May 22

The Kuhnlein family has had a busy last few days!  Busy with happy, beautiful, sparkly, tiara, tutu-liciousness, cutiness.  

Peter, Madelyn, Sophia and I all setup for our annual Fidalgo Dance Works photo shoot on Friday evening.  The girls twirled ribbons, danced with wands and strutted their stuff in front of mirrored dancing halls while Peter and I setup backgrounds, taped down paper and setup strobes.  Saturday morning we dressed Sophia in her dance outfit and arrived at Fidalgo Dance Works at 8:45am.  Grandma Terry met us there.  Then tutu-chaos ensued.  Same scenario Sunday morning for Madelyn's dance photos and Grandma Harriet and Grandpa Urs were there to help and then usher the girls off to their house.  Peter and I photographed almost 300 cuties Saturday and Sunday for our local dance school.  We always enjoy spending time with these great teachers and adorable children.  

Sunday evening I excused myself a little early from the photo shoot and left Peter with the mothers, dancers and sequence.  I packed up the girls, got some food and hit the road for Seattle.  We arrived at my friend Shelly's house - aka Auntie Shelly - at about 8pm.  Sophia was conked out but Madelyn was ready to rock it.  (She had slept from 1:30pm - 5pm that afternoon on account of spending all day Saturday at the beach with her older cousins Lucas and Beckett.  She was Exhausted.  Please note the capital E).  Madelyn watched a special movie about the Loch Ness monster fable and Shelly and I hooted and hollered over some beautiful red wine.  (Yes, hooting and hollering is a good description for Lisa + wine).

It was an interesting night of "sleeping" with both girls and me in one bed.  3 am found me sleeping perpendicularly across the bottom of the bed as both girls lavishly slept spread eagle at the head of the bed.  We all awoke at 6am thanks to the dreadful, hateful, mean machine the alarm clock.  So (sigh) up and brush and deodorize and rush for a long day of waiting.

We waited through rush hour to arrive at Seattle Children's just on time. We waited for Madelyn's port to be accessed.  We waited for our doctor's appointment.  STARBUCKS.  We waited for Madelyn to be called for her spinal tap (no food in the morning is always extra fun).  Then Sophia needed to be RUSHED to the toilet.  We waited for Madelyn to come into recovery.  We waited for Madelyn to stop being dazed and confused - poor thing.  She was very discombobulated and cried for 40 minutes.  Then she had a bolis of fluids to help with headaches.  Yup, more waiting watching the fluid drip... drip... drip... Then we went to lunch. Including another RUSH to the toilet.  We waited at the pharmacy for medications not ready and prescriptions missed.  Then off to something finally fun for the girls!  Swimming.  The girls teacher was starting to get a little sick so we skipped lessons and just splashed around for an hour.  Last stop?  Another pharmacy run to get at least one last prescription they forgot.  The last two I will have to arrange to get filled here in Anacortes.

Due to the long weekend photo shoot at Fidalgo Dance Works Peter had to stay behind to finish the shoot and dismantle our backgrounds and gear at the dance studio.  My friend Shelly took a day off work to help me at the hospital - approximately 7:45am - 3:00pm.  It's always a long one.  I thought maybe Shelly would go to work after the appointments, but I could tell she was exhausted.  She told me today that she went home and drank wine and cried all night.  Which somehow made me feel a little better.  Maybe I'm not crazy after all!  Sometimes I feel like people listen to me or read what I have to say and think I am dramatizing.  After all, Madelyn is doing well right?  Look at her.  She is laughing and exuding heath... at least three weeks out of the month.  

It's one thing to read about sick kids or see videos about what they are going through.  It is a whole other thing to watch these kids at the Hem/Onc clinic.  And I see them.  I hear their cries and screams as they are poked, prodded and hurt.  I watch them unable to walk.  I see them giggle and move around attached to feeding tubes and IV poles.  I see them carrying their puke buckets.  I see them expand into little round apples or whither away from toxic drugs being pumped into their bodies.  All this to save their lives. Madelyn was there not so long ago and the reminders of her fragility are there.  She is doing well yes.  But she still has nausea, pain, heart burn, constipation, trouble with neuropathy and is taking chemotherapy every single day.  I am so sick of wondering, worrying and waiting.  Relapse is like a dark shadow following me around.  Knowing that it was hard for Shelly to see all this for one day is somehow comforting. 

I spoke to my doctor recently about my impatientience with the irrelevant, my easily agitated startle response and my inability to make real decisions.  I seem to only be able to deal with the now and extinguishing my life's little fires.  My doc and I decided two things.  I will increase depression medications for awhile and I will disconnect myself from some of my Leukemia support groups.  I have also made some decisions for me.  I decided to not feel guilty about our extremely long vacation next month.  I decided to ask for an exorbitantly large birthday present - which I am writing to you on.  And I booked an art photography workshop for myself sans kiddos and hubby.  Amen.

So listen to this... drum roll... no seriously...This week I have read a book of fiction.  I am on chapter 3!!!  I have not been able to read a book of fiction since Madelyn was diagnosed.  I've been reading about cancer (surprise there), writing, art, photography, parenting, cooking, wine... but anything requiring a suspension of disbelief...  Nope.  Haven't been able to get past page 15.  I am on chapter 3!!  

Madelyn's ANC was still running a little high even after last months chemo increase.

Hem 36.2    WBC 2.7    Plat 250    ANC 1863

So another chemo increase this month with a CBC check in two weeks to see how she is responding.  The doctor also increased her Gabapentin - the medication that is helping her feet and ankle neuropathy.  It seemed to help for awhile, but she was still having episodes of pain and difficulty running last month.

We are on day 3 now of steroids and it has been a good week.  Not too much emotional turmoil, only one day of crying as she went into school and she - sorry - has been pooping!  Yay for early Miralax dosing...  She even went to her baseball game on Tuesday night and could you  tell that my girl had just had a spinal tap to put chemotherapy in her central nervous system? An infusion of chemotherapy into her blood stream?  Nope.  Go Eagles!


A piece of big news.  A asked Madelyn's Oncologist when she would be done with therapy.  She game me an exact date!  January 31st 2013 we are going to be doing some major celebrating some where, somehow.  

Here are some pictures of Madelyn and Sophia from this weekend photography shoot at Fidalgo Dance Works:

Madelyn with her best bud Alaina Fowler.

Ummmm.  Ya.  So freaking adorable.  

This girl, Miss Alaina, has been MJ's best girl for years now.  Didn't make one difference to Alaina whether Madelyn was in the hospital, not feeling so good, bald or cranky.  Confusing, yes, but all Alaina wanted was her friend to play with.  Alaina has stuck by Madelyn and Madelyn by Alaina. I will treasure this picture forever.

Anacortes American

Madelyn was on the front page of the Anacortes American today!  Check it out everyone!  Sooooo cute....

http://goanacortes.com/arts-and-community/entry/cowgirl_bucks_cancer_cares_on_dude_ranch_trip

May 9

Madelyn was at Island Hospital on Monday afternoon for a CBC and ALT lab work.  Her counts are still where they want her to be... i.e.  the optimal immuno-suppression.  I am still waiting to hear how her liver is doing...


Hem 34.4    WBC 2.2    Plat 266    ANC 1,232


Platelets and Hematocrit are a little lower than usual, but still in the normal range.  ANC did not go down much from her recent chemo increase.  I suppose we'll be looking at another increase in a couple weeks.  She is definitely feeling the increase on Mondays.  (This is when she gets the double dose sometimes triple dose of chemos).  We have started routinely giving her Zofran (anti-nausea meds) the evening she takes this battery of pills and first thing in the morning.


Madelyn has been more tired than normal this week - for it being a good week.  It may be her new medication - Gabapentin - she started to take for neuropathy in her feet and ankles.  This should stop (we hope) after her system gets used to it.  Peter and I feel the Gabapentin (or Gaba Gaba as it is known in our house)  is helping though.  She hasn't complained of pain, hasn't had a falling episode and is noticeably running better.  


MJ was finally able to start Little League this week and in usual Kuhnlein fashion we were all there to cheer her on - including our close friend Ashley.  MJ is super, super excited about playing!  And for two people who don't know anything about sports Peter and I think she is pretty good (We don't know when the Super Bowl or World Series games are even on TV every year).  Man can she throw!  She's pretty good at watching the ball, she has no fear of sticking her mit out there to catch it and can really wack it!  I asked her if she wanted to go play with me the other day and she said:


"No Mama.  You and Daddy aren't very good at throwing the ball to me.  Let's call Grandpa Jim and see if he can play."  And so we did :)

duped

As many of you close to me know, I am part of an on-line support group of care givers of kids with ALL - Madelyn's specific type of Leukemia.  We all email information, questions, happenings, triumphs and disappointments.  Back in January I posted that a 14 year old girl Leann, after a heroic battle, had passed away.  I was so devastated for this family.  I had been closely reading and following Leann's story for months.  



http://madelynjill.blogspot.com/2012/01/jan-18.html


Well, today I found out Leann and her mother Karen were a fake.  This girl never existed.  It was this woman's way of getting attention.  It is a mental disorder called Munchausen By Internet.  


I am speechless.

April 23

The big, BIG news first:  MADELYN STARTING RIDING HER BIKE!  She went straight from scooting to riding (no training wheel please).  I can't tell you have unbelievably excited and happy this made Peter and I.  I can't wait for family bike trips!  Sophia, I'm sure, won't be too far off - she has to keep up with sis for peat's sake!  Madelyn is stinkin' adorable riding that thing.  Especially when she rides it to dance class complete with tutu.  


If you keep up with news in Seattle you probably heard the story about the "blue trees" in downtown Seattle by Australian artist Kon Dimopoulos.  He painted the trees around Westlake a bright blue (not harmful, water-based paint).  It was pretty cool.  Madelyn and I happened to stay in a hotel close by after her ER run last week.  We were walking by and she went right up to the artists helping and said "what are you guys doing?"  They told her and then she said "can I help?"  So in true Madelyn fashion she was part of an international art project.  By the time we arrived back at our hotel she was covered in blue :)  The artist and his wife sent Madelyn and Sophia a sweet note and package (with two stuffed Australian Koala bears!) saying thank you for her help.


http://www.kondimopoulos.com/thebluetrees/westlakeparkseattle/


http://seattletimes.nwsource.com/html/localnews/2017895829_bluetrees.html

Madelyn had her appointment at Seattle Children's on Monday...  i.e. she feels pretty yucky right now.. but that girl just keeps on going!  Her energy is low, she feels week, she is in pain and nauseated.  She has needed a nap each morning, but has made it to school around 9:30am or 10:00am.  Madelyn's school is a small, busy, bustling place.  There is always a lot of wonderful activity going on.  But if Miss Madelyn is tired well... she doesn't care one bit.  She pulls out a blanket and pillow, finds a corner and settles down for a power nap.  All of her buddies know she has a week of "not feelin' too good" and then she we will be back to being Madelyn.    


Her counts this week:


Hem 37.1    Plat 258    WBC 2.5    ANC 1362


They are pushing the chemo again- increasing her daily 6-mecaptopurine.  She will also start on a medication to help with neuropathy.  Unfortunately, it is starting to rear it's ugly head again.  She has been having ankle and foot pain and complaining of a feeling "pins and needles".  She has also begun falling more than is normal.  She asked me to make sure and talk to the doctor about it. So I made a note on my monthly list of questions and then asked Madelyn to talk discuss it without any Mommy involvement.  It was a pretty cute conversation and Dr. Jessica was impressed with how well and coherently Madelyn spoke about how it felt.


Other than that she is super busy being six years old right now.  Lots of tutu wearing, dance class going, horse drawing, swimming (like a fish) and getting very close to that "click" moment when reading starts to make sense.  (I am been feeling the need to brush up on all those vowel rules.  It's really hard to help her with reading when I don't even know why we say it like that!)  She is getting excited to start softball for the first time.  She got a glove and bat with Grandpa Jim last week.  And man, of man, does that girl know how to hit and throw the ball!  


Peter and I are beginning to think about the end.  I know, I know... it is still 10 months away.  But that isn't a year anymore!  That is only 10 more "bad" weeks.  I hope my heart will be able to take going off chemo.  The waiting, the watching, the hoping for no relapse.  

Here are some recent photos of my beautiful, strong, spunky, super fantastic, sparkolicious girls...

little Mia

Please send love and light into your world today. 

There is a Mama and a Daddy and a little brother waking up this morning to experience day 2 without their precious baby girl and their forever buddy.  It is a devastation I can not understand.  And it is tearing me up inside.  I can’t stop crying.  This could easily be our reality or our future.  Little Mia fought from age 2 until age 5 and now her family will fight to try and continue to live without her.

Please send strength to our oncologist, Dr Jessica Parker, and our wonderful team at Seattle Children’s.  They have been fighting for Mia too.  Pediatric Cancer includes days like these, but I am sure it is never easy.  I’m sure it always touches a raw place inside.

Rest in peace little Mia.

more ER runs

Quick update today... 


We had another ER run over the weekend.  Poor honey.  By 5pm on Saturday night before Easter Madelyn was screaming from pain in her ear.  It was exactly the same as three months ago coming home from Leavenworth.  I called the on-call Oncologist at Children's and they instructed us to go to the ER at Island Hospital.  Phew.  We were in and out 1.5 hours!  Yup, ear infection! Antibiotics were started by 8pm.  She was in bed by 9pm.


She is feeling great now and headed back to school on Tuesday.


It was a hard decision to send her back to school and come off Lock Down.  The Whooping Cough outbreak is still at epidemic levels in WA State, but the few cases loosely associated with the school were two weeks ago.  And we are all going stir crazy.  Madelyn and Sophia have both been spilling over in smiles and energy since going back.  We will still try and stay away from "people" places... but back to school is good for us all...


We went to Island Hospital on Monday for counts.  She is back to HER normal counts - the right level of immune system suppression. 


Hem 34    Plat 338    WBC 2.8    ANC 1397


ALT (liver toxicity) is on the rise again... we will continue to monitor that. 


Our next appointment is on April 23.  I hope I have nothing to report until then!

April 3 - bag was needed

Unfortunately, that packed bag was needed.  Darn it!  


Sophia's fever was gone and she was feeling much better by Friday, however, Madelyn was noticeably sick.  A fever of 101.5 presented itself Sunday morning so it was off to Seattle Children's ER for MJ and I.  (As soon as Madelyn gets a fever of 101 we have to head to the hospital).


We were in the ER from about 1:00pm until about 6:00pm.  They accessed her port, pulled blood for CBCs and blood cultures and two different instruments were put up her nose for viral tests.  We are talking wayyyy up her nose, poor honey.    Those tubes and swabs looked like they could have reached her stomach.  


Her CBC came back with an ANC of around 7,000 and WBC of 6.2!  Her little body was obviously fighting something big time.  I had never seen these numbers from Madelyn before and they concerned me so I asked them to talk to Oncology.  Poor Madelyn.  That talk resulted in another swab being stuck up her nose and seemingly down to her toes.  By this third nose swab / torture she was over it.  That girl knows how to scream when she wants to and boy did she scream bloody murder.  I did't blame her.


Mom's of cancer kids often get called Mom-acologists.  We learn a lot going through this process.  We learn a lot about the medical "stuff" but also gain the confidence to always ask questions, clarify and help make decisions.  I saw this in myself several times in the ER Sunday.  Here are a few examples:


Without being asked I immediately indicated that I didn't feel Madelyn's counts would probably be low because she just finished a five day pulse of Dexamethazone.  I thought a Whooping Cough test might be in order due to possible contact at school.


The amount of blood they drew from Madelyn did not seem enough to me for doing a CBC and blood cultures.  As they were leaving I asked them about it and they said we don't have orders for blood cultures.  I was sure this was wrong.  They called and yes there was a mistake.  The blood cultures were needed but were missed in the orders.


When I was speaking with the Nurse Practitioner in charge, Madelyn's IV pole started beeping.  Her bolis of saline was complete.  Without stooping my conversation, I turned off the IV machine alarm.  The NP said "I can't believe you know how to do that.  I don't know how to do that."  


The ER nurses and NP were all very nice to us and MJ enjoyed all the attention as usual.  She took a nap, had snacks and watched a little Thomas the Train on the IPad. 


We were released from the ER around 6pm but were still unsure whether we would be picking up some additional medicine at the pharmacy.  So we killed a little time reading books in the car and picking up dinner at the grocery store.  I decided it would be best to stay in a hotel that night as I wasn't sure what the blood cultures would show.  If they were positive it would mean heading back to the hospital for IV antibiotics and possible in-patient stay.  Plus I was tired.  I really didn't want to drive all the way back home.  I also didn't want to go to my sisters and bring MJs sickness to her family.


All the tests came back negative!  We heard some initial results that night (no meds to pick up right away) and the next morning blood cultures were negative.  She has a common cold.  Hooray for a cold.  


Even though it is stressful and exhausting it doesn't bother me at all to make these ER runs.  If it's nothing.  Again, hooray and I can rest easy.  If it is an infection that needs to be dealt with immediately, I know we got there are soon as it presented and we are in the best hands.  It is just a no brainer.


Tonight, Tuesday, she is feeling much better; just a little run down and no more fever!  She is also done with her steroid side effects and we have our Madelyn back!  As far as I go... Lock Down (due to Skagit County Whooping Cough outbreak), plus sick kids, plus lots of classic Seattle spring rain = ughhhhhhhhh.  Mama is feeling close to loosing it.  :)

March 29 - drama!

Madelyn had her monthly appointment at Seattle Children's on Monday.  It was a dramatic day.  There were two issues that were concerning Peter and I.  The first, was some pain in her arms and legs too far away from her infusion to be the chemo.  The second, being a type of sighing or gasping she does from time to time.  She describes it has having trouble breathing.  It sounds like "I need just a little more air in my lungs."  This has been going on for about six or seven weeks now.  We talked to our NP about it last week and decided to wait and watch.  It has definitely been making us worry the last couple weeks.


Our provider indicated the worse case scenario for both symptoms and the best case scenario.  The worst case scenario was a little like getting punched in the stomach.  The pain could be relapse in the bone marrow and the gasping being a relapse of cancer on her lymph nodes.  Our NP did a through examine including spleen and lymph node check and lung check.  Then we headed down for an xray.  She also ran a report on Madelyn's counts for about six months. 


Her counts are not consistent with relapse of the bone marrow.  Our NP told us (something I wan't aware of) that those platelets are finicky things.  If there is a downward trend in the platelets and an upward trend in the white blood cells, then they start to get nervous and order a bone marrow biopsy.  They felt the pain was probably just side effects of the chemo.  They told us to still watch and record the symptoms, but they weren't concerned at this point.  \


We didn't hear the results of the xray back until about 3:30pm - so it was a longggggg afternoon.  Thank goodness the xray was clear.  She said their next steps would be pulmonary tests and an EKG (i.e. a cardiac issue).  Our team thought, based on MJ's exam and on our description of the frequency and situations, that we should wait, watch and record.  So that is what we are doing now.  


What I love about our team at Seattle Children's is that they didn't say "this is what you have to do."  They said, this is what we recommend at this point.  If you get home tomorrow and you don't feel comfortable waiting - even for piece of mind - we can order those tests tomorrow.  Everyone we see in Oncology says "please call us at anytime with any question you might have."  I really, really appreciate this... 


THEN!  On the drive home, Madelyn and Sophia's wonderful teacher Tina called and said that a mother of one of the students had Whooping Cough (Pertussis).  There is also an outbreak of Whooping Cough in both Skagit and Snohomish Counties as reported by the health departments.  You might have seen it on the news.  There are a few infections that are super NOT GOOD for MJ to get and this is one of them.  Also chicken pox, H1N1...  If there is a known exposure to one of these it means straight to Seattle Children's for preventative IV antibiotics and monitoring.  Whooping Cough is usually more of an issue for adults because we don't know to be re-vaccinated.  The vaccination only lasts 10 years so most kids are covered.  Unfortunately, there is one un-vaccinated child at school so we will wait.  Luckily, Madelyn's wonderful pediatrician here in Anacortes reminded Peter and I to get the booster in order to protect Madelyn last year.  Madelyn too had the vaccination, but the trouble with her suppressed immune system is that those white blood cells are not firing with full cylinders.  So we are on self imposed Lock Down right now to be extra careful.  A few weeks at home in the grand scheme of "it could kill her"... is obviously no big deal and a no brainier for us.  If you read this and think, oh wow, I haven't been re-vaccinated... go and do it!  Any of the pharmacies can help you with that.  Keep in mind that once vaccinated it takes two weeks to take effect.  Also people can have Whooping Cough for 7-10 days before showing signs of sickness.


THEN!  Last night Sophia had a 103 temperature and other cold symptoms.  So now we are in wait and see mode for fever!  For most kids a fever is just uncomfortable and you wait it out.  That is what Sophia is doing and she is still, luckily, in a wonderful mood.  However if Madelyn gets a low grade fever it is off to Seattle Children's for us.  I decided to pack a bag for the hospital.  It is sitting in the hallway waiting for us.  I am sure if it is there, we won't need it.


MJs counts were:


Hem 39.0   Plat 283   WBC 2.9   ANC 1,600

March 15-20 Make A Wish trip

As most of you know Madelyn’s one true wish was to be a cowgirl.  To ride horses, take care of horses and to live on a ranch.  The wonderful people at Make A Wish made this happen for my girl.  We feel so thankful to be given this special moment in time.  As we drove away from the ranch on Tuesday... down the bumpy, dusty road to the real world... Madelyn was very, very sad.  Sophia started crying.  She didn’t want to leave Scooter, her horse.  Madelyn wanted to keep living at the ranch.  She asked if we could come again, but stay two weeks next time...

Now to the beginning of our trip... when we arrived at SeaTac airport on Thursday morning we were greeted by our own personal TSA agent, Julie, and our Make A Wish volunteers, Karen and Lora.  We were then checked in by the Alaska Airlines manager personally.  He took care of all our bags and gave special passes to Karen and Lora so they could accompany us to the gate.  We then headed off to our own line at security with our TSA escort.  We were then delivered to the Alaska Airlines lounge with buffet of food, beverages and a nice waiting area.

When it was time to board our plane, an Alaskan agent met us and brought us to the front of the line.  She handed us some toys and activities for the girls.  The agent then announced over the speaker system, that Madelyn Kuhnlein was on her Make A Wish trip with her sister Sophia and parents.  She explained that we were off to Tucson, AZ so Madelyn could learn to be a cowgirl on a dude ranch and that she would also be celebrating her 6th birthday while there.  Everyone at the gate cheered and clapped as we entered the gangway.  Madelyn and Sophia beamed and I started to cry.  

The flight was terrible for me. So bumpy!  I was nervous and sick to my stomach.  Peter sat with the girls and I suffered in silence.  Near the end of the flight the turbulence finally abated  and Madelyn came over and snuggled with me.  She charmed the nice ladies sitting next to me with her forward personality and easy smile.  She was absolutely certain they wanted to hear all about her various stuffed horses. The stewardesses announced again Madelyn’s trip and birthday as we were touching down and we got another round of applause.  And, I cried.  Again.  It was incredibly special for Peter and I, after watching Madelyn suffer for a year and half, to be so excited about something.  

When we came down the escalator into baggage claim, another volunteer from Make A Wish was there with a sign and balloons saying “Welcome Cowgirl Madelyn.”  There were adorable stuffed horses in little purses and full-on cowgirl hats waiting for them!  And they were PINK!  Too awesome.  The sweet driver from White Stallion Ranch was there to pick us up.  First thing he said to me was “Somebody from your flight just gave me $20 to give to you!”  We used that $20 to buy Madelyn and Sophia cool horse shirts in the ranch gift shop. Later, the ranch ended up giving her the exact one as a gift.  We asked her if she’d like to exchange it for another... she said “No!  I want to give it to Alaina (her best bud) as a gift!.”
 

The girls were pretty tired by

the time we got into the van and started the drive to the ranch.  They were up at 6am that morning (so excited), we left Anacortes at 8am to drive to Seattle, flight to Tucson and a little time in the sun at the airport waiting for additional ranch guests.  It was now 4:00pm.  So we encouraged them to take a nap on the drive.  Madelyn said “ok” and went right to sleep.  Sophia gave us her super grumpy I’m Mad At You look and said “I’m not tired!!!”  Two minutes later she was asleep.  The nap did them good.  When we drove into the ranch on that bumpy, dusty road Madelyn woke up with a big sparkle in her eye.  She knew we had arrived.  When she saw the big sign (a classic ranch entrance) stretching across the road as we entered, she nearly screamed “We’re at the ranch!”  We parked and Madelyn literally bounced out of the van.  She headed straight over to the horses without so much as a look back at us.  

  

On our first day, Friday, we struggled a little figuring out the system at the ranch, but after that we were fully in love with the place and the people.  We were at the White Stallion Ranch in Tucson, AZ.  This will go down in our family history as one of the most fantastic vacations we have EVER had.  Most of you know we travel - a lot - and have been to many exotic locations around the world.  Even Madelyn... who has been on over 30 plane rides, with five trips to Europe, in her 6 years.  But this place was special.  We all loved learning about horses, watching horses, riding horses and being quiet out in the desert.  The scenery and location was breath taking.  Peter and I are already planning when to go again... when Sophia is 5 and can trail ride too!  

The White Stallion Ranch has an amazing program for their guests.  Everyday they had different activities that you could choose to participate in - most horse related, but plenty of “other” things too.  Everyday they provided breakfast, lunch, snacks, appetizers and dinner.  Everyday we could do as much or as little as we desired.  Everyday we met and chatted with new people.  

 Sophia waiting for dinner... that's a big BBQ in the background.

 MJ outside of our "house."

Awesome cowgirl boots the girls received from Make A Wish.

Madelyn and I headed out on a Slow Ride at 9am (walk in the desert on horseback) and I cried again a little.  She had the biggest grin plastered on her face and she carried herself in a state of spilling over happiness.  In the afternoon she had a lesson with Moniek a wrangler on the ranch from, of all places, The Netherlands.  Moniek gave Madelyn lots of extra cowgirl attention the whole trip and accompanied us on all our horse activities.  Both girls only had smiles for pretty, sweet Moniek.  In the afternoon, Peter’s sister and our niece and nephew came out to the ranch for a visit (they live in Tucson) and we all dipped in the pool.  It was hot, in the mid-80s... the heat felt so good.  Madelyn said “Mommy, when I get older I am going to live in a hot place.”

 The very moment she was on Bronco for the first time.

Each night the owner, Russell, would make an announcement about all the activities for the next day and you sign up.  In the middle of his descriptions Friday night, Madelyn walks up to him (I obviously wasn’t watching closely) and raises her hand.  He says “Yes, sweetie?”  And Madelyn announces to the whole ranch “Um, you know!, it’s my birthday tomorrow!  I’m going to be six!”  A collective chuckle rose through the warm evening air.

So Saturday, birthday day, was filled with so many activities of her choosing - we were worried we might have a major melt down on our hands.  But not once did we hear even a wine... she was in heaven.  Here is how the day played out:

7am straight to the corral to brush “her” horse Bronco with Moniek

8am breakfast of three sausages, fruit and OJ (she always knows exactly what she wants)

9:15am Slow Trail Ride with Peter.  Again, she had a smile plastered on her face and sang “Puff The Magic Dragon” the whole ride.

10:45am she watched a horse being trained

11:30am we had lunch with the Magner family (Peter’s sister’s family) including a homemade poppy seed birthday cake with blueberries, homemade prickly pear lemonade, and presents. Thank you Letitia!!

1pm riding lesson with Moniek and two sweet teenage girls. A storm started to roll in this day.  It was still warm but the wind gusted and layered us all in dust.  Madelyn didn’t care though.  She kept on riding, dust and all.  Again, not one wine!

2:30pm she gave Bronco a bath with Moniek

3:00pm We all, including Moniek, helped the cowboy JC feed the animals in the petting zoo and the cattle.  We did this sitting in the back of an old pickup truck on top of hay bales.

4:00pm Rodeo.  This was fascinating for us all.  The owner of the ranch, Russell, gave the guests a funny, colorful explanation of each event and some rodeo history.  The girls sat through the whole thing entirely entertained.

Before dinner we relaxed in the lodge playing chess with Madelyn and Sophia’s rules.  The rules were quite confusing for us and somehow always insured that they won.  We did puzzles, colored and munched on appetizers.  Peter and I sipped brutally good prickly pear margaritas.  

At dinner, there was live cowboy music.  The girls danced around the patio and head bobbed to the music while eating.  Then the ranch staff came out singing with an ice cream cake, birthday candles and gifts from the ranch and Make A Wish.  The presents were a surprise to us all!  The ranch also gave the girls pictures of Bronco and Scooter.  Madelyn asked Moniek and the two teenage girls over to our table to share in her birthday cake.  Half way through the cake it happened.  She finally hit Tired.  She climbed into Peter’s lap and said “I want to go to bed now.”   So we picked her up, took her to our room and put her in bed with dust covering her from head to toe. She was asleep in about 20 seconds.  

It was the best birthday ever.

During this trip, I counted 10 times that strangers went out of their way to comment on Madelyn.  It’s interesting, she often garners this sort of response from people.  They comment on her confidence, her charisma, her easy smile and her engaging personality.  They also comment on how she takes care of and watches out for her sister; how they are obviously very close.  I tell them about her already inherent tenacity but how it has been tested in this last year and half.  How her battle with cancer has encouraged her already strong belief in herself.  She is not shy to say how she feels, what she thinks or how she wants things done.  She is also very caring and observant of people.  I am so incredibly proud of my girl.
 

MJ and Moniek.

 Working on her lasso skills.

Feeding the horses.

MJ and Bronco.  Check out Daddy in the background.  Getting into the cowboy look!

Watching the training of a horse.

 How cool is this girl?

Daddy learning how to trot.

Moniek, our cowgirl friend, from Holland.

In the "bar" having "drinks" (cranberry juice) and chips.  They are sitting on saddles.

Playing "chess."

On Sundays the horses get to rest.  No riding on Sundays.  That was ok with the weather... it decided to be ultra stormy and rainy that day.  We headed off to the Arizona-Sonora Desert Museum which was a  wonderful place.  Lots of variety and interactive activities.  Madelyn received a camera for her birthday from my parents.  She photographed the whole trip including at the museum.  She spent a long time photographing the desert flowers and hummingbirds in the aviary.  After the museum we went to the Magner’s for dinner which included more of that homemade poppy seed cake and homemade lemoncello.  Yum.  We all had a great time and stayed later than we should have... the girls were asleep about one minute down the road.  

Monday was our last full day at the ranch and it was cold.  Thank goodness we brought our down jackets!  The temperature dropped from the 80s to the 30s.  We were all starting to feel very sad about leaving.  We loved learning about horses, trying something new, being in this beautifully stark countryside, talking with these friendly people, living simply and being relaxed together.  There were more Slow Trail Rides this day and lessons.  

As Madelyn headed out to the coraal for her lessons she followed a new guest, an older gentlemen from Britian.  His horse started eating some vegetation along the path.  Madelyn said “Don’t let your horse do that.  It’s not good for him.  What you do is lift up your reigns and then lower the reigns and give him a kick with both your legs.  That will get him to go.”  The man was thoroughly amused having this six year old girl tell him how it is.  They had a nice chat waiting to entering the corral.  I didn’t hear the rest of the conversation, but he had a smile on his face the whole time.  So did I.

We also arranged for a dual “pony” ride for the girls.  Sophia was too young to do any of the trail rides or lessons, but she could do “pony” rides.  She was on a smaller adult horse and walked down the road with a wrangler leading and Peter or I by her side.  This was actually perfect for her and she loved it.  Such grins.  She loved her horse Scooter and was particularly happy to have a ride with big sis.  Sophia had a marvelous time at the ranch too.  She loved the petty zoo and the nice pack of dogs that roamed the ranch.  She loved feeding the horses and rubbing their noses.  She loved swimming and listening to the musicians each night.  She loved wearing her pink cowboy hat and sparkly red cowboy boots.  We were very proud of our Sophia-girl.  She never showed any fear of the horses, she was just inquisitive and fascinated.  I so enjoyed watching her stretch her arm up and pet the horses.  She is really growing up...

Sophia getting a "pony" ride on her favorite horse Scooter with Moniek's help.  So happy.

One of MJ and Phia's rides together.

Madelyn, Sophia and Moniek together.

In the early evening, we all went to the petting zoo together and then headed to the corral to say hi to the horses.  As we did, the beat up old pickup truck came around with a nice wrangler name Gree.  She let Peter and the girls load up in the truck with her (sitting on hay bales in the back again) and help with the nightly feeding of the horses.  They did this for almost two hours and had just the best time.  They met Gree’s horse Coup, they met a mama horse who will have a baby in May, they learned how to fill the buckets and distribute food, they helped unload the hay.  I watched for awhile, photographed for awhile and then headed to the lodge for a nice quiet sit with a prickly pear margarita...

My favorite people in the whole world.

At the ranch petting "zoo".

That night Peter made an announcement to all the guests about why we were there and thanking the ranch for all their kindness.  We found out we were their, approximately, 25th Make A Wish family to come to the ranch.  Peter said a special thank you to the staff and especially Moniek for taking Madelyn under her wing.  And then it was Peter’s turn to cry.

Tuesday was our departure day.  Before packing, Madelyn and I headed to the corral and saddled up for a trail ride with breakfast in the desert.  The desert was cold, but alluring, quiet and exotic.  Rugged mountains and huge, old saguaros surrounded us.  It was amazing to be there and know in a few hours we would be home again.  As we pulled into the “picnic” spot, Peter and Sophia were there waiting for us; they came with the van delivering the food.  Eggs, potatoes, blueberry pancakes, coffee, hot coco were served to us in the middle of the desert.  Peter then went back on the trail with Madelyn and I went back to the ranch in the van with Sophia.  Then Madelyn and I had one last riding lesson.  Madelyn’s last ride with Bronco.  She (sort of) trotted around barrels, weaved Bronco through cones and practiced her balancing.  Madelyn’s stomach didn’t feel so good (Monday night is always her big dose of chemo night) so we headed in early.  We gave Bronco and Moniek a big hug... and then... it was time to go.  We were NOT ready to go.

Waiting for their horses.

Daddy AND Mommy got into the cowboy look!

 

 She loved trotting Bronco.  She is in full laugh/smile/glee mode right here.

Our morning trail ride with breakfast in the desert.

 

Loving the hot coco.

So proud and happy for this cowgirl.