Monthly Archives: July 2013

Tulsa!

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Thank you to KCTV5 for the great coverage of the quilt at Union Station in Kansas City!
We left Kansas City today in the pouring rain.  But not until we had stopped for a late lunch at Oklahoma Joe’s for some awesome BBQ!  Oklahoma Joe’s has won about every BBQ contest there is.  I got a Z-Man sandwich, and I know that my brothers would have loved it.

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Yes, Oklahoma Joes IS in a gas station.
We hit the road and couldn’t believe it was 71 and raining.  Sometimes it was pouring, which made the drive to Tulsa a little longer.  We made it to the Oklahoma state line before dark.
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When we got to Oklahoma, there were highway signs that read “DO NOT DRIVE INTO SMOKE.”  I am trying to figure that one out.  Everything was pretty green and it was mainly farmland, so I am not sure what about Oklahoma would be on fire and cause smoke to choke the roadways.  There certainly wasn’t any risk of fire today with the rain that was coming down.  We saw cows, cornfields, lots of haybales, and then we started seeing horses too.  I used to ride, before the bone cancer in my hip.
We got to Tulsa and then to the Woodland Hills Mall a little after 9 pm.  We have to set-up in malls after hours, so we arrived at nine when they closed.  Woodland Hills is a nice mall, and the location for the quilt is really quite excellent.  I am happy with the space.  We set up in a concave space, and this was the first time mom and I did a six pole configuration on our own.  We are really good at a three pole set-up on our own, but we hadn’t done six poles by ourselves before. Because it was just the two of us with six poles, six bases, six sandbags, and five cross pieces, it took a while to get set up but we did fine and it worked out well for the space.  We left the mall around 12:30am and checked into a hotel and got to our room just before 1am.  Poor mom got drenched in the rain three times today so I think she’ll be buying an umbrella tomorrow.
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COME SEE US AT WOOLAND HILLS MALL in Tulsa.  Tuesday, July 30 & Wednesday, July 31
Then we’re off to Texas!

 

Kansas City- Day 5

We had a great day on Sunday.  The morning was very slow in Union Station, but it picked up after lunchtime.  We had a visit from the Kansas City Star, the local newspaper.  A photographer came out to get photos of the quilt.  We enjoyed help from a lot of volunteers today, and visits from people who had seen us on the news, among them the Myrick family who saw us on the news and drove in from Ft. Levenworth, Kansas to come see the quilt.  Their son Logan has battled a brain tumor.  Great to meet you guys!

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Logan Myrick- brain tumor warrior!

Chandler’s grandparents, parents, brother, and uncle came to visit and volunteer.  Chandler’s mom brought me the best mac-cheese I have ever had.  Thanks Mrs. N!  Chrystal Mackey is a cancer mom in KC who came out to help staff the quilt display, her daughter Madison is fighting leukemia.

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Chandler’s awesome family on Sunday at Union Station, KC.

Because of all the help, I got to take a break and go see the Pirates exhibit, and learned some interesting things about the Whydah, a pirate ship that sank off the coast of Cape Cod in 1717 during a nor’easter and has been salvaged.  They are still searching for more of the ship and its treasure cargo, which is spread out over a large area of the ocean floor.  The cargo was the booty from 50 ship raids.  Because of the sandy floor where she sank during the storm, the conditions kept the artifacts and treasure in good condition despite being on the sea floor for 300 years.   I live in a house that is nearly 300 years old and I come from a boating family, so seeing the artifacts was pretty familiar to me.  It was still interesting though.

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Taking a break to go see the “Real Pirates” exhibition in Union Station.

Later in the day, I finally got the opportunity to meet Kori Quinn.  Kori, her mom and grandmother came out to help break down the display.  Kori is special to me because she and I were diagnosed the same week with the same cancer, and she has been fighting Ewing’s Sarcoma pretty much ever since.  We have followed each other since the begining, but we have never met because of distance. She inspires me, so I was glad to finally have a chance to meet in person after all these years.  Last year I asked my class to write letters to her, because I really wanted to let her know there are a lot of people routing for her.  She is a remarkable person.

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With help from the Newtons and Quinns, we broke down around 7:30pm and had the trailer loaded by 9:30pm.  We wanted to get BBQ, but it was too late, so the eight of us went to P.F. Chang’s in KC and had a late dinner.  It was a great dinner talking and relaxing.
Tomorrow, we check out of the hotel after getting as much work done as possible and head off to Tulsa.  There are so many people to thank on Kansas City, we are grateful to everyone who helped!

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Dinner

10 pm Dinner at PF Changs in KC with the Newton and Quinn families!

Kansas City- Day 4

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Today started out well, because we had help!  Thank you to Mrs. Newton, her parents, and Bette Marcus for helping today.  NBC’s KC affilliate, 41 Action News/KSHBTV sent a reporter out to cover the story this morning.  Journalist Fernando Ochoa came out and covered the story for 41 Action News.  Here is the link to his piece: http://www.kshb.com/dpp/news/local_news/angel-quilt-makes-stop-at-union-station-raises-money-for-pediatric-cancer-research  Thank you to 41 Action News/NBC for helping to make some noise for kids cancer.

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Chandler Newton had lots of visitors today!  His parents, two sets of grandparents, friends, and one of his nurses came to visit his panel on the quilt.

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These beautiful children, all dressed in yellow and playing with our legos, recently lost their daddy to a brain tumor.
I was toast.  We haven’t had much if any time to rest, so mom dropped me back at the hotel later in the afternoon and covered the quilt by herself tonight so I could get a break.  I did my laundry in the hotel’s basement, and had it done by the time she got back to get us dinner around 9:30 pm.
Tomorrow, one of our volunteers is someone special I am looking forward to meeting in person.  Her name is Kori Quinn, and she and I were dignosed the same week with the same cancer.  Kori and i have followed each other’s stories but we have never met.  She also has a foundation; it is called i-rock: http://i-rokfoundation.org/Home_Page.php

Kansas City- Day 3

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Union Station, Kansas City.  We received a call in the morning while still at the hotel, it was KCTV5 News and they wanted to interview me at the quilt for the morning show.  We were not set up yet at Union Station because they needed us to set up in the morning.  So we scrambled, I grabbed my tie and blazer and we got to Union Station as fast as we could to get the quilt set up in time.  We found the building, in the pouring rain and hoped there would be an overhang so we would not get drenched while unloading the trailer.  Luckily, we discovered that the loading dock had a roof over it.  We had help from Mike, who helped us get through loading bays, freight elevators and showed us where to set up.  The news team was already there, and they interviewed me while we set up– they were great.  Mom ran to move the trailer and missed it when another news team came from Channel 4 to cover the quilt and interview me.  So there are no photos of either Channel 5 or Channel 4, but trust me, they covered the National Angel Quilt!  Thank you! I haven’t found any links though, so can’t share the coverage.
Union Station is a great building.  It opened in 1914, closed in 1985, but was reopend in 1999 as a home to museums and attractions.  It is now an operational train station again with Amtrak.  There are couple of restaurants that have great food, and a lot of attractions and exhibits.  Right now the special attraction is the National Geographic “Real Pirates”  exhibit that contains treasure from the only salvaged pirate ship wreck in history.  I haven’t been to it yet, but hope to see it tomorrow or Monday.  Chandler’s mom told us about the Kansas City massacre that took place here in 1933.  Bullet holes are still in the building’s facade.  Here is the FBI’s account: http://www.fbi.gov/about-us/history/famous-cases/kansas-city-massacre-pretty-boy-floyd

 

Kansas City- Day 2

We spent Thursday at the Plaza Branch of the KC Public Library. A few people mentioned that they had seen the news coverage the night before on Channel 9, (KMBC/ABC).  It is always great to hear that people saw coverage of the quilt and childhood cancer.  Media coverage really helps advance the cause.  An interesting note abou the KC Plaza Library.  When we arrived, one door and window were boarded up.  Apparently a seven year old boy drove the family car into the library.  His mom had left him in the car with the keys in the ignition while she went into the library.  the boy was not injured, but the lesson here is to never leave kids unattended in a car!
Chandler’s mom came by to see the quilt.  A surprise visit was from a pediatric oncology nurse, Bette Marcus, who had been a nurse to both Chanler and Derrik– both boys are on the quilt.
We broke down at 10pm and got back to the hotel after midnight.  Set up at Union Station is in the morning.

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Chandler’s Mom and Nurse visit the quilt at the KC Library Plaza.

Our two local angels are Chandler Newton, and Derrik Ray.  We’d like you to meet them:

Chandler Newton

Chandler Newton

Chandler Dale Newton, Chan-Man, came into this world on December 28, 1998, in Kansas City, MO.   He was always in a hurry to accomplish things. He was diagnosed with a PNET/brain tumor on March 21, 2001.  He had his first surgery on March 26th.  He was always a shrewd business man and was able to con almost anyone out of their prized possessions, or con anyone into getting a pet for him.   He would charge his older brother (either money or watching Barney) to sleep with him.  He would sell tickets for people to go into his room, but the price depended on who the person was.  It cost grandma and grandpa a buck or two to get into his room.  After he had tendon lengthening surgery, he had a cast on his arm.  He told everyone at church that he had been bitten by an alligator.  He learned that he could use syringes to squirt the doctors and nurses.  In Portland, Oregon, Chandler swiftly pick-pocketed the neuro-oncologist.  He conned his occupational therapist to lock herself in a small storage box.  He was an avid ladies man.  He was often the only boy at girl birthday parties.  He loved school and his Kindergarten teacher.   Chandler loved to travel and go anywhere he could.  He was a true snuggler.   He loved to help bake in the kitchen.  He loved his aunts, uncles, and grandparents, but especially his brother.  He wanted to do everything his dad did too!!  Chan-Man was a master Lego and K’nex builder.  Chandler would do anything to make people laugh.  Chandler survived for almost 6 years after his initial diagnosis, thanks in large part to his amazing oncologist, Dr. Max, and his very special nurse, Bette.
-Chandler’s mom

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Derrik Ray

Derrik Randall Ray  4/24/1996 – 6/9/2007

Derrik was your average 2-year-old little boy who always had a smile on his face and was looking for trouble.  The only difference was that he had a rare muscle disorder that prevented him from walking with ease.  We accepted the fact that his life would be harder than most but our family was up to the challenge and knew we would always treat him “normal”.  Then one day he became sick and after numerous tests we received the news that he had desmoplastic small round cell tumor that was located in his entire abdomen and lungs.  The doctors told us that he probably had it since birth. They told us this cancer is VERY rare and that only about 50 people in the world were diagnosed with it a year.  This didn’t slow him down, though.  In his eyes he was never sick.  He endured every test, radiation treatment and chemo treatment with a smile on his face and a song in his heart.  Derrik was a firm believer that God rode a Harley.  He believed that the airplane streaks in the sky were God’s Harley tracks and you weren’t going to convince him otherwise.  He had a connection to God that only children can have.  He loved NASCAR, football, and singing.  He was the karaoke king at Children’s MercyHospital in Kansas City, MO.  We choose not to live without Derrik but instead, we live because of him.  We love you, Baldy!!
-Derrik’s momma

 

 

Kansas City- Day 1

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We were at the KC Public Library Plaza Branch today from 9:30am- 9pm.
The folks at the library were very receptive to learning more about childhood cancer.  We met some nice people who were supportive of our efforts.  Later this afternoon, we had a visit from KMBC – Channel 9, (the local ABC affilliate).  They aired a piece on the quilt during the evening news tonight. We are very grateful for their support.

KMBC- Channel 9, (ABC) came by to cover the story of the quilt today.

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On to Kansas City!

We spent Monday catching up on emails, and getting as much foundation business done as we could to not get too behind while we are on the road.  Like a number of other parts of the country, a crazy weather front rolled through Des Moines in the evening and cleared out the heat.  I don’t think I have ever seen so many lightening strikes in one storm before. I was very glad to see  the temperature go down.  Today, (Tuesday, July 23), we scrambled to get a bunch of work done before we hit the road for Kansas City.
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Once on the road, we stopped by one of the Bridges of Madison County.  We didn’t have time to cover all the bridges, and we knew the trailer would be a problem.  We passed Jesse James birthplace, but I didn’t see much reason to pay homage to the spawning ground of an outlaw and murderer so we kept driving, but mainly it was because we we on a tight schedule.  Iowa seemed to get hillier as we got closer to Missouri.  Missouri seemed to turn from cornfields to hay bales as we crossed the state line.  I keep being surprised at how nice people are.  Back home in NJ, clerks at truck stops don’t ask how you are doing, or offer friendly advice and a smile; they just grunt the price of your item at you.  But in NJ, we don’t pump our own gas, so there is that.  Not sure why it is illegal to pump your own gas in NJ, but we like that law.  We crossed the state line into Missouri, and headed to Kansas City.
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We got to Kansas City, checked into a hotel, and went over the the pubic Library at 9pm to set up the Quilt.  Thank you very much to Jerry Houchins of the Kansas City Public Library for meeting us afer hours and helping us load in!  We set up and are ready for Kansas City!

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Come see us at the Plaza branch of the KC Public Library, Wednesday and Thursday from 9am -9pm, and then we move to Union Station for Friday, Saturday and Sunday.  Hours there at Union Station are 6am – midnight, but I will probably only be there 9:30am – 9:30pm. we are looking forward to two great locations in Kansas City!

Des Moines- Days 2 & 3

Day 2:
Saturday at the mall was pretty slow.  I have been in a lot of malls on saturdays with the quilt, and i have never seen a mall so quite.  We learned that there is a huge cycling event in Iowa and it was in des Moines that day, drawing crowds of thousands of people.  OK, so lesson learned here.  Find out what big local events are on the calendar before booking tour dates/locations.  We had a good day regardless.  Everyone at the mall was nice, and Austin DeHaai’s parents came to help staff the display.  We had fun talking with them and passing the time when the mall was really slow.
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Day 3:
Sunday was a bit better; there was more traffic than on Saturday.  Austin DeHaai’s grandparents and a close family friend came to help staff the quilt display and they did a good job.  What’s more, they stayed to help break down and load up the trailer.  This was extreamely helpful because this was the first time we had put up six poles/bases/sandbags, so there was a lot more to load out.

The surprise visitors of the day was the Steffes family of Iowa.  This was very interesting.  We had never met them, and they did not know the National Angel Quilt was in Iowa.  They happend to be at the mall, and as Marty Steffes was coming down the ecsalator, he saw his niece on the quilt and came right over!  It turns out that his brother’s daughter McKaila, from Denver, is on the National Angel Quilt.  We met her mom, dad, and brother when we took the quilt to Denver in April 2012.  Well, ironically, Marty’s daughter, who is McKaila’s cousin, was also diagnosed with cancer.  Both cousins were fighting cancer at the same time.  Gracie in Iowa, and McKaila in Denver.  It was really great to see the Steffes family, and meet Gracie, who is currently in remission from ALL.

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Gracie Steffes, Leukemia survivor, points to her cousin McKaila Steffes on the National Angel Quilt. The two cousins battled cancer at the same time.

McKaila Steffes Aunt, Uncle, and cousins visit the quilt by accident! They had no idea McKaila was on the National Angel Quilt, nor did they know the quilt was in Des Moines. We think McKaila brought them to the quilt that day!

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Maddeson Tersinar’s family also came by on Sunday from Marion, Iowa.  The photos above are Maddeson’s little sister Kendall, who was still a baby when her sister earned her angel wings, but she does know her sister!
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Family photo of the Tersinar Family, (Maddeson’s panel is just over her mom and sister’s heads).

Kendall proudly points to her “Sissy” Maddeson!

Austin DeHaai’s granparents and close family friend. they came to help staff the quilt on Sunday, and were a great help packing up at mall close.

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We packed up on Sunday evening, and said good bye to Valley West Mall.  Thank you very much for hosting the National Angel Quilt and helping us raise awareness for childhood cancers!

Des Moines- Day 1

Friday, July 19, at Vally West Mall.  This mall is pretty nice with a waterfall by the elevator in center court, carpeting, and a I particularly liked the candy store with tons of retro candy and sodas.  I am a big rootbeer fan and took the opportunity to try a few brands I had never seen before.  Friday was a good day at the mall with the quilt.  People were very kind and supportive.

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We met new friends on Friday.  Pictured above are Erin and Taylor Nall.  Taylor is a survivor of a childhood brain tumor when she was two-years old.  It was great to meet a survivor!
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KCCI came by to cover the quilt for the Friday evening news.  I didn’t get a chance to see it, but I hear they did make sure to share Austin and Maddeson with viewers. Thank you to KCCI for covering the story of chilhood cancer and remembering Austin and Maddeson to their community.

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I really like it when visitors take time to read as many quilt panels as possible and get to know a little about each child.  We plan to get a display of some kind to house a tablet with more photos, information, and video of all the kids on the quilt so people can see more of each kid on the National Angel Quilt.

A surprise visitor stopped by wearing his Make Some Noise shirt and bearing gifts of chocolate!  Thank you Jim, it was great to meet you, and I really appreciate your support, and the chocolate!

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Austin DeHaai’s family came by for a visit on Friday evening.  His brothers never had the chance to meet him in person.  They will only know him through photos and stories, but he will always be their brother.

After  the mall closed and we packed up for the night, we headed into downtown Des Moines around 10pm to grab a bite at Zombie Burger.  OK, so you have to go here.  It is amazing even if you aren’t a zombie fan.  The chef makes delicious and interesting combinations of food.  There are some fresh ideas, (or fetid if you prefer to go with the whole rotting flesh thing), just look at the menu for some cool twists and amazing milkshakes: http://www.zombieburgerdm.com/  Click on “Menu”
I got a Trailer Trash Zombie Burger and a Tallahassee Shake.  The Tallahassee shake has twinkie in it and it is a nod to Woody Harrelson’s character in Zombieland.  There were a ton of flavors in the Tallahassee, it was memorable.  I will be back for more zombie burgers, fries, and incredible shakes!

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It was hot today, and not just here in Des Moines, seems it was crazy hot everywhere around the country.  We got the quilt display set up this evening, and we’re ready!
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Come see us at Valley West Mall in West Des Moines: Friday, Saturday, and Sunday during mall hours, (10am – 9pm Fri. & Sat., 11am – 6pm Sun.).  You will find us in center court by the fountain and elevator.  It is a great space for displaying the quilt and we are happy to be here.  Thank you to Valley West Mall, and especially Trisha Barton, Marketing Director, for hosting the National Angel Quilt.  We are looking forward to a great week end.

Our Iowa Angels are Austin DeHaai, and Maddeson Tersinar:

Austin_DeHaai Maddeson TersinarAustin Gene DeHaai 11/16/2009 – 2/16/2011      Maddeson Tersinar  04/05/02 – 08/21/2009

Austin:  Austin was our miracle boy who we waited six years for. He brought laughter and sunlight into our home. He was a happy baby who always had a smile on his face. He loved life and had fun no matter what he was doing. He hit all his milestones on time or ahead of schedule. He didn’t like to sleep, didn’t want to miss out on anything. Austin’s favorite thing to do was climb the stairs. We had a game we played called Where’s Austin? Anytime I said that he would come to me, take my hands off my face and give me Austin kisses, nose to nose and laugh. He loved the outdoors. He spent many hours helping his dad fix things around the house. We never had a clue he was sick.
In November he celebrated his first birthday. We noticed he was falling down more. On 11-24-10 he woke up limping and holding his arm funny. After a trip to the pediatrician’s office we were sent to the ER for a CT scan which turned into an MRI. They found a tumor on his brain stem. Later we learned it was Atypical Teratoid Rhabdoid Tumor (AT/RT) a rare fast growing tumor usually fatal in young children. Austin was strong and brave and kept that big smile throughout his cancer journey. We love you Austin forever. You will never be forgotten…
-Austin’s Mom

Maddeson: Maddeson was a vibrant, sweet, intelligent 6 year old, who loved school, playing softball, fishing with her Daddy, camping with her family and playing with her friends. In November 2008, Maddeson slipped and fell on the ice at school. Her bottom was sore for a few days but then she seemed fine. She slipped again at the end of December and she developed a lump. X-rays showed no broken tailbone, but when the lump and pain did not subside, an MRI and CT scans were performed. Maddeson was diagnosed with Pelvic Ewing’s Sarcoma on February 2, 2009.  Her primary tumor was in her hip, but the cancer had also metastasized to her lungs. Maddeson was to receive 14 rounds of chemotherapy, several radiation treatments and eventual surgery.  However, by August 2009, the cancer had spread through Maddeson’s abdomen at an alarming rate and large tumors had grown in her abdomen. Maddeson’s wish was to go to Africa on a safari, but due to her condition, her wish could not come true.  Instead, on August 19, 2009, through the amazing effort of the hospital staff, the Make A Wish Foundation and Sea World Orlando, Maddeson experienced her very own, personal Shamu show via Skype.  Maddeson fought heroically and never gave up but the cancer was too much for her little body.  At the young age of 7, Maddeson earned her Angel wings, on August 21, 2009.  In February 2010, Maddeson was named the Most Inspirational Wish Child of 2009 in Iowa by the Make-A-Wish Foundation.  She is deeply missed by her parents and sisters, Kendall (age 2) and Josie (age 13).
-Maddeson’s Mom
You can read about Maddeson’s journey of bravery and courage at: http://www.carepages.com/carepages/MaddesonsFight

  

To Des Moines!

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Joliet Prison

Joliet Prison

We left the Chicago area around lunchtime in 100 degree heat, but not until after stopping to visit Jake & Ellwood, (The Blues Brothers), at the Joliet State Prison.  On the prison tour, they will lock you in a cell.  Interestingly, the architecture of the Joliet High School strongly resembles the prison, and I wonder if the students feel the resemblance is too similar.
After some construction hang-ups we headed west on Rt. 80 towards Iowa.  We crossed the mighty Missippi, which seemed pretty calm today.  Iowa was not as flat as I thought it would be.  It is covered in corn fields like I expected, but it has trees and hills too.  We saw an 18-wheeler with a load of pigs stuck with a flat tire.  With this heat I am surprised we haven’t seen a lot of blown out tires on the road.
We took a detour up to Cedar Rapids to visit Maddeson Tersinar’s family and see the playground that was built in Maddeson’s memory at her elementary school in Marion, Iowa.  Maddeson was diagnosed with Pelvic Ewing’s, (same cancer as mine), a few months after I was, but she didn’t make it through treatment.  Pelvic Ewing’s has a 50% survival rate right now.  Maddeson earned her angel wings in August 2009.  She was seven-years-old.  She would be 11 now.  It was really nice to see her playground and especially to see her youngest sister Kendall playing on her “sissy’s” playground at Indian Creek elementary school.  Kendall reminds me a lot of myself at that age.
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We went out to dinner with Maddeson’s family at a restaurant in Cedar Rapids.   Mr. Tersinar was really great and fixed a problem with our trailer and then we all went to visit Maddeson’s gravesite. It is pretty neat with photos of Maddeson on it.  It was getting late, so we got back on the road to Des Moines.  We are now in Des Moines and will be setting up the quilt tomorrow evening at Valley West Mall.
The National Angel Quilt will be on display this week: 10am-9pm Fridayand Saturday and 11am – 6pm on Sunday in the center court of Valley West Mall, West Des Moines, Iowa.

Central Time Zone

We pulled out of Troy, MI today.  We holed up yesterday working and trying to catch up on emails and other work, and sleep too for that matter.  It was too darn hot and humid to do much of anything anyway.  But before leaving the Detoit area today, we HAD to go to Motown!

Motown Museum!  Hitsville USA

Motown Museum! Hitsville USA

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I play guitar and a visit to Detroit would not be complete without a pilgrimage to Motown.  It was incredible to be in Studio A where so much incredible talent recorded.  A couple of neat things about the tour: you learn how they created the echo sound in the recordings by bouncing the sound through the attic, and you actually get to sing in Studio A.
After Motown, we hit the road and drove through MI, Indiana, and into Illinios.  I decided to stop in Chicago tonight for deep dish pizza.  We went to Malnati’s, and had their classic deep dish.  On to Des Moines tomorrow.  Shout out to my little buddy Logan, who got some bad news today on another relapse of ALL.  While his bone marrow remains clear, the biopsy on the leasion on his head came back positive for Leukemia.  Hang tough buddy, and kick cancer’s butt again!

Logan-- follow him on FB: LoveforLogan

Logan– follow him on FB: LoveforLogan

One final important post for Michigan:
I am really dissapointed and sorry that Troy was a media black-out for the Quilt.  First, my mom and I completely failed when we had pulled basically an all-nighter getting there and setting up that we only had one hour to sleep before I had to leave to get to a studio interview on Detroit 4.  We didn’t hear our alarms and missed it.  That has never happened, and we were really dissapointed that we failed.  The news station talked about trying to get a team out over the week end, but sadly it never happened.  We thought at least the newspapers were comng and that would be good, but I don’t know what happened that the reporters who came to the quilt never wrote/published the articles.  I am pretty suprised too because they seemed very interested.  I am stunned and sorry that we had no media coverage.
One reason for needing media coverage is to let people know to visit the quilt, another important reason is to raise awareness with facts about childhood cancer to a wider audience, and the third important reason in each area is to remember the children on the quilt from the area we are visiting.  Because we never got media coverage in Troy/Detroit, (or at least non I can find on the internet), I wanted to share the Michigan kids who are on the National Angel Quilt with everyone:

Please meet Andrew Smith, Ashlee Drouillard, Dayne Liberty, and Devan White, all warriors, heroes and angels of childhood cancer.
Ashlee Drouillard
Ashlee Drouillard – 
5/9/1995 – 11/15/2009
Ashlee loved her big sister, Emily, horses, monkeys, and her dog, Bailey.  On June 28, 2007, Ashlee was diagnosed with synovial sarcoma, at the age of 12.  After 8 rounds of chemo, 10 hours of surgery to remove the tumor and 6 weeks of radiation she was told in 2008 that the tumor was gone.  She packed up her infectious smile and started junior high that fall.  But in January 2009, the cancer had returned, this time on the left side instead of the right.  Ashlee had more rounds of chemo and experimental drug treatments, which unfortunately had no effect.
Ashlee earned her angel wings on November 15th, 2009, at the age of 14.  Ashlee was always optimistic and became an inspiration to many.  She dreamed the dreams that most young girls do.  She dreamed of prom, boyfriends, driving, college, marriage, children and so much more.  She also wanted to be sure people became aware of Childhood Cancer and hoped the cures would be found.  Ashlee loved life, her friends, and her family.  She will be loved and remembered forever.
-Ashlee’s Mom

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Andrew Smith
Earned his Angel Wings on 12/04/2009 after battling DIPG, (a brain tumor). He is deeply missed by his family, friends, and community.

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Dayne Liberty
Earned his Angel Wings on 11/23/2010
Dayne (D.J.) was diagnosed with Liposarcoma when he was 9 years old. It is a rare childhood cancer and the doctors misdiagnosed his cancer as benign because they had never seen this before in a child. He had multiple surgeries and and radiation treatments before he was 12. When DJ was 13 he had 2 courses of chemotherapy and besides loosing his hair, he had no serious complications. We thought everything was good until a tumor was discovered on an artery near his heart. Even after surgery and another round of radiation the tumor spread throughout his lungs and he was put on hospice one week before his 14th birthday. We brought him home on a Sunday Nov, 14th, had a giant birthday party for him that day with family. On the 15th he had one of his closest friends over to visit. He passed away the following Tuesday, November 23, 2010.
DJ loved the beach. He would spend most of his summer vacation with his cousin Tyler in Traverse City. He also loved to travel. He visited Gettysburg, Mystic Conneticut, Ohio, Illinois, Tennesee, Chicago and many more places. His wish was to start high school. He was able to attend ninth grade for 3 weeks. He made such an impression on his classmates and teachers in such a short period of time. There were people at his funeral that I hadn’t even met yet. They would tell me stories of how smart he was in class and how much he loved to be in school.
He was an awesome big brother, cousin and friend. He is survived by his younger sister Macey and his little brother Nate, his parents James and April, grand parents, great grandmother, aunts, uncles and cousin Tyler. His life impacted so many while he was here on earth. We all miss him and daily and dearly. We are happy to see that he is remembered with this quilt. I hope that anyone who reads this and sees his smile understands how much his life influenced others.
-Dayne’s Mom

Devan
Devan Christopher White  –  5/11/1995 – 1/7/2011
My son Devan was an active 15 year old boy that played several sports.  He had many friends as he was quite the character and had the personality that would light up a room with laughter.
He was a freshman in high school when he was diagnosed with NET – Primitive Neuro Ectodermal Tumor (a rare, cancerous, pediatric brain tumor).  We took him to Columbus, Ohio on January 13th, 2010 to have the tumor removed at Nationwide Children’s Hospital.  Following the surgery, we brought him back to Ft. Wayne where he would undergo aggressive radiation and chemotherapy at Lutheran Children’s Hospital for several months.  During the treatments he became very weak and lost most of his eyesight.  Once the chemo was stopped, the tumor began to grow and spread like wildfire.  At this point there was nothing else the doctors could do to stop the growth.  We were told that my sweet boy would possibly make it to Christmas.  Devan remained positive and knew that his time was limited.  He listened to his music and enjoyed the Christmas cards being sent to him from all over the world.  Devan made a wish through the “Make-A-Wish” Foundation and became an honorary Storm Trooper #511 and was presented with his own outfit.  Devan earned his angel wings on January 7, 2001 and now resides in Heaven where we will meet up again someday.  He will be missed and never forgotten.
We love you baby doll.
Love,  Mom.


Troy Day 3- Oakland Mall

Alexis Shaw's grandparents came to see her panel.  Her grandmother is the one who took the photo of Alexis which is on her panel.

Alexis Shaw’s grandparents came to see her panel. Her grandmother is the one who took the photo of Alexis which is on her panel.

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Sunday was a little quite in the mall.  It was a hot day so maybe people had gone to the lake or in search of swimming pools.  I know that is what I would have been doing if I weren’t busy making some noise for kids cancer.  We did have some nice visitors though and were very happy to meet Angel Alexis’ grandparents, and Angel David’s parents– who drove 3.5 hours from Ohio to see his panel on the quilt!

David’s parents were awesome and stuck around to help break down the display and load up the trailer.  It was really great to have their help!  Thank you!

Today was the four year anniversary of my last dose of chemo.  Six more years to go and I can celebrate, (my cancer has a ten year remission period).

 

Troy Day 2- Oakland Mall

Bryce's grandfather

Bryce’s grandfather

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I was feeling more human on Saturday, having had a little more rest.  Saturday brought lots of visitors to the mall, and I was really surprised at how interested people were to find out more about the quilt and the cause.  They seemed to go out of their way to learn more.  We had visits from Angel Bryce’s gandfather, and Angel Dayne’s cousin, parents, and siblings.  It was great meeting everyone.  Thank you all for coming by!

Surprise #1: A man came by and handed me a $50 bill as a donation to research.
Surprise #2: Another man bought $18 worth of wristbands and gave me $120 for it, ($102 donation to research!).  He sent his son back over later to get more information about Make Some Noise.  Thank you for your support and interest!

Funniest person in the Mall: There is a foreign elderly man who comes to the mall every day and tries to make everyone happy with funny riddles or jokes.  Its a little hard to understand him, but you can’t help but smile.

Troy Day 1- Oakland Mall, Troy Michigan

Andrew Smith's family visits his panel on the quilt.

Andrew Smith’s family visits his panel on the quilt.

Day one at Oakland Mall.  Its kind of a blur because I was so tired, but we met Shelley the mall Marketing Director and her assistant, Stacy, they were both very nice.  A reporter and photographer from the Troy Times came and interviewed me for a while, and Tim from Troy Patch came as well.  I haven’t seen their articles yet, but when I do, I’ll post them here.  We had a good day despite being tired. The folks in Troy are very kind-hearted people and the quilt was well received.  It was great to be able to share the kids on the quilt, and educate people about the facts and statistics for childhood cancer.  Andrew Smith’s family came to see his panel on the quilt.  We could tell right away which angel they came to visit because the family resemblance was pretty strong!  It was great to meet them.
One of my favorite things in Oakland Mall is the Toll House kiosk.  Luckily, it was right by the quilt.
An interesting note about Oakland Mall: there is a group of retired men who spend time there together, and one by one over the course of the day, each of them came by and made donations to kids cancer research.

On our way to Michigan

 

This is me on the trailer

This is me on the trailer

We hit the road on Thursday, July 11 headed for our first stop: Troy, Michigan.  We picked Michigan because four of the angels on the quilt are from Michigan.  In fact, the very first angel submitted to the National Angel Quilt was Ashlee Drouillard, and her mom has asked us to bring the quilt to Michigan since we started.  We headed to the Oakland Mall in Troy, Michigan to display from July 12-14.
We had a little trouble getting the trailer hitched since mom and I had never done it before and dad was out of town.  The trailer was too heavy to lift it to the car.  We had to get my brother James out of bed to come help.  We tried again and Mom did a really good job getting the car hitch lined up under the trailer.  Between the three of us, we figured out how to get it hitched and secured.  Then we said good-bye to James and pulled out for the highway.
This was our first time driving the trailer.  We pulled off Rt. 80 at one point while we were still in NJ because I wanted a bottle of water.   The exit we took wasn’t the best choice.  There wasn’t a town or store nearby and we drove a little way on some windy little roads until we came to an intersection.  The nav system said to take the next left, which we did.  But the nav system had sent us down a road that was a dead end and it didn’t even have a cul de sac.  So here we are with a full trailer and no easy way to turn around.  Mom got a chance to learn how to back up a trailer.  She had a driveway with a car in it, a fence behind the driveway and a trash can in the street next to the driveway.  It was tight but she did it and we got back on the road to find water.
We drove through New Jersey, then Pennsylvania which is nice scenery but took a long time to cross, then Ohio and into Michigan. Google maps had said it was 9.5 hours from NJ to Troy, and we needed to be there at 9pm when the mall closed to start setting up the quilt.  We didn’t know that there would be so much construction on the roads.  It took 14 hours to get to Troy.  We arrived at 12:30am on Friday, and started loading in and setting up around 1am.  We were really tired, and load in is a lot of work with all the poles, uprights, bases, displays, props, and the giant snowboard bag we use to carry the quilt.  We had it done at 2:30am and then went to find a hotel.  We got to our room at 3:30 am. on Friday morning.

Ohio!

Ohio!

Thank you very much to Mrs. Christie and NJ Heroes for giving me grant money towards the summer tour.  I wouldn't have this cool trailer without your support!  Thanks also to Trailer Super Store in Mechanicsburg PA, to my mom for the great graphics work, and to Tyler Goodman at Advertgraphix for rallying for the cause and getting the wrap on so fast!

Thank you very much to Mrs. Christie and NJ Heroes for giving me grant money towards the summer tour. I wouldn’t have this cool trailer without your support! Thanks also to Trailer Super Store in Mechanicsburg PA, to my mom for the great graphics work, and to Tyler Goodman at Advertgraphix for rallying for the cause and getting the wrap on so fast!

Hello!

Welcome to the Summer Tour blog.  I have never blogged before so bear with me while I find my way blogging the summer tour.  The 2013 Summer Tour is our first Summer Tour with the National Angel Quilt.

Since my diagnosis, (for those who don’t know me, I was diagnosed with a pediatric bone tumor when I was ten, and started Make Some Noise: Cure Kids Cancer Foundation, Inc. when I was eleven), besides surving, my two primary goals have been to raise national awareness and raise millions if not billions of research dollars to help find the cures for childhood cancer.  Kids deserve the chance to grow up and it is not fair that pediatric cancer gets so little funding and attention.   We need to find the cures.

We started the National Angel Quilt about a year after incorporation. The National Angel Quilt was actually my mom’s idea not mine but it was a really good one. She had four mom friends who lost their kids to cancer all in about two weeks of each other and like me she was really upset that the country has no idea who we are losing. We already had the foundation up and running and I was always trying to figure out how to make as much noise across the country as possible to raise national awareness so we can speed up the cure research. When she dreamt up the National Angel Quilt we both knew this was going to be powerful. “Angel” came from the fact that every time a child dies, their parents post on their carepages that their child earned their “angel wings.” And we called it the National Angel Quilt because this is a national issue, well actually a global issue but in the US alone, we have lost between twenty thousand to thirty thousand kids to cancer in the past ten years alone. The quilt features images of some of the children we have lost to cancer. When families hear about the quilt and decide to add thier children to be remembered.  Their families send us photos which we sew into a square panel and the families personalize their children’s panels and each one is different.

The Quilt gives the country a chance to get to meet the kids we have lost and understand that these were not just statistics they were great kids with futures until one day when they were diagnosed with cancer.  If the country could meet all the kids it wouldn’t be so hard to ignore childhood cancer. The children on the quilt were all incredible heroes. They deserve to be remembered. They should still be here with us growing up, playing sports, going to school, learning to drive, graduating, having jobs, spouses, kids. They don’t get that chance. We are really honored to be able to share each of the angels with the country and to bring awareness for kids cancer in a way that means something.

Once we had started the quilt another goal of mine has been to get the quilt to as many places in the country as possible because I feel I need to help keep their memories alive and share them with as many people as possible.  There are thousands of kids like me who were normal healthy kids until one day when something wasn’t right.  For me, it was a pain in my hip.  For others it could be any number of inoquous symptoms that just don’t raise alarms because people think childhood cancer is so rare. For 1 in evey 320 kids, that pain or other symptom turns out to be cancer.   For thousands of kids every year, it means giving up your normal life for long hospital stays, chemotherapy, radiation, surgeries, bone marrow transplants, and more.  There are up to 20,000 kids a year in active treatment for cancer in this country, and any one of us could wind up on the national angel quilt.

I owe it to all the kids we have lost to keep their memories alive.  They fought to live as hard as all the rest of us cancer warriors.  Many of them did what they could to help raise awareness and sometimes even research funds too.  I am inspired by all of the kids.  I can help them keep trying to get people to pay attention to childhood cancer.  They deserve to be remebered.  They deserve to be heard.  I owe it to millions of kids who haven’t been diagnosed yet to help raise the research funds to find the cures so that they have the chance to grow up.

So far, the quilt has been to PA; four locations in NJ; Boston; Maryland; Denver; Seattle; Rochester NY; and Atlanta, Georgia.  I am very grateful to all the venues who have been brave enough to host us so far.  We don’t get accepted everywhere we try.  In fact we get turned down a lot.  So it is really nice when you find someone who cares enough and is willing to help.  Each marketing director who has agreed to host the quilt at their venue has been one of those special people who cares.

We will continue to get the quilt to as many places across the country until we have done our job!  For the 2013 Summer Tour, we will be in Michigan, Iowa, Kansas City, Tulsa, Dallas, and hopefully a few more places.

We head out on the Summer Tour today, and I will be posting as we move around the country with the National Angel Quilt this summer.  I had hoped to have an RV for the 2013 Summer Tour because I thought it could help get more attention.  We didn’t manage to get one donated so we got a trailer instead.   I think it looks pretty good and I hope it helps get people to notice childhood cancer. Thank you very much to Mrs. Christie and NJ Heroes for giving me grant money towards the summer tour.  I wouldn’t have this cool trailer without your support!  Thanks also to Trailer Super Store in Mechanicsburg PA, to my mom for the great graphics work, and to Tyler Goodman at Advertgraphix for rallying for the cause and getting the wrap on so fast!

-Malcolm
Founder/Ex-Offico Chairman, Make Some Noise: Cure Kids Cancer Foundation, Inc.

Malcolm Sutherland-Foggio

Malcolm Sutherland-Foggio