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Candlelighters of the Inland Northwest

CANDLELIGHTERS FIRST-EVER

CHILDHOOD CANCER AWARENESS WALK  

IS ALMOST HERE!

 

August 28th at Medical Lake Waterfront Park on a paved walking trail - stroller and wheelchair accessible.

 

Pre-registration NOT required.

REGISTRATION FEE is an OPTIONAL donation of your choosing.

 

Please join us - we need you to make this a success.

 

Join us as we focus our attention on the youngest cancer patients.  See our special edition print newsletter dedicated to September and Childhood Cancer Awareness.

 

THANK YOU TO OUR SPONSORS:

 


   Ameristar Meats

 

The Matthews, Goldberg, and Reiber Families

 

 

In this issue:
IN THIS ISSUE

Cancer Diet Survey

From the Director

American Childhood Cancer Organization News (reprinted from ACCO newsletter)

Serving the Family When a Child is Seriously Ill

Peds Oncology has a Group Page on Facebook

Extending our Hand to New Families

Mark Your Calendars

A Little Help Goes a Long Way

Donate On-Line HERE

Candlelighters Office Moved!

In Loving Memory    

Candlelighters on Facebook and Twitter

Candlelight Vigil

Another Successful Inland Empire Motorcycle Coalition Ride for Kids with Cancer

Cancer Diet Survey

Researchers from Washington State University are conducting a study to learn about diet and relapse rates of cancer. See description below. We previously sent out this survey but is has now been expanded and placed on-line - Cancer Diet Survey.  The questionairre can also be found on the Candlelighters website where it can be printed out to mail in - Cancer Diet Survey Form. 

 

 

Participation is requested from children diagnosed with cancer and their parents. The study is also open to adults with cancer. The survey can be taken on-line or printed from our website and mailed in. Your feedback is important. The more participation – the better the conclusions! Please complete your survey today and share with anyone you know who can participate. Thank you!

 

 

The questionnaire is designed to investigate whether a change of diet during or after cancer therapy has a significant effect on cancer remission or relapse rates.  It is conducted by Prof. Dirk Schulze-Makuch and Marina Antonio from Washington State University.  Given the complexity of human diet and associated factors, the focus will be on a change in diet before, during and after cancer diagnosis and treatment.   

 

Several hypotheses will be tested from the hypothesis that (1) any diet affects are marginal compared to environmental conditions and life activities, and that (2) diet needs and requirements are distinctly different from individual to individual, to the hypothesis that (3) the relapse rates of cancer may be related to certain food groups such as sugars (e.g. simple carbohydrates) and (4) foods that include high amounts of growth hormones (e.g., certain dairy products and types of meats). The results will be analyzed using standard statistical methods to examine the significance of the obtained results. The more responses are received, the more conclusive the results will be.

 

The initial emphasis is on children’s cancer but the questionnaire is for all cancer patients.

FROM THE DIRECTOR

From the Director

As I have traveled through this world, I have spent many hours seeking perfection – mostly in myself and in my actions.

 

To seek to achieve perfection seemed a fool’s journey

because as we all know, perfection is outside the realm of human beings. I was compelled to strive for it nonetheless. What I have come to realize is that the error of my quest was that I was trying to make perfection a part of me rather than realizing that I am a part of it. Perfection is all around us.


I found it on a California beach bathed in hues of orange, and red, and purple and blue as the sun dipped into the ocean; I found it in the miracle of holding my first-born child snuggled safely in my arms; I found it as I held the hand of a dear friend who needed only to know she was not alone in her struggle; I found it as I said goodbye to someone that I love so much that I still feel the ache and pain of separation; I found it in a painting of a solitary tree so still and serene with the power to bathe me in tranquility.


I may not have always recognized the perfectness of those special moments while they occurred - especially the sorrow-filled ones. But I did recognize the importance of imprinting them in my mind. I thought that keeping them in my memory and sometimes even taking a photo could make them permanent.  But memories can be forgotten and few photos capture the essence of life.

 

Perfection by its very definition means completeness and in my mind completeness meant permanent. If something is permanent – it would last forever but those moments were carried away with the breath of time. I failed to see what has been enveloping me my entire life – it is always there just waiting to be recognized. I feel like the fish that finally sees the water in which it swims.


To hold on to perfect moments would require forcing time to be something other than it is – unchanging. Time is change.  Human beings are growing and refining. Nothing is static. 

 

Perfection is the fabric that we are clothed in – the layers that enfold and hold together all the changing. Completeness is found in every moment, every second, every breath. And every second, every moment, every breath moves into the next in such a way that it completes an existence that is forever there before us.


I know I can never comprehend the whole of creation. The idea of the vastness of billions of stars and planetary systems alone sets my mind reeling. When I try to understand the millions of processes that occur to create life – the cells, and atoms, and protons, and electrons, my mind moves from reeling to utter turmoil. But I have glimpsed slices of perfection. And those slices sustain and help me to understand and believe in a much greater whole.


 Since I completed our special edition newsletter for Childhood Cancer Awareness Month, two more children have passed. The sorrow of standing by helplessly as your child suffers and dies defies words. Somehow - these children have allowed us to glimpse perfection through them for a short time and I believe that they live on as part of the great fabric that holds us all.

 

American Childhood Cancer Organization News (reprinted from ACCO newsletter)

As you know, cancer treatment is not a quick or easy process. Children with cancer can spend from weeks to months at a time in the hospital. In there, and for most of the time they are at home during their treatment, these kids are usually in their pajamas.

 

"PJammin for Kids with Cancer" (or PJammin for short) is a pretty easy way for schools and businesses to show their support by paying a minimum of $1 per participant in exchange for the ability to wear pajamas to work/school for a day.

 

While this is a fun way to raise money, it's also a symbolic way to show support for the children who have no choice about whether or not they have to be in their pajamas all the time. Businesses and schools have access to all of the necessary planning materials at www.pjammin.org , and participants receive unlimited one-on-one support from the ACCO Program Director while they plan and host their event.

 

Last year, our first year for this program, schools and businesses across the country raised over $13,000.00 to support the funding of cutting-edge cancer research and the ACCO's publication of free cancer books.

 

**Remember, September is Childhood Cancer Awareness Month, and registering your school or business for a "PJammin for Kids with Cancer" event is a great and super-easy way to show your support!**

SACRED HEART CHILDREN'S HOSPITAL NEWS

Serving the Family When a

Child is Seriously Ill

Each fall, Sacred Heart Children’s Hospital offers a conference that is specifically designed to be an experience for professional healthcare providers AND parents and family members of children with illnesses to come together to learn how we can serve our children more effectively.


This year the focus is on not just the child who is ill but also the entire family that surrounds them. “I believe this conference will be significantly richer with the presence and wealth of experience that comes from the journey [families] have walked. Please consider attending this conference.

 

There is no registration fee for families.

 

Conference brochures are not yet available but be sure to SAVE the DATE and watch for more information.


There will be a panel of teen and young adult siblings - well children who have experienced the illness and, in some cases death, of a brother or sister in childhood. Krista Robak is putting together this panel and is looking for 14-30 yr old siblings who would be willing to share their experiences and answer questions about their experiences as part of the conference. You can contact Krista after the first of October at 509-474-2806, email: Krista.robak.providence.org. or for immediate attention contact Carolyn Ringo (see below).


If you would like to be included in email updates when the conference brochure becomes available, contact Carolyn Ringo at 474-5119 or email her at carolyn.ringo@providence.org.

Peds Oncology has a Group Page on Facebook

Sacred Heart Children’s Hospital Oncology/Hematology Families Facebook Group  for pediatric oncology families. The page was created and is administerd by Mindi Finch. She was inspired to start the page by the quote:

"To know the road ahead, ask those coming back." ~Chinese Proverb


Contact: Mindithemagnificent@gmail.com

if you have any questions.

NEW FAMILIES

Extending our Hand to New Families

Five year old Owen was diagnosed with ALL this July. Owen has one sister and two brothers, he lives here in Spokane with his parents Jason and Rachel. Some of Owen’s favorite hobbies include playing with dinosaurs, riding bikes, swinging and using his computer. His favorite color is blue.

 

Laela was diagnosed with a brain tumor in July. She is four years old. Laela likes SpongeBob, playing with her baby dolls and houses. Her favorite colors are pink and purple. She has two sisters and one brother. She lives with her mom and dad Jack and Tia’Rae in Coulee Dam.

 

This past April Tiffany was diagnosed with a bleeding disorder. Tiffany’s favorite color is blue, and she still loves her favorite stuffed animals. She likes horses and gymnastics. Tiffany lives in Ford with her mother Jennifer and stepfather Robert.

 

Emmett turned one year old this past May. He was also diagnosed with Neuroblastoma in April of 2010. Emmett has two older brothers and one older sister. Emmett likes playing kitchen, and listening to music especially “ABBA” and “Raffi”. He lives in Rathdrum with his parents Brian and Maren.

UPCOMING EVENTS

Mark Your Calendars

THIS WEEKEND

VOLUNTEEER OPPORTUNITIES

A Little Help Goes a Long Way

Donate On-Line HERE

Did you know that you can write in Candlelighters of the Inland Northwest as part of your United Way Giving?

 

We are a Combined Fund Charity.

 

Shop in Your Pajamas and Earn Money for Candlelighters

 


Check out our website to learn how to benefit Candlelighters through IGive, GoodSearch and EBAY too!

Candlelighters Office Moved!

The Candlelighters Office on the pediatric oncology unit has moved. We are now located outside of the in-patient unit on the hallway between the sun elevator and the in-patient unit. Kim Ward, pediatric oncology unit nurse manager, was previously in our current office and she has temporarily moved to the resource room located outside of the out-patient clinic.

 

Candlelighters’ former office will be a consult room and hold resource materials (including possibly at least one computer). This will make it much easier for in-patient families to have closer access to these important materials. Placement of a second computer is still being considered. Kim Ward (509-474-2778) welcomes suggestions from families.

 

Candlelighters office located on the main hallway will make our services more approachable for out-patient kids and families while still being close enough and accessible for in-patient kids and families. The toy box and snack baskets are still full!

 

Candlelighters has also opened a second office location at 10623 E. Sprague Avenue in the Spokane Valley to better accommodate volunteers and other activities outside of the hospital. We will begin holding our bereavement group there in September. The phone number is 509-443-4162.

In Loving Memory

 

 

Our sympathies are with the families whose children have recently passed away:


Five-year-old Makiah - 8/12/10 Parents, Jeremy and Bridget and brother Casimir

 

Two-and-half-year -old Tyler 8/16/10 Parents, Jason and Kristine

 

Eight-year-old Anna 6/29/10, Parents, Joe and Polly. Siblings, JJ. Katie, Maggie, Gus, Nate, and Abbie. (reprinted to correct error of leaving out some of Anna's siblings - we apologize for this omission)

 

  Bereavement Group

 

Next meeting September 9, 2010.

Watch for updated information

 

Candlelighters on Facebook and Twitter

Candlelighters has a Facebook Page and a Twitter Page.Families - upload a picture of your child.

 

Sadly we only have one follower on Twitter. So find us and follow along! CLINW

 

Is there a volunteer out there that wants to work our FaceBook and Twitter pages? We could sure use the help! Call 509-443-4162


Candlelight Vigil

We come together, united as one voice,  to fulfill our mission to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.

 

Join us on September 18th as we pass the flame of hope and healing to each other.

 

This event is open to the public.

 

THANKS AND ACCOLADES

Another Successful

Inland Empire Motorcycle Coalition Ride for Kids with Cancer

The Inland Empire Motorcycle Coalition staged its’ ninth annual benefit ride for families of children with cancer on Saturday, July 24.  It was already a bright, warm day when the bikers gathered at 8:30 AM for breakfast at the Eagles Lodge Aerie #2 at 6410 N Lidgerwood.  Organized this year by long time biker and coalition member Ed (Hopsing) Harris, there were over 50 participants that attended.  The riders checked in at 9:30 AM then lined up along Lidgerwood starting at Francis.  It was quite an awesome and inspiring site to see all those beautiful motorcycles lined up to go out and ride the highways for kids with cancer. 

 

Ed Harris and Margaret Kobylus

 

They took off on their journey at 10:00 AM and started arriving back at the Eagles Lodge at around 2:30 PM.  The coalition provided cake and ice cream, and Candlelighters provided cold drinks

and snacks.  Candlelighter families were invited to join the m

otorcycle clubs after the main ride for games and shor

t rides in the Eagles parking lot.  The Lautermilch Family was there to participate and spoke to the group about Ashlynn’s cancer experience and what Candlelighters has

meant to their family.  Event Chairperson, Margaret Kobylus, also told the group how much Candlelighers appreciates the fact that the motorcycle coalition has come back year after year with this event to support kids with cancer, because kids

cancer never goes away either.

 

Each of the participating clubs and a few individuals presented their funds raised for this years’ event.  The grand total raised was $3,492.00!  We would like to sincerely thank all of the following:

 

The Hi Rollers                                     Nord’s Electric Supply                    Panhandlers Riders

Roving Gamblers                              Eastern Evergreen Riders             NW Classic MC

Gold Wing Road Riders                  Inland Empire Victory Riders       Third Day Riders, CMA

John Dodgion                                    Richard Hentz                                    David VanBelle

Alfred Carlson                                   Joyce Kelley                                       Calvin Tucker

Nancy Jane Tucker                         

 

Candlelighters would also like to thank Mandy Roberts and Old Navy Spokane Valley Store for their donation of kids games for the event. Thank you to the Eagles Lodge Aerie #2 for the use of their facility for this event.  Thank you to our event volunteers, Connie Bunch and Mary Anne Ruddis.  We would like to extend a special thank you to Ed (Hopsing) Harris and his volunteers for organizing and carrying out a fantastic fundraising and FUN-raising event.

Candlelighters of the Inland Northwest • PO Box 8031 • Spokane • WA • 99203

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