The Rescue and introduce her class to Madelyn’s cancer.  (It’s a great book: 

http://www.chemo-to-the-rescue.com/images/newbook/Page1.html ).   We had planned to drive her home after, but nooooo, she wanted to ride the bus.  So Peter put her on the bus and I anxiously waited at the curb.

Dude, Mama was an anxious mess all day!  I was not seeing that comin’.    

Madelyn went to the first day of school and then she went to Seattle Children’s :(  I am so bummed that her first two weeks of school couldn’t have been during her good weeks.  The CBC Thursday revealed she was down again!  What the?  ANC 700. 

I am so worried and … All. Worn. Out.

People are often amazed at how much I know and how much I can remember about MJs counts, symptoms and treatment.  “You are so strong and knowledgeable.”  This my daughter… her LIFE … MY life… Madelyn and Sophia are my soul, not my patient. And yet I am powerless against time.  Waiting and worrying, waiting and worrying, waiting and worrying, waiting and worrying… 

Please, please make this the LAST five months of our journey;  Not the beginning. 

This coming Monday morning (Sept 10), during the apex of her Dexamethazone symptoms we’ll be going in for a CBC at 8am and then driving her straight to school.  Poor honey.  Welcome to your first week of school:  Emla cream, early morning pokies, late arrival at school, extra hunger, pain, emotional ups and downs, constipation. Welcome.

If her counts are up, which they should be as the Dexamethazone inflates the ANC, we will restart chemo again.  Hopefully this artificial boost will be what she needs to regulate.

I want my Madelyn to be six years old… not six years old with cancer.  September is national childhood cancer awareness month.  Trust me, I am aware.  

Aug 17 - chemo hold again

Madelyn went in to Seattle Children's on Friday (Aug 10) last week.  Much to our surprise her counts went down again!

ANC 699

Still high enough to get her Vincristine infusion and to have her spinal tap, but low enough to make the doctor want to hold her oral chemotherapies.  

Ugh.  Stress.

It has been a hard week for Madelyn.  She has been in A LOT of pain and has had constipation due to the more frequent use of pain meds.  She has also been experiencing more nausea, than is usual for her, in the last 4-6 weeks (none during her chemo hold).  The doctor explained that often the farther into Long Term Maintenance kids are, the more side effects seem to effect them.  That also explains why we are seeing trouble again with neuropathy in her feet and legs.  She is having trouble with bad dreams during the dexamethazone - she says tigers and snakes are trying to get her.  She is spending about six-seven nights out of the month sleeping with me and Peter is sleeping in the messy Princess Palace.  Her lumbar puncture's are also causing her more difficulty lately.  She is very discombobulated, having more discomfort and more headaches immediately following, and for a couple of days after, the procedure.  

We will be at Island Hospital bright and early on Tuesday next week to get another CBC.   We are hoping for another REBOUND so she can start chemo again!  

five more months... five more months... 

five more months... five more months...

Struggling...

Sophia coloring while waiting for Madelyn to feel better in the after procedure room.  Daddy is her coloring assistant.  "I need red now Daddy!"  

Still struggling... but so hungry from not being able to eat all morning.

In the infusion room having fluids and very cold after her procedure.

watching a little TV

"Sophia?  Earth to Sophia?"  (Watching Dora. 'Nuf said).

Starting to feel better.  

Eating an apple while she gets her Vincristine infusion.  She can taste the medicine as it is going into her port-a-cath... and it tastes "gross."

Aug 8

Finally... I have been able to update our travel blog.  Check out this totally cute pic's of the girls in princesses dresses in a real princess castle :)

http://milk-to-go.blogspot.com/

Aug 7 REBOUND!!!

So Madelyn went in for another CBC at Island Hospital on Monday.  First appointment they had open, 8:30am... we couldn't get there fast enough.  MJ too.  

And hooray!  Her counts have fully re-bounded.  Thank goodness, phew and celebration.  

Hem 33.7    WBC 2.1    Plat 252    

and ANC 1145  !!!!!

She couldn't get to summer school fast enough today.  If it wasn't for Sophia going through a "I don't want to go to school" phase, MJ would have been at the door of the San Juan Montessori at 8am going "open, open, open."

She restarted her 6MP chemo last night and will re-start the methotrexate following her spinal tap on Friday.  

The girls are super excited because we are going to visit my sister Jill's family this weekend in my home town of Port Angeles... Lucas and Beckett, my nephews, are just about as cool as teenagers in MJ and Phia's eyes...

Aug 3 Lock Down

I have been busy with lots of “me” stuff lately… Anacortes Arts Festival, a photography workshop in Colorado… and I have been beating myself up for not getting everything done that I need to or I want to.  Then I arrive back on the plane on Tuesday and get the bomb shell that Madelyn’s counts have tanked.  Her ANC is 288!  It hasn’t been this low since she was diagnosed and Delayed Intensification.  Everytime I start to get selfish there is something to remind me what my real priorities are for the next few years.

So Madelyn is in Lock Down.  Poor honey.  She understands why she can’t go out and she is ok with it… but she still wants to go to summer school, out to dinner, the playground.  Be a normal kid. 

We explain it to her like this:  Your white blood cells are your soldiers.  They fight against infection and germs.  You are supposed to have like 2,500 soldiers, but you only have 288 which is not enough fighting power.  So if you get sick you won’t be able to get better.

Madelyn’s doctors have stopped all her chemo until her counts recover.  It could be A) her bone marrow is just worn out after two years of chemo every day.  Or B) it could be that her leukemia is back (worse case scenario). 

This is a no brainer multiple choice.  A is our answer. 

She goes back in for a CBC on Monday morning.  Then we will see if the six day rest from chemo has helped.  If she still hasn’t rebounded they will continue the hold until she does… She is feeling great and has lots of energy.  That is a good sign I think.  She needs lots of good vibes, energy and prayers that she does NOT GET SICK.  No fevers, no fevers, no fevers…

July 19

On Wednesday July 18th we left Charles de Galle airport in Paris, France at 11am and headed home from a month in Europe.  We arrived in Seattle at 1pm on the same day and went to my sisters house.  I promptly fell asleep on her couch.


The girls both woke up at 1:30am.  Ahhhh, jet lag.


Seven hours later when our appointments started at 9am at Seattle Children's we were all startin' to drag.  


Madelyn's counts were low.  Still within the range that they want (ANC 500-1,500), but low for her.


Hem 34.8    WBC 1.8   Plat 216   ANC 747


Her liver toxicity was also quite elevated ALT 285, but within normal range for a little noodle with Leukemia.


We will anxiously await her counts at Island Hospital in two weeks and be a little more diligent about sickness.


So now we begin MJs Hard Week doubled with the difficulty of jet lag.  It shall be interesting...

Trip To Europe update

Make sure and check out MJ and Phia's travels in Europe.  So proud of my good little travelers...


http://milk-to-go.blogspot.com

July 17

Phew... all is well.  She had about two days of not feeling well, but rebounded quickly and no fevers!  Yay!  We are at Chales de Galle in Paris this evening and heading home tomorrow.  MJ has her Seattle Children's appointments on July 19 and then we'll finally be home.  Next week will be... challenging... jet lag + Madelyn's Hard Week.


More soon...


Lisa

July 12

Woke up to a bit of a worry.  Madelyn came into our room on our little boat in the canals of Burgundy and started to throw up.  She threw up twice and then went to sleep until about 9:30am.  She slowly started her day, but was not MJ again until 1pm.  We kept the day easy though with no excursions.  We quietly motored to our final destination Montbard, France.  


Peter and I are not quite sure what is going on, but have concluded she may be overdoing it a bit plus the chemo.  


Let's hope that is the case.  We have the pediatric oncology addresses in Dijon and Paris programmed into our phones just in case... will keep ya all posted...

July 3 / Zurich Kinderspital

We are with the Swiss Kuhnlein’s this week!  Always so much fun for MJ and Phia.   On Friday, Madelyn and I went to the Zürich Kinderspital for a CBC and examination with a Oncologist:

WBC 2.4    Plat 251    ANC 1,360   ALT 126

They are so wonderful at the Kinderspital;  we feel very comfortable there.

She had a few days of not feeling well when we first arrived in Europe, but I believe it was just a combination of the previous weeks chemo in combination with jet lag.  Her energy is good now and we are all enjoying ourselves in Switzerland.  She loves her cousins here.  We will leave for France the day after tomorrow and have a family vacation in Burgundy and the Loire Valley.

Waiting to be called back for accessing.

Who is this girl??  She looks so grown up in this photo!!!  Oh my goodness...

While waiting for Madelyn's counts to come back from the lab we went to the cafeteria for lunch.  Peter was in pie heaven.  They had a pie buffet with 12 different pies.  We would never see this at the cafeteria at home.