2 Years Ago

June 1st will forever remain in my heart as a very difficult day.  Two years ago today we were told that our 23 month old Erin's blood test showed abnormal cancer cells and that she had Acute Myeloid Leukemia.  

There is a very vivid slow motion movie in my mind of the first few hours of Erin's diagnosis, I almost wish I could show that to you so you could completely understand what it's like.

We took Erin's cancer on with brave faces and bits of humor (when we could find some), but I would never wish anyone to have to go through cancer with their child.  We had hearts full of faith and hope and we relied heavily on the atonement of our Savior to get us through.  It is an experience I would never want to repeat.  We are so grateful to have it behind us, and we rejoice every day that we get further from it.  

Erin has been in remission for about 18 months, we can truly breathe easily when she hits that 5 year complete remission mark when her chance of getting AML again is pretty much nil.  

Hear what Erin has to say....

You can donate

HERE

We have been fundraising for our CureSearch walk comping up at the end of the summer.  Very humbly we'd like to announce that right now our team is leading the entire state in fundraising!  Did you just see me do a jump kick?

Way to go Cache Valley Cancer Kids!!

We are only about $1900 shy of our $5000 goal.

I challenge you to donate $5 right now!

I double dare you!

Please, donate HERE.

100% of donations go to CureSearch. 

Benefit Concert!!

I'm finally achieving my goal to put on a Benefit Concert for Childhood Cancer Research.  I am thrilled to share the news that several very talented musicians have agreed to donate a performance!

Mark your calendar and come if you can.  If you can't make it, please consider donating to childhood cancer research in honor of Erin.

Cache Valley audiences will recognize Vanessa Ballam in her recent role as Maria, in the Sound of Music.  She spent three years as a Resident Actor at the Pacific Conservatory of the Performing Arts in Santa Maria and last year as a visiting professor of Theatre at Utah State University.  Vanessa currently serves as Education Director at UFMOT continuing the tradition of Arts Education in the lives of the youth of our Valley.  A former Miss Utah, Vanessa received the Bert Parks talent award while at the Miss America Pageant.

Pianist Brandon Lee has been thrilling audiences for well over 20 years.  Brandon has won first place in more than 40 state, regional, and national competitions.  He has soloed with the Utah Symphony three times and with orchestras in Colorado and California.  He has had the privilege of working with such artists as Leon Fleisher, Stephen Hough, and Olga Kern.

At the age of 8, Trenton Chang, won 1st place in the UMTA State Piano Concerto Competition.  In 2009 and 2011 Trenton was chosen to perform with the Utah Symphony in Abravanel Hall.  In May 2010 he was invited to perform the entire Mozart Concerto No. 23 in the Beverly Sorenson Young Artists.  This March, Trenton appeared on NPR's From the Top.  Trenton is enjoying 8th grade and loves to hike and travel.

Stefan Espinosa has appeared in theaters across the United States, from the central coast of California tothe Bayou's of Texas. Currently Stefan serves as the Conservatory Director for Utah Festival Opera and Musical Theatre where he also teaches acting and musical theatre classes.  This Summer Stefan will appear in leading roles in three OLRC shows including Huckleberry Finn from Big River.  

Sophie Spreier is in her second year studying Music Performance at Utah State University. Playing music has brought Sophie to audiences in Mexico, Canada, and multiple states with her favorite experience being a trip to New York City for a lesson with Yo-Yo Ma. Sophie aspires to become a freelance studio musician in the film industry.

Nicole Tolson began violin studies at age four and competed in her first National violin competition and was chosen to play at the Suzuki Association of America conference, five years later.  By age eleven, she was touring Poland, with a special performance in Prague and Poland. Throughout her teen years she performed in Florence, Rome, Siena, and Venice.  Nicole is a scholarship student at Utah State University majoring in violin performance and performed Tchaikovsky's Violin Concerto as a soloist with the Utah State University Orchestra in 2011.

Azure Kline is honored to be asked to take part in the support of children's cancer research. She started playing the cello twelve years ago, and over the years her passion for music has grown and developed into a life long desire to bless those who hear her, and to share God's love with them. Apart from playing the cello, she loves spending time with her family, hiking, and learning about the american constitutional system. Azure is a senior at Sky View High School, and currently a student of Anne Francis Bayless.

4 Days

Only 4 days until Erin's one year mark!

Today I'm thankful for

Childhood Cancer Awareness 

and the great organizations that have helped our family

Gold is the color for childhood cancer.

Orange is the color for Leukemia.

September is Childhood Cancer Awareness month.

We are thankful to CureSearch

Last year our Little Air Bear Team raised nearly $2000 dollars for childhood cancer research.  What I love about CureSearch is that they focus on the children and they give more to childhood cancer research than any other organization (as far as I have researched).

(Erin at the SLC CureSearch Walk, July 2010)

You can watch the video I made HERE.

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We are thankful for Make-a-Wish!

They gave us hope during some of the darkest times.  There were many days that I would sit and stare out of Erin's hospital room window and watch the world go by.  People were busy with places to go and things to do, but we were stuck in that little room while Erin fought through so much to stay alive.  Make-a-Wish somehow made many of those hard days disappear with the hope of something wonderful, our trip to Disneyworld to Meet The Princesses!

**---**

We are so thankful for Sky View High School

and all the fundraising they did to support Erin's wish.

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We are thankful for HopeKids!

 HopeKids provides activities for families with a child with a life threatening illness.  They give us something to look forward to, they are a big support group for families with cancer.

 

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I am thankful for

The Utah Moms With Cancer Fighting Cuties

support group!

 

It took me 3 months to make friends with other moms who had kids with cancer.  At first, I didn't want to make friends in the cancer world because I didn't want to be in the cancer world.  But then, as we got used to cancer life we decided we needed friends who truly understood what we were going through.  We needed friends who simply "got it" without the explanations.  

 

I am part of a group of amazing women, here is a picture of the first "cancer moms dinner" we had at Primary Children's Medical Center in 2010.

Now this group has nearly 150 moms in it.  We meet each month in various restaurants throughout Utah to have dinner and buoy each other up through tears and laughter.

Eagle Scout Project in Honor of Erin

This past year two young men, who live in our area, devoted much time and effort in doing their Eagle Scout Projects in honor of Erin.

Eagle Project #1

Ben Jewkes planned and organized a toy drive for Primary Children's Medical Center (where Erin was treated for Acute Myeloid Leukemia).  He took flyers door to door with requests for new toys in honor of Erin.  Here he is with some of the donations people left in bags on their doorsteps.

 

He sorted and boxed up all the toys.

He received over 300 toy donations and took them to Primary Children's.

Although Erin was through with treatment at this time, I wanted to post a picture of her playing with some toys that were donated to Primary Children's that she was given while in treatment.  There were some really difficult days that Erin endured, some days she would sob into her blankets and be in so much pain and feel so sick.  These days it was especially wonderful to get a new toy donation brought into her room.  At Christmastime, it seems there were so many toy donations, we got one almost every day.  

These cancer kiddos (and other sick kids at Primary Children's) really benefit from these donations.  When Erin goes to the lab to get poked for her blood draw or whenever she would get an ECHO or EKG or any other procedure done at Primary Children's she is given a toy as a reward for being brave.

She especially loves getting mini beanie babies like this lucky dog.

One of Erin's much played with toy donation surprises was a princess skirt and wand.

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Eagle Project #2

Trevor Jewkes focused his Eagle Scout Project on making dolls and blankets for Primary Children's Medical Center

With the help of friends, family, and fellow scout Trevor make 28 quilts ranging from baby to twin size.

They also made 10 fabric dolls complete with 38 hospital gowns.

He turned the blankets and dolls in to Primary Children's.

Erin received many blankets during each of her rounds of chemo. She got this pink flower fleece blanket just days after she was diagnosed with AML.  It still sits on her bed and she regularly snuggles in this blanket.

One fun blanket she got during a hard time with chemo was this "blow pop" blanket.

Here is Erin playing with a cloth doll, like the one's Trevor made.  The Child Life Specialist in the cancer ward gave Erin this doll (that someone made & donated) for her to "practice" the dressing changes on.  We used to do weekly dressing changes on Erin's Broviac (tube-ees as she called them) in her chest and it was often very traumatic for Erin.  It really helped her to play with the dressing change kits on her cloth dolls.  We even cut one of the dolls open a sliver and inserted a Broviac tube-ee into the doll so she could clean the tubes, just like we would clean her tubes.  It was very therapeutic for Erin to practice these procedures on her doll and it helped her cope with the pain she had to go through.

We are so grateful for all the people who have donated toys and their time in making blankets and dolls in honor of Erin.  Having your child diagnosed with cancer is very heart-breaking and the kindness of a whole community pulling together to lighten those burdens is so beautiful.  We want to thank Trevor and Ben Jewkes for their commitment to Scouting and for their thoughtfulness in honoring Erin through their projects.  We also want to thank all of those who have donated in one way or another in honor of Erin.

Thank you!

You want to visit Chili's on Nov. 7th

**Attention**

Logan

West Valley

Sandy

American Fork

Layton

This is your chance to help Erin!

Chili's is willing to donate 15% of sales to HopeKids!

Monday, November 7th

3:00pm - 10:00pm

 

PRINT THE FLYER

**For HopeKids to get 15% you MUST print this flyer and give it to your server** 

HopeKids offers continuous hope and support 

to families with a child with cancer 

or other life threatening illness.

A big thanks to Chili's!

The Creating Hope Act

Please feel free to pass this on

The Creating Hope Act is...

"...legislation that would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers, that have not been developed in decades because they are not profitable ... the Creating Hope Act of 2011 ... would expand the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases.  Since 1980, the FDA has approved only one drug for treatment of childhood cancer, compared to 50 for adults."
(Read more HERE on the Childhood Cancer Caucus Website)

Oh, boy! This is something we should be shouting out on our rooftops.

Finally, finally, finally something can be done to get more treatments for childhood cancer.

Our own Utah Representatives are not listed as supporting the the Creating Hope Act, but with a minutes time we could each hopefully get Utah's representatives in support of this important Act.  There is an easy on-line form that you can "fill-in" with a few sentences about why this is important to you and have e-mailed directly to our Representatives.

CLICK HERE 

to get to the online "fill-in" form

 

You can read the House Bill HERE

September is Childhood Cancer Awareness Month - pass it on!

Imagine cancer as a sinking boat, with all of us on-board.  Who do we care for first?  We get the women and the children to safety, right?  And we know that any grieving person would give up their seat to a child.  But, that is not true in the world of cancer funding.  What we have is first class seating, funding for adults. 

Approximately 12,500 children are diagnosed with cancer every year.

That's 34 children diagnosed every day!

Every year approximately 2,500 children die of cancer.

That's 7 children killed each day!

Childhood cancer is the #1 cause of death from disease for our children.

Every year it kills more than asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined!

When we talk of children we talk about the nearly 30% of our population that is under age 20.

It's September...are you seeing the GOLD?  Me neither...there isn't much out there, something must be done.

Gold is the color for childhood cancer.

September is Childhood Cancer Awareness month.  

The National Cancer Institute (NCI) is the Federal Government's principal agency for cancer research and training.  Do you want to see where some of your tax dollars are going?

Over the past 5 years the NCI has given

24% to breast cancer funding

5% to prostate cancer funding

5% to lung cancer funding

3%-4% to childhood cancer funding

I am sorry for anyone who has to fight cancer, my mother-in-law is just starting treatment for breast cancer and I've had other family members and friends who have fought cancer.  Cancer is an awful thing.  But, it is so wonderful that there are strong adult voices out there demanding a cure for adult men and women's cancers.  But, WE have to be the voice for the children.

It is amazing that breast cancer (if detected early) has a 99% cure rate.  Prostate cancer has a 5 year 99% survival rate.  Yet, we don't have those numbers for childhood cancer.  Erin's cancer has a 50% 5 year relapse rate.  Childhood cancer is typically more aggressive than adult cancer and children's bodies respond differently to "hand-me-down" adult chemotherapy treatments.  This why we need childhood cancer research, and lots of it.  

The more awareness and media attention = more funding.  

Please support the children!

Awareness is the key!

Please pass this on

Copy and paste my blog post to your blog, or direct a link to this blog post.

You can find more detailed information HERE on the People Against Childhood Cancer Site.

Our CureSearch Walk Success

We want to thank EVERYONE who donated to Team Little Air Bear.  I am so happy to announce that through many generous donations our team was able to raise

$1,921.00!

Thank you so much for your donation!

The Salt Lake City CureSearch walk group fundraising goal was $50,000...BUT we ended up raising a grand total of $72,497.00!

It's amazing what many people can accomplish.

Our family at the walk.

 

Team Little Air Bear

Salt Lake City CureSearch Walk 2011

 

The walk started out with opening ceremonies and each cancer survivor was able to stand up in front and say their name.  Then the cancer kids headed up the walk around Liberty Park carrying the "These Are The Reasons We Walk" banner. It was such an awesome feeling walking with so many people, there were over 1,400 people walking.  Our Salt Lake City walk was the largest walk that CureSearch has seen this year!  Way to go UTAH!

We had some fun during our walk.

Cris ran the kids around piggy-back style.

John's sister Diana and our niece Rachel also came along.

(Hey UofU fans...keep your eyes open at the women's basketball games for Rachel Morris, seriously one of the best basketball players EVER and my most tallest niece.)

We ran into some of our nurses at Primary Children's.

Aunt Diana on the left holding Erin, then Nurse Amber and Nurse Kathryn.

I will never forget Nurse Kathryn.  The day Erin was diagnosed with Acute Myeloid Leukemia Kathryn was the nurse next door to us, she saw me leave my room that night, she stopped me and she gave me the biggest hug.  I needed that hug so much and I have admired Kathryn's compassion ever since.

Princess Erin rode in her chariot most of the time.

The girls and their Little Air Bear shirts.

Erin leading the group.

 After the walk we met up for an awards ceremony where all the cancer survivors got a medal and hat.

Rachel Steele and Erin giving "five" with their medals.

Erin in her "Cancer Fighting Cutie" hat.

During the time that Erin was at Primary Children's we met 7 other families that also had children with AML.  Two of the seven of our friends have passed on, Tanner and Kim.  It was our pleasure to visit with Tanner's mom at the walk and watch her release a white balloon in honor of our dear friend Tanner.

We met up with Mikhael and his mom Rachel.  He is such a cute little guy.

Brielle (who made Erin the cutest christmas stocking last year). Brielle was wearing a t-shirt she made that said something like, "yes, I am a girl."  Ha ha!  I love her sense of humor on how all our kids' hair is growing back.

Autumn holding little Aubree who is still recovering from her bone marrow transplant.  She is one sweet little girl.

 

And, Rachel Steele.  The day we met the Steele's was such a blessing for us because we hadn't met any AML families yet, we felt so lost and alone until the Steele's became our friends. We were sad that Lizzie and Stew and their little Andrew's couldn't make it, hopefully next time.

I just cannot thank everyone enough for their generosity in giving to CureSearch in honor of Erin.  Our cancer walk was such a success and I am so thankful for all of the kind hearts out there who have helped in this fight to find a cure.  

If you're still looking for a way to help you can buy OtterPops...they donate to childhood cancer research...look for the gold ribbon symbolizing childhood cancer awareness on the box.  Gold - the new pink.

My cut for cancer

Today I was able to make a difference and give something back. When Erin was first diagnosed with Acute Myeloid Leukemia I contemplated shaving my head along with her. I saw a few parents who shaved their heads along with their cancer kiddos. A lot of dads do it, but not too many moms do for reasons we can all guess. I decided that instead of shaving my head that I would grow my hair out and donate it a year later. For some, I'm sure it isn't a big thing to just grow out their hair, but for me it was. My hair is so thick and it got so heavy and it started taking me 2 hours to let it air dry and it took forever to do. It was a sacrifice for me to do this, but I feel so much better having done it.

I made appointments for me and my girls to get their hair cut today. 

Erin was first.  She just got her edges trimmed up.

My five year old has also been growing her hair out, but she was really nervous this morning and she kept going back and forth about donating it or just trimming it. 

In the end she decided to just trim it because she didn't want the kids at school to not recognize her. She is still going to continue growing it out though, and when it gets really long then she wants to donate it. I have been really impressed by her courage to even want to donate her hair for a good cause.

Finally it was my turn.  I was a little nervous.

Just like that it was...chop chop chop.

10 inches.

I really like how it turned out.  It feels so much lighter and I love how it's not itching my neck.

A big thanks to Kristy Fairbanks at the Kutting Edge Salon in Logan for doing our hair today.  We LOVE Kristy!  My mom, sisters, me and my girls have all been going to her for many years.  She is a talented artist and she is so much fun to chat with.  Through some interesting circumstances we have also gotten to know Kristy's mom.  Make-a-Wish contacted Kristy's mom to ask her to make a princess gown for our little Erin.  It was really fun to figure out the connections between the amazing woman making Erin's gown and our talented hairdresser.  Our make-a-wish trip is coming up so soon.  We are all really excited.  Okay...we are way more than excited.  We talk about it everyday.  Everyday.

Join Team Little Air Bear

and help make a difference in

childhood cancer research.