Friday, March 23, 2012

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.

 

Wednesday, March 14, 2012

March 14 / Ranch Time!

Hi ya'll!


Just a quick update before we head off to the Ranch... we are ALL so excited about this trip!  Special bottle of wine going with Peter and I on the airplane...  


Madelyn's counts were fantastic on Monday.  She is in the perfect "spot" for going on the plane:


Hem  37.0    WBC 2.9    Plat 338    ANC 1515


Her liver function is still running high, but in the ok zone.


The Make A Wish Foundation had a Bon Voyage Party with her homies on Sunday.  Here are a couple pictures :)  It will be a well documented trip you can be sure.  More pictures to come next week!




Thought you all might like to read this article being published in the Seattle Children's employee newsletter in which MJ and Sophia are included!  Not sure the images are going to come through on the blog post...



Pool Makes a Splash for Families
by Rachel Hart

You might think that Madelyn Kuhnlein – who will be 6 next week – would dread her monthly visits to Seattle Children’s.

Coming here means putting up with blood draws, needle sticks and infusions. Every third month, it means a spinal tap to deliver high dose of methotrexate, a chemotherapy drug, directly to her central nervous system.

Description: madelyn_tarrah1_print.jpgBut despite the grueling maintenance regimen to keep her leukemia in remission, Madelyn likes coming to Children’s from her home in Anacortes, Wash. That’s because her parents, Lisa and Peter, fill the family’s trips to Seattle with fun activities, like rock climbing, zoo visits and carousel rides.

Another reason Madelyn and her little sister, Sophia, love coming to Children’s is their post-clinic splashdown in the Therapy Pool.

Text Box: Madelyn Kuhnlein hitches a ride with her swim instructor, Tarrah Clausnitzer, in the Therapy Pool.Most months, Madelyn and Sophia take lessons with swim instructor and lifeguard Tarrah Clausnitzer. Sometimes, the girls and their parents simply dive in and play for an hour.

“We’ve kept up the routine of coming to the pool because we don’t want the girls to associate being in Seattle or being at the hospital with negative things,” says Lisa. “The pool gives the girls something happy to look forward to at the end of Madelyn’s clinic visits.”

Children’s Therapy Pool – tucked away on Train 2 near the Child Life Playroom – is a unique asset for our patients, families, staff and community.

It also offers one of the best aquatics programs in the nation.

Last year, our pool came in #16 in the United States Water Fitness Association’s national ranking of aquatics programs – including pools in all settings, from hospitals to community centers to fitness centers. In addition, Children’s pool ranked in the top five in the following award categories:

·         #1 in Washington State pools
·         #1 in therapy pools nationwide
·         #3 in the number of swimming classes offered per year (an astounding 896 classes in [what year])!
·         #4 in pool-based volunteer programs
·         #5 in swimming instruction

The association also acknowledged Trina Wisdom, director of the Therapy Pool’s, as one of the top aquatics directors in the nation.

Busy all the time

It’s no wonder. Our pool isn’t huge, but it offers an immense and varied menu of programs – all with just two full-time staff members, eight part-time swim instructors and a group of dedicated volunteers.

·         Physical therapists use the pool (bathtub-warm at 94 degrees) to work with inpatients and outpatients from many programs and departments.
·         The Inpatient Psychiatric Unit (IPU) integrates pool time into its daily schedule.
·         The pool offers private swim lessons for patients, adapted swim lessons for children with special needs and group lessons for the children of Children’s employees’ (6 months to 6 years of age).
·         It also offers free swim time every day for patients, siblings and caregivers.
·         Adult lap swims on Mondays, Wednesdays and Fridays and are open to the community for a small fee (it’s free for Children’s faculty and staff members).
·         Schools for children with special needs visit the pool during the school year, day camps come during the summer and community programs for children and adults (like ARC of King County) come year round.

“This is a small pool with very high demand,” notes Trina.

A healthy, fun environment

The Kuhnlein family discovered the pool soon after Madelyn’s cancer treatment began.

“Madelyn started with a chemotherapy drug called vincristine, which causes nerve damage,” says Lisa. “She came to the pool for physical therapy because she was having trouble walking.”

The warm water is an ideal environment for many patients, says Linda Amazeen, the physical therapy assistant who worked with Madelyn.

“In the pool, patients can exercise without bearing their full weight,” says Linda. “It’s a great place to relearn how to walk.”

There are other advantages, she adds. “Most kids are eager to get in the pool, and it’s easy to engage them there,” she says. “For most of our patients, pool time is play time.”

“Invaluable for us”

Some families are frequent flyers at the pool, including the Jefferson family of Seattle.

Six-year-old Miemie Jefferson was born with Angelman Syndrome, a neuro-genetic disorder that is characterized by developmental delay, physical challenges and an absolute passion for water.

The pool offers a kind of freedom Miemie does not have on land, says her mom, Anneli.

“When she is in the water, Miemie doesn’t have to worry about her balance or movement and she’s not shaky the way she is out of the water,” says Anneli. “It takes care of her sensory needs and gives her a tremendous amount of comfort.”

Anneli, discovered the pool about a year ago when she was searching for affordable adapted swim lessons for her daughter. Because Miemie is “totally obsessed with water,” says Anneli, it’s imperative that she learn to be safe in it.

Description: miemie1_print.jpgAlthough the waitlist for adapted swim lessons is long, Miemie and her family found a warm welcome and an open invitation to use the pool while Miemie waited for a spot to open up. Since then, Miemie, Anneli and Miemie’s two older brothers have been regulars at the pool, coming about twice a week.

Miemie needs to be with someone at all times in the water; sometimes her mom is with her, and sometimes she splashes around with volunteers.

“The staff, volunteers and people who use the pool are very friendly, and they’re used to seeing kids with different needs,” says Anneli. “That makes it a very nice place to go.”

Miemie is not the only one in the family who gets comfort from the pool, says her mom.

Text Box: Miemie Jefferson celebrates Halloween at the Therapy Pool.“When you have a child with special needs, there are a lot of places you can’t go,” says Anneli. “It’s invaluable for us, as a family, to have a place nearby that she can access and that’s also fun for all of us.”

For more information, visit the Therapy Pool page on CHILD and seattlechildrens.org, or check out the pool’s Facebook page.