Monthly Archives: August 2013

HOME!

And we’re back!

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We arrive home Monday night, after stopping in Baltimore to pick-up my oldest brother from John’s Hopkins so we could see him for a week before he goes back down to school.  We are busy getting my middle brother packed up for his freshman year of college because he moves into his dorm today.  I still have summer reading to finish, but I have time before my school starts.  Pre-Season starts for soccer.  I can’t play sports anymore because of my cancer, so I manage teams at my school, (Delbarton).

HERE IS A BRIEF SUMMARY OF MY SUMMER TOUR:

3,983 miles travelled with the quilt, (8,091 miles travelled this summer– including my trip to Seattle)
176 hours manning the Quilt display.
48 hours setting up and breaking down the quilt.
3 Newspaper Interviews
14 TV Interviews
Estimated 3.2M people reached with news coverage.
Estimated 6,000 people saw the quilt in person.

Later this week, I will post a full listing of all media coverage, and the mile long list of people I need to thank for helping to make the 2013 Summer Tour with the National Angel Quilt a success.  So look for that later this week.
This was my first year trying out a summer tour.  I plan to do a tour every summer, until the cures are found!  For now, it is back to school, back to business at the foundation getting fundraisers lined up so we can fund cure research, (and stop the quilt from growing), and I will probably be on tour a little with my book that is coming out this fall.  The quilt will probably get to one place per month during the school year. Between school, managing sports teams, debate, foundation business, and the book, I can’t fit in more than that during the school year.  Though I wish I could.
-Malcolm

Asheville – Day 3

On Sunday, we were greeted with the following newspaper article in the Asheville Citizen Times:
http://www.citizen-times.com/article/20130818/NEWS/308180068/Child-cancer-Angel-Quilt-Asheville-Mall-today?nclick_check=1

Sunday was busy, lots of people came out because of the article and because Shayla’s mom and sister had been posting about the quilt on their FB pages.  We were surprised by a visit from ABC 13, and though I believe they ran the story on Sunday, we can’t find a link to the coverage.  Andy Coates was the reporter who came out.  He interviewed me for a while and took a lot of footage of the quilt.

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Andy Coates of WLOS/ABC Channel 13

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Andy got lots of footage of the quilt.

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Shayla’s mom, Jenn, and sister, Savannah, helped man the quilt on Sunday. We caught a photo of Jenn playing with the blocks, (above).

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Anna  Brooks had a visit from Marsha Griffin who sent her handmade cards during her cancer battle, and continues to send cards to Anna’s brother.

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Shayla’s favorite babydoll, Jiquan, made a visit to the quilt on Sunday. Jiquan tavels almost as much as we do!

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Jenn Garrett was a big help breaking down on Sunday night.  She had a chance to add some decorations to Shayla’s panel before we packed the quilt.  Thank you to Mrs. Bleeker for finding the venue for NC and traveling out from eastern NC with Garrett to help staff the quilt; to Savannah and Jenn Garrett for helping staff the quilt and break down; to Barbara Blake and the Asheville Citizen Times; to Andy Coates and WLOS ABC Channel 13, and to all the good people of Asheville and beyond who came out to see the National Angel Quilt, support cure research, and learn more about childhood cancers.
THANK YOU!

We hit the road around 8:30 pm Sunday night to get as many miles in before morning.

Asheville – Day 2

On Saturday at Asheville Mall, we had visits from family and friends of Jessamine Nail, Trey Tucker, Shayla Garrett, Grant Bleeker, and Ava Sentell.  We also visits from a survivor of childhood cancer, and two moms who have angels they would like to add to the quilt.  A photographer from the Asheville Citizen Times came out to get photos and was able to include Jess’ dad and Grant’s mom and brother, Garrett in the photos.

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Jess’ grandmother, Carrie Nail, gave me a very generous check for cure research. Thank you Mrs. Nail, we are grateful for your support.

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Jenn & Savannah Garrett with cousins stand under Shyala’s panel

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Trey Tucker gets a visit from his aunt & uncle :)

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Polly and Garrett Bleeker come in from the Raleigh area to help staff the quilt and visit Grant’s panel on the quilt.

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Asheville, NC – Day 1

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in Asheville Mall

Meet our NC Angels:

Anna Elizabeth Brooks
10/17/1999 – 04/16/2010

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Anna was a full-of-life, free-spirited 10 year old.  She was a competition cheerleader who also enjoyed gymnastics and softball.  Anna’s true passion was singing and dancing on the Children’s Praise Team at church.  She was in the 4th grade.
For several weeks Anna had some vague symptoms of headache, stomachache and an occasional fever, but always bounced right back after a quick nap.  Nothing held her down or back.  Finally she had some symptoms with her gums and the dentist wanted to do blood work.  The results changed our lives.  She was initially diagnosed with leukemia on April 10, 2010.  Her official diagnosis was Acute Myeloid Leukemia 5-b.  Aggressive and rare in children are the words I remember.  Complications of DIC and tumor lysis were already present on admission to our local children’s hospital.  We went to the hospital on Saturday, April 10, 2010.  By Monday, April 12, 2010 she was placed on a vent because of the complications and to have her port placed for chemo.  Anna never was able to be taken off the vent after that.  She received chemo around the clock but leukemia was secondary to DIC at that point.  Anna passed away only 6 short days on April 16, 2010.  Many see her quick passing as a terrible tragedy.  I see it as a blessing.  Anna only had to know she had cancer for 2 days.  She rested peacefully through the chemo and never had to fear the outcome.  We talked the day we went to the hospital, and Anna knew without a doubt who was in control and if dying was her outcome she knew HEAVEN was her reward.  She knew she would wake up to the face of her Almighty Savior.
The day I told Anna we had to go to the hospital she got mad because she was getting ready to go to the movies and couldn’t go.  That’s how she lived.  Even as sick as she was, she wanted to go to the movies.  She lived until she simply didn’t.  She lived BIG.  She lived life to the fullest all her days.  I miss her beyond belief but live with the hope that I will be reunited with her one day.  I grieve but not like those with no hope.  WE LOVE YOU ANNA AND CAN’T WAIT TO SPEND ETERNITY WITH YOU!  Love, Mommy, Daddy, and Ben www.caringbridge.org/visit/annabrooks

Ava Sentell

Ava Lynn Sentell

Brett Jensen

Brett Jensen

Emily Lauren Rose
6/10/1997 – 12/20/2008

Emily McKelvey

A cheerleader and honors student, Emily had just completed her junior year in high school and had just begun her summer volunteering as a counselor at a summer camp.  For one week out of the summer, the camp is utilized by CampCare – a camp dedicated to children with cancer.  Since CampCare brings in their own staff, the counselors are given that week off.  Emily decided to stay and volunteer with the CampCare kids.  She was deeply touched by the children she got to know and called me from camp in tears sharing their stories of bravery, their great appreciation for life and the things that really mattered.
A week later, Emily became ill with a sore throat, enlarged tonsils and was completely zapped of energy.  The doctor suspected mono, but after a routine blood test, we were told “Emily has leukemia”.  Further testing revealed she had Acute Myeloid Leukemia and she began chemotherapy that very same day.  After three aggressive rounds of chemo, a bone marrow transplant, and being hospitalized for five months, Emily sadly lost her battle at the age of 17.
As was characteristic of Emily, she was more worried about those of us around her than herself.  She fought her battle with courage and dignity and taught each of us how to truly live life.  She left with us the beautiful memories of her radiant smile and the unselfish love she had for all of us.  We miss you, Angel face. www.caringbridge.org/visit/emilyrose

Grant Bleeker
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Kayliegh Banfalvy
1/26/99-05/06/02
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Shayla Garrett

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Watch Shayla in a Make Some Noise video with me and some of our other oncology warrior friends last year, (she is the one with the short blonde hair):

We set up the quilt Thursday night in Asheville Mall.  It took a while because the security guard wanted to share bear stories with us.  We didn’t get out of the mall until 2am, and went to look for a hotel.  Friday in the mall was a little quiet.  Savannah Garrett, (Shayla’s sister), spent the day helping out manning the quilt.

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Savannah Garrett

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Shayla’s Friday visitors

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Savannah talking to some quilt vistors.

North Carolina

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We wanted to get in some sightseeing in the Carolinas.  Mom used ot live in Charleston, so that would have been one option, but the A/C needed to get fixed and the Toyota Dealer in Birmingham couldn’t get the parts until Tuesday morning.  So we were layed over in Birmingham for repairs.  It turned out that the car needed the A/C, brakes, and power steering all fixed.  We hadn’t had a single day off for weeks, so we took Monday off and I caught up on some movies.  Mom ran errands on foot and took care of a bunch of emails that have been piling up.  She gets over a hundred emails a day.
In the late afternoon, we actually went to the pool for a little while and mom swam some laps.  That was about it for our summer vacation.  The car was finally ready on Tuesday afternoon.   Once we had picked up the car, checked out of the hotel and hooked up the trailer, it was nearly 5pm.  We hit the road for Charlotte because i had an interview at 9am in the morning at Charlotte’s Channel 9, (ABC),   We drove through Alabama, Georgia,  South Carolina, and into North Carolina, arriving in Charlotte around 2:30am.
I had an interview with Tenikka Smith on Charlotte’s Channel 9,(WSOC/ABC), at 9am on Wednesday.  Here is Tenikka’s piece:

Thank you to Tenikka, and WSOC for covering the story of childhood cancer, the National Angel Quilt, and the local Charlotte area kids who are on the quilt!
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We’ll set-up the quilt on Thursday at the Asheville Mall in Asheville, NC.  We’ll be there August 16-18, so come see us there!

Birmingham Day 2 & 3

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Riverchase Galleria…

We are really grateful to Riverchase Galleria and Marketing Director, Chris White, for their incredible support of the National Angel Quilt and Kids Cancer Research.  The Carousel has been away for renovations since January, and the Center Court/Food Court has been under construction.  The Carousel couldn’t have returned at a more perfect time.  Its grand re-opening week end was August 9-11.  the same dates we were displaying the quilt at Riverchase Galleria.  To support childhood cancer, Riverchase Galleria decided to make all grand Re-Opening Carousel rides free tot he public and asked instead that people donate to Make Some Noise.  You can see both the quilt and the carousel in the photo above.

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Huge thanks to Chris White, Marketing Director at Riverchase Galleria, (in the photo above), for his compassion and support for kids’ cancer.  Thank you to Chris, Riverchase Galleria Management, and all the good people of Birmingham Alabama!

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Two Grandparents with thier Grand-Angels :)
Lindsey’s Grandmother and Daniel’s Grandfather were at the quilt on Sunday.

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Robbie’s folks came by on Sunday to not only visit Robbie on the quilt, but to help staff the quilt, and were great help breaking down on Sunday night. THANK YOU!

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Friends of Lindsey’s

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The Montgomery Family– Reilly is a survivor of childhood cancer :)

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Birmingham – Day 1

Well, after only an hour and a half of sleep and the long hot ride in from Ft. Worth, I got up and showered to get to the FOX 6 interview with Jeh Jeh at 6:30am.  We found Riverchase Galleria and met the Jeh Jeh inside by the carousel.  He does the morning show, “Good Day Alabama,” and that meant it would be LIVE morning coverage, which is great.  We did two segments during Good Day, and apparently they have a great viewership because a lot of people came by to meet me and let me know that they saw Jeh Jeh’s segment.  Thank you Jeh Jeh, Good Morning Albama, and FOX 6!
Here is the link to one of the segments: http://www.myfoxal.com/story/23091962/good-day-alabama-for-august-9-2013

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Live on “Good Morning Albama” with Jeh Jeh on FOX 6

Friday was a good day at the mall, it was pretty busy because of the carousel opening and media coverage.  Lots of people came because they saw the news coverage.  Everyone who stopped by was very kind and interested in learning more about the quilt and childhood cancer.  Thank you!

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CBS- Channel 42 in Brimingham

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Thank you RIverchase Galleria! This is awesome!

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Lindsey’s Grandmother Debbie came by on Friday. It was great to meet her. She was able to talk about Lindsey in the ABC interview.

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ABC – Channel 33/40

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Lindsey’s mom and co-workers

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Lindsey’s mom and grandmother

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Jessamine’s cousins :)

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These little guys build a structure which they said was to honor the kids on the quilt. Awesome.

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Toasty

Heading to Birmingham:
We were looking forward to Birmingham because Riverchase Galleria had been really great taking in the National Angel Quilt, and tying it to the unveiling of their newly refurbished carousel in Center Court.  Their carousel has been in San Fransisco since January and their center court has been under construction.  The Marketing Director at Riverchase Galleria arrranged to have the re-opening of the carousel benefit kids cancer research through Make Some Noise!  The media coverage on the carousel had been building and the National Angel Quilt and kids cancer was tied to it.  This was a great opportunity for us to share the story of childhood cancer.

Having gotten back to our hotel room in Ft. Worth from the Seattle Flight at midnight Wednesday night, I was hoping to sleep in a little on Thursday morning.  Mom said the drive to Birmingham would be about 12 hours because we have to stop for gas a lot with the heavy trailer.  We had thought we would be setting up in Birmingham at mall close at 9pm on Thursday.  This meant we should leave Ft. Worth by 8:30am or so; but Chris, (the Marketing Director at Riverchase Galleria in Birmingham), said that it would be best to set up in the morning on Friday because there was still a fair amount of construction going on in center court that night.  This was great news to me because I took it as a chance to sleep in.
Mom let me sleep until around 10:30am then I got up to shower and pack. We checked out, loaded up and were on the road around noon.  This would put us in Birmingham around midnight.
The car was all cleaned up by the fabulous Wade-Brigade, and we hit the road!  It was 105 degrees.  I was glad to have air-conditioning.

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We got onto Rt. 20, and hoped to be in Birmingham by midnight.  About 15 minutes outside Ft. Worth, a reporter named Jeh Jeh, from FOX 6 in Birmingham, called to schedule a 6:30 am interview for the next morning.  OK, we better hope we don’t get in too late because getting up at 5:30 am would be hard given how little sleep we’ve had.  While I was talking to Jeh Jeh, from FOX 6, our A/C stopped working.  It was only blowing hot air.  Mom and I don’t know too much about cars, so don’t laugh if our thinking and problem sloving on this is deeply flawed, but being foreigners to the world of car mechanics, we just stumbeled through options and possibilities.
We thought “not cooling” could mean no coolant, and wondered if no coolant could lead to engine overheating.  We didn’t want to risk frying our engine, so we got off at the first exit possible to check the coolant level and add more.  We stopped at a gas station, and they did sell coolant.  Mom checked the owners manual to find the location of the coolant reservoir, opened the hood and looked at the coolant level.  It was a little low, but more than half full.  So, not a coolant issue.  Riding 12 hours in 105 degree weather with no A/C wasn’t a great option, so we decided it was worth a little time to investigate further to see if it could be resolved without taking too much time and to be sure we wouldn’t hurt the car and wind up in worse trouble.  She remembered that Maddeson Tersinar’s dad is a Toyota dealer in Cedar Rapids, (to read Maddeson’s story, go to my blog pages on Iowa), so she called Mr. Tersinar for thoughts on what could be wrong, and whether it would be safe to drive on to get to Birmingham on time to set up the quilt and meet FOX 6.  He went to his service team and they suggested we get a freon boost to get us to Birmingham, and then get it looked at in Birmingham.  OK, so a freon boost should solve it.  We were too optomistic.  We found a Firestone, and the guy was grumpy and said he wouldn’t check the freon and do a boost.  That was helpful.  We then searched for a Toyota dealer.  We found one only 10 minutes away, and mom called them to see if they could do a freon boost.  They were much more accomodating and said they could and would get us back on the road to Birmingham as soon as possible.  We went to the Toyota service department, and mom also asked them to top off all the fluid levels.  Ater a fair wait, mom went to ask timing and progress.  They told her that it wasn’t the freon.  There was plenty of freon.  They said it must be either the clutch or the compressor, and it would take a day to get the parts.  Well, waiting a day was not an option.  Roasting in a hot car on Rt, 20 for 12 hours wasn’t terribly appealing, but it looked like it was the only way to get to Birmingham on time.  The cause is more important than our comfort, so we would just have to deal with it.  Mom double checked with the Toyota service guy to be sure that regardless of whatever was wrong with the A/C, we wouldn’t hurt the engine driving it to Brimingham.
They said the car would be fine.  So at 3:30 pm we finally got back on Rt. 20.  This would be a long, hot day.
Mom stopped at the next off ramp to get us a bucket, ice, and washcloths to keep cool on the drive.  She filled the bucket with water and ice and I was in charge of resoaking the cloths in ice water for the rest of the trip.  Windows down, and iced cloths around our necks, we drove through Texas.  Eastern Texas was mainly brown fields of dried up grass and cows trying to find shade under trees.  I could sympathize.
As we got closer to Lousiana, we started seeing old oil derricks.  The ambulance chaser billboards were different than the ones at home in NJ.  I eastern Texas and Western Louisiana, they read: “Oil Rig Injury?”  There was even a picnic stop with oil derrick type structures over the picnic tables.  We didn’t stop though because at best we would be getting in at 3:30am, with a 6:30 am interview.  We pressed on through the heat.  We got to the Mississippi river and crossed into Lousiana.
Mom had planned to take a side trip to New Orleans to show me where she lived as a kid, and get some crawfish, beignets, jambalya, and hear some jazz and zydeco.  Because of the necessary and unavoidable trip to Seattle this week, that had to be cancelled.  She was sad about that when we got to Lousiana and I was sorry to not get to see New Orleans myself.
The first town was Shreveport.  It looked to me that Shreveport gets its revenue from oil and gambling.

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Lousiana!

Lousiana looked greener than Texas, and by now it was cooler too, only 95 degrees, but the car was still really hot because the engine heat was coming at us.  It was dark by the time we hit Mississippi, and since we had the sun roof open, I leaned back and looked at the stars.  There were a lot of stars and I enjoyed it.  Being alive is a gift.
We got to Alabama around 1:30 am or so, I think, I feel asleep by then.  We arrived at the hotel in Birmingham around 3:45 am, and got to the room at 4 am.  We set our alarms to be sure we were awake in an hour and a half to shower and get to the FOX interview and set up the quilt.
It was a long hot day, but we had made it.

Meet our Alabama Angels:

Hayden Leon Davis-Cano
7/25/2008 – 4/02/2010
Hayden

Lindsey Anne Steltenpohl
02/16/2005 – 08/18/2010
Lindsey Anne Steltonpohl

Lindsey was a funny, spunky and loving “girlie-girl”.  She loved all things pink and purple.  She loved to draw and paint.  She loved to play punch-bug, hide and seek and loved peace signs.  She had a wonderful imagination and a very loving heart.  Lindsey was always a happy, healthy child.  On 4-13-10, at the age of 5 years old, everything changed.  After a few months of very mild symptoms and a discussion about our concerns during her 5-year-old check-up, a C/T scan was performed.  We were told that Lindsey had a tumor in her brain-stem and it was inoperable.  DIPG was her official diagnosis.  We were told it was terminal and that despite our best efforts, she would not survive.  As a family we were blessed to enjoy 16 months together after her diagnosis.  We enjoyed many outings, trips and lots of cuddle time.  Even as she began to lose all control of her body, she still blessed us with her sweet personality and several laughs daily.  On 8-18-11, after a 68 day inpatient hospital stay, she passed away in her mother’s arms.  She leaves behind a mother, father and her only brother whom she called “Bubba”; along with many other family members and friends to mourn her passing.  Her smile, laugh and silly personality will always be missed.  She will be remembered and loved until the day we are able to join her in our heavenly home.

Robbie Tidmore
Robbie2 

Robbie Tidmore was 15 when he got his angel wings. He bravely fought (as they all do) that devil called leukemia for 5 years. He finally caught a glimpse of Heaven, and didn’t want to call this world “home” anymore. But Robbie wouldn’t want to be remembered for his valiant fight with his disease. Robbie’s friends would tell you that he was a sweet boy and a good friend that would always listen to your problems and try to make you smile. He tried to be happy and live a normal life amidst his pain. Robbie loved to hunt and fish with his stepbrother and stepdad, who lovingly called him “speedy” because the medicine made him move so slowly at times. He loved his Jesus and believed and trusted Him for his healing. It came, just not in the way we all wanted.  Robbie loved to play Little League baseball and played up to the last summer, even though he could barely swing the bat or run the bases.  His friends and teammates did it for him, so he could be part of the team. Robbie was a football manager for 6 years, and when he could no longer carry the coolers or run the football, the coach let him be the “head manager “and tell the others what to do.( Living in a small town has it’s advantages.) Robbie has been missed every day for 15 years as a son, brother, grandson, nephew. And as his mother, I wait eagerly to see him again…

Side Trip

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In Seattle Tuesday, August 6th. I hitched a ride with my friend Carol back to the hotel after the all-day meeting.

Eventhough it was bad timing with the Summer Tour, we had to take a side trip to Seattle for some unrealted business.  Mom and I left for Seattle, (via Houston), early Monday morning.  The Wades were really nice and volunteered to let us leave the car and trailer in their driveway while we went to Seattle.  We would fly back to Dallas to get the trailer and head off to the next venue in Birmingham, Alabama.  So we headed out around 8 am Monday, and went to the Wades to drop the trailer.  Mr. Wade ran us to the airport.  We learned that there is more than one airport in Dallas/Ft. Worth, and unfortunately went to the wrong one.  We made it to the right airport in time, but they closed the plane doors early and wouldn’t let us on the flight to Houston, so we had to sit around Dallas Love airport for another flight to Houston.  We finally got to Seattle and checked into a hotel around 7pm.  My dad flew in from NJ via meetings that day in Portland, Oregon, and got the the hotel a little after mom and I did.  We went to Etta’s for a late dinner of salmon and chowder.  Etta’s is near Pike Place Market and has incredible food:http://tomdouglas.com/index.php?page=ettas .  I really reccomend it.  It is one of Tom Douglas’ gazillion restaurants in Seattle.  I haven’t been to all of them yet, but I intend to!  I had the Rub with Love Salmon, and they don’t just rub and grill, it is smoked too, and gives it a really great taste.  When you get salmon in the paciifc northwest, you never want to eat any other salmon.
On Tuesday, we had a long meeting at an office in the Washington State Convention Center.  It was funny being there since we displayed the quilt in the WA Convention Center in April 2012.  So, we knew the building pretty well.  We were in a meeting from 9 am until 7pm, and then went for some salmon, again, this time at Art.  They have the most incredible mashed potatoes, they have dungeoness crab in them and call them “crab mash.”  Luckily I didn’t finish my salmon and crab mash and got it boxed up to eat on the plane back to Texas the next day.
We met my uncle around 10:30pm for a ride on the ferris wheel on the waterfront of Puget Sound.  It is a mini version of London’s Eye.  I rode on it last year around sunset and it is a great sight to watch the sun set behind the olympics from the ferris wheel while the ferries run back and forth to Bainbridge Island.
Mom and I had to catch a morning flight back to Dallas on Wednesday, so we said good bye to Seattle.  Wednesday, we headed to Sea-Tack in the morning and flew to Houston.  We had a two hour lay-over there and when we went to the gate to catch our flight to Dallas, we learned that our flight was cancelled.  Luckily we went to the United Lounge and they were able to get us on another flight to Dallas tonight.  We arrived after 10pm.
Mr. Wade picked us up from the airport and took us back to their house to get our car and trailer.  What a surprise, they had washed the car and trailer, and stocked up the cooler with drinks!  They had also picked up some other supplies for the quilt and trailer.  Wow, thank you Wades!
We got back to the hotel around midnight, did some laundry, and have to leave Dallas tomorrow morning to drive all day to Birmingham, Alabama to set up the quilt in Riverchase Galleria.

Ft. Worth – Day 3

Sunday was just as hot as all the days before. I was getting really tired from working all day every day, seven days a week while we’ve been on tour, so mom let me stay at the hotel on Sunday until break-down.

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Alexis’ aunt & cousin

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Alexis’ aunt and dad

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Friends of Beaux– and turns out their daughter babysits Angel Amie Cataldie’s niece and nephew.

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The awesome break-down crew in Ft. Worth: Jeff and Emily Wade, Jon Shaw, Amy and George Raub, and Renae and Rich Borel helped break-down in the heat and humidity. Awesome work guys! Thank you very much.

Afterwards, we went to have Tex-Mex with the Wades, Raubs, and Jon Shaw. Mom and Mrs. Wade drank about two gallons of iced tea. It was THAT hot.
We got back to the hotel later that night and had to pack to leave for an early morning flight to Seattle.
Thank you to Hulen Mall, to all the families who dropped everything to come help, and to all the folks of Ft. Worth who came by and learned more about kids cancer.  Thank you all very much.

Ft. Worth – Day 2

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Bryce’s brother, Wade poses with an image of Bryce on one of our banners.

 

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Amie Cataldie’s mom, Kristie

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Bryce’s brother builds a tower

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Beaux’s mom and aunts

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I talked with the camera man for NBC and Fox, and Mr. Borel, (Beaux’s dad), said a few words too.
Then he and their son Luke kidnapped me and took me sightseeing in Ft. Worth.  We saw the Stockyards and even went to a gun store… it is texas afterall.  Eventhough it was really hot, it was neat to see something of texas other than the inside of a mall.  Thank you Mr. Borel!

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Ft. Worth – Day 1

Friday August 2, first day in Hulen Mall, Ft. Worth, Texas.

We had loads of help from the familly/friends of Angels Rebecca, Bryce, Beaux, and Alexis!
Thank you to everyone for your enthousiastic help! It was 104 degrees in Dallas/Ft. Worth today.  I am glad we were indoors!

Four-Families
Rebecca’s mom, Emily; Bryce’s mom and dad, George & Amy; Alexis’ dad, Jon; and Beaux’s mom and dad, Rich and Renae were all able to pose for a four family photo!

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Rebecca’s Aunt and friend

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Gators in Texas!

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Bryce’s mom, Amy, stands on a chair to reach Bryce’s panel! The quilt is 13′ high!

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Alexis’ mom and sis :)

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Alexis’ Aunts

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Rebecca’s mom and brother

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Alexis’ Dad

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Beaux’s mom and dad

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Alexis’ family, including her mom, dad, grandmother, and sister.

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Texas!

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We’re in Texas!  We left Oklahoma today after doing some errands. We drove several hours to get to the next venue in Texas.  Oklahoma is far more forested than I expected, at least eastern OK is.  We drove through the tribal grounds of the Choctaw natives.  They are the most famous in history for the “Trail of Tears” when the federal government moved them to Oklahoma in 1830. But another fact many don’t know is that the Choctaw were the first “code talkers”– they were instrumental in WWI.

We started seeing ranches and a few small oil wells and arrived in Texas around dinner time.  There are too many highway overpasses and construction areas in the Dallas/Ft. Worth area. After getting off the wrong exit in the Dallas/Ft. Worth area, we found Hulen Mall in Ft. Worth and were happily greeted by volunteers to help with set-up!

Set-Up Crew!  Emily, Jeff, and Jon, (parents to Rebecca and Alexis), helped us set up Thursday night in Texas.  THANK YOU!

Set-Up Crew! Emily, Jeff, and Jon, (parents to Rebecca and Alexis), helped us set up Thursday night in Texas. THANK YOU!

Thanks to help from Emily and Jeff Wade, and Jon Shaw, we are set up and ready in Hulen Mall in Ft. Worth, Texas.  We’ll be here Friday through Sunday, August 2-4.

Please Meet our Texas Angels:

Zachary Isaiah Santos
12/22/2002 – 06/26/2006 

Zachary

Zachary Isaiah Santos was born on December 22, 2002 to Daniel and Deann Santos of Galveston, Texas. Zachary was born a chunky baby and was always considered as healthy until he was diagnosed with Stage II Wilm’s Tumor at The University of Texas Medical Branch in Galveston, TX on March 10, 2004. On March 15, 2004, Zachary had his right kidney removed and underwent several months of chemotherapy. He didn’t lose any hair or weight and never had to be admitted to the hospital within that time. We were told that Zachary was healed.

In November 2004, the weekend of Thanksgiving, Zachary had a limp to his walk in the right leg. When we took him to his pediatrician and some x-rays were done and the Dr. told us that he hated to have to tell us this and hesitated, but told us that Zachary had a mass growing on his right femur. We thought that the worst was over! How could this happen again to our child. We were devastated. Our world was once again shattered into pieces. That is when we knew that we had to take Zachary to an Oncologist in Houston, TX at MD Anderson Cancer Center. On Zachary’s 2nd Birthday, we were told that Zachary had Stage IV Neuroblastoma. Our hearts literally feel. How could parents be told this when their supposed to be celebrating their child’s second birthday? We knew that stage IV left Zachary more at risk of losing his life and through the tears of sadness and fear we kept our faith in God that Zachary would overcome this deadly cancer. Zachary went through several rounds of chemotherapy, blood transfusions and procedures and once more had a tumor removed from the area where his right kidney had once been. Zachary then went one more round of harsh chemotherapy and on December 15, 2005, Zachary had a bone marrow transplant. We prayed that with the bag of ‘rebirth’ a miracle would happen and cure our son. On June 26, 2006 Zachary earned his angel wings. He went to Heaven to be with God and the other angels that have passed away fighting cancer. Zachary was a loving and cheerful little boy that was full of energy and life. He touched the lives of everyone that knew him and those that have heard of his story.

Rebecca Lynn Boren
07/21/1999 – 10/08/2004

Rebecca

Rebecca was born on a bright morning, July 21, 1999, 7 lbs, 7 oz’s, 21″ long, our first child, and a beautiful little girl. She was diagnosed at 8 months of age, the doctor’s struggled to find a dosage of chemotherapy suitable for such a small child, and struggled to find a sure diagnosis. She fought hard through numerous rounds of chemo, radiation, experimental treatments, blood transfusions, surgeries, strokes, vision loss, all while struggling the road we all take to be a child- learning to crawl, walk, and talk. She was extremely gifted despite her issues, wise beyond her years, and shared her unfaltering happiness and infectious laughter with everyone she met. She loved the color purple, tea parties with Grandma, Sarah McLaughlin, Classical Composers, and The Beatles ( thanks to Grandpa ), she dreamt of being a ballerina, and of one day raising her own baby ( who at the time she promised would be named Dumbo ). Truly and Angel in every way, we lost our beautiful girl to her long hard battle just a few months after her 5th birthday, long before the days of her life should have ended. Her last breath will always haunt me, but her spirit is ever encouraging, and has taught me that no matter what you are dealt, you can always make the best of what you have. I love you always- Mommy

Griffin Yarborough
Griffin Kane Yarbrough

 

Christine Yvette Mazyrack
3/5/1987 – 6/2/2007

Christine Mazyrack

Christine was a 20 year old beautiful young lady.  She loved being involved with her church and enjoyed spending time with her family.  She was a faithful friend, loving daughter and sister.  She had dreams of one day getting married and having children.  She was excited about attending college and building a career.  She loved shopping and spending time on the computer chatting with her friends.

Christine was diagnosed with Osteosarcoma of the right femur in 1999.  She received chemotherapy treatments followed by countless surgeries. She battled the disease for eight years.  Even though the doctors had told us her survival rate was 5 years. She proved them wrong!

She fought hard and beat the odds many, many times.  She was courageous and had tremendous strength to endure all the pain and treatments.  She was cancer free for four years. Unfortunately, in December 2006 her cancer returned with a vengeance.  We were told the cancer had spread to her kidney and her pancreas.  She continued to fight, never losing her faith in God and believed for a miracle until the last minute.  She was taken from us on June 2, 2007, after an eight year battle.

Our hearts are broken. There are no words to describe the pain her departure has left.  We look forward to reuniting with her again!
We love you so much CHRISTINE!
-Mom

 

Bryce Kameron Raub
3/2/2009 – 1/6/2011

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For 674 days, 12 hours and 56 minutes, the world was blessed with the presence of a true Angel. After a long & brave battle with Rhabdomyosarcoma, Bryce earned his Angel wings.  Bryce courageously battled his cancer, for almost two years. He faced the challenges of aggressive treatment with strength and determination.  Most of us would collapse under the weight of these challenges. But, Bryce was so much more than his fragile little body conveyed.  Bryce accepted his challenge of cancer in the same way he accepted everything: with remarkable strength, tremendous courage and with an amazing spirit. His smile was like the sun coming out from behind a cloud, warming all that it touched.

Bryce conveyed more joy, contentment and hope than anything we could have imagined possible.  Bryce loved to play outside and dance to the music. Other favorite activities included swinging at the playground, watching TV, and playing trains. He loved snacking on M&M’s and French fries. He was a camera hog, and loved to ham it up for his fans, flashing an innocently mischievous smile and those piercing blue eyes.  Bryce’s life would seem too short to many, but those who were touched by him, understood that being happy and enjoying life far exceed the quantity of time in which you live it. His gentle smile, and big blue eyes, could melt the hearts of those around him and though he never spoke a word, he spoke louder than any of us ever could.

Beaux Lucas Borel
8/19/1995 – 8/31/2009

Beaux Borel

 

 

 

 

 

 

Beaux had just turned 14 when he got his angel wings.   He was a very content, happy, smiling baby who grew to be a kind, compassionate, funny, smiling, happy-go-lucky young man.  He was big brother and best friend to Luke and loved animals, especially his three dogs and a cat. Beaux was outgoing, well-liked, well thought of, and fun to be around.  He loved exploring the great outdoors, hiking, fossil hunting, camping, science, being with his friends and younger brother Luke, playing football, riding his bike, Xbox (particularly Halo), shooting his pellet guns with Luke from the front porch, funny movies, and SouthPark.  We all had a lot of fun and laughs together.

In Jan. 2007, we took Beaux to the ER for horrible stomach pain.  As the ER suggested, we followed up with his pediatrician who told us the “tumor” was most likely a “fatty tumor,” which was nothing to worry about.  However in March 2008, again Beaux was taken to the ER for horrible stomach pain.  This time they told us he likely had cancer that had grown much more over the last 14 months.  He had surgery, and it was found to be pheochromocytoma (pheo) cancer.  We were then told they had gotten it all.  A few months later, once again he was taken to the ER, and we were immediately transferred to a children’s hospital, where he fought for his life while beginning chemotherapy.  He continued chemo for a year.

The days he felt well were few and far between, but he didn’t complain.  Beaux was a very social creature who desperately wanted to be with his class at school, although he did receive many visits from friends and family at the house and hospital. Beaux will be remembered by all who knew him as a gentle soul.

Amie Alden Cataldie
01/15/1978 – 10/03/1982

Amie_Cataldie 

Amie was the older sister of Sam and Lindsie.  When Amie turned 3 years of age she complained of her ear hurting.  There was nothing to be found wrong with the ear, but about a month later, in May of 1980, Amie was found to have medullablastoma, a type of rare brain cancer on the base of her skull.  She had surgery and suffered a stroke during the operation.  The cancer was widespread in the brain and our precious baby, now in a coma was given at the most 3 weeks to live. The radiation would have been too harsh for her fragile state.  We brought Amie home and in that following October after many months of care, God gave us a miracle and Amie came out of her coma.  She learned to walk with a walker, talk and eat again on her own.  She was such a determined little girl and was years ahead of her time in mind and spirit. She was in the local Special Olympics and was so proud of her medals.  She showed us and the people around her that you can overcome any obstacle. Amie was always with her precious smile and loved playing with her little brother and baby sister. Her all-time favorite food place was McDonalds and she loved the beach.  There were many set backpacks along her battle with cancer and each time Amie told me that “I am going home” and she would in full force with that million dollar smile we all loved. But in early October 1982, her tumor returned to the original place and she was not able to have any more treatments.  Amie told me that she would not be going home.  Amie passed away peacefully and earned her angel wings on October 3, 1982, where she went home to God to live in peace and happiness and of course her million dollar smile.

 Alexis Teryn Shaw
04/12/96- 09/13/09

Alexis Teryn Shaw

Alexis was funny, silly, smart, sarcastic, sensitive, loving and kind. She loved music, animals, crafts, art, reading, playing games, friends and family. She had the most beautiful blue eyes and an infectious smile (she was always smiling!). She loved to laugh…I can still hear her giggles.  She was very petite and thin which made her appear fragile, but she had the heart of a lion.

Our family is not the same without her here with us. We miss her more with each passing day, but we are grateful for so many wonderful, happy memories that will sustain us until we are together again.

To Infinity & Beyond Lulu.
All our love,
Mommy, Daddy, Miranda, Tamara, Kayla, Nana, Papa, Mama and all your aunts, uncles, cousins and friends

Tulsa – Day 1 & 2

IMG_6731 IMG_6733KTUL Channel 8, (ABC) came to cover the story Tuesday morning.  The link doesn’t have the interview, but the story is here: http://www.ktul.com/story/22968738/angel-quilt-in-tulsa-teen-cancer-survivor-speaks-about-battle  Thank you to KTUL for getting the word out.
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Robbie Tidmore’s sister Nicole poses with his panel.  Nicole is the person who brought the quilt to Tulsa, because she found a venue for us as we were passing through from Kansas City to Dallas.  The Woodland Hills Mall was a great space.  Thank you to Nicole, and to Jodi Koch, Marketing Director at Woodland Hills Mall for hosting the National Angel Quilt!IMG_6736
Tulsa’s NBC Channel 2 Reporter Patricia Santos covered the Quilt Live from Woodland Hills Mall today, (Wednesday, July 31), and did a great job getting the word out about childhood cancer.  Many people came to see the quilt today because of her great coverage.  Thank you Patricia and NBC.  Here is her broadcast:

NBC ran the story a few times today, and it clearly had impact.  People came in to see the quilt.  The first visit was from a Make-A-Wish granter and Wish-Child, who were on a shopping spree for his Make-A-Wish.   The Wish-granter had seen the broadcast and made a point to come see us.  Mom was out on an errand, and she is the camera happy one of us, so I don’t have a photo.  If anyone is wondering if I had a Make-A-Wish, yes, I did.  I had been trying to figure out what the best thing I could ask for would be, and since I was pretty much unable to walk for about a year I wasn’t in too much of a rush to find the perfect wish to ask for.  When I got my corporate offices, (when I was 12), they really needed to be fixed up.  I knew I needed to make a good impression to be taken seriously when people came to the Make Some Noise: Cure Kids Cancer Foundation offices, so I asked Make-A-Wish if they would grant a wish to help fix up the offices.  They couldn’t do the whole space, but they did help in my office.
I was really surprised today when an incredible young girl named Jordan showed up with her dad and siblings. Her dad told us that Jordan saw the broadcast, and when her dad got home today, she insited he bring her to the mall.  She told him she needed to go to the mall to meet me and see the quilt.  Her dad is a good man for listening to her.  Thank you for going out of your way for kids cancer!  Thank you to Jordan for caring!  Jordan is in the center of the photo below.

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Jake, Jordan, and Jenna came to see the quilt because Jordan saw the news cast and told her dad that he needed to take her to the mall to meet me.

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Jamison Watters’ brother, sister, and cousins came to see the quilt today.

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The Watters Family visited the quilt to see Jamison’s panel.

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Robbie Tidmore’s niece and nephew came to see the quilt and posed for a photo with their uncle Robbie, whom they never had the chance to meet.

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Tevin Humphrey stopped by the quilt with his grandmother and built a tower that he says represents the strength of all the cancer warriors out there!

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Jamison Watters’ mom, dad, brother, and sister pose with Jamison’s panel.

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Thank you Tulsa!  Thanks to Nicole Griffin, Jodi Koch, the Watters family, Channel 8, Channel 2, and all the good people of Tulsa for taking time to hear about childhood cancer.
We broke down the display after the mall closed tonight, got a late dinner, and headed to the hotel.  Off to Texas tomorrow.