Friday, September 9, 2011

Wednesday, August 17, 2011

Along the Road~

I walked a mile with Pleasure:
She chattered all the way,
But left me none the wiser
For all she had to say

I walked a mile with Sorrow
And not a word said she:
But oh, the things I learned from her
When Sorrow walked with me! -Robert Browning

Friday, December 31, 2010

2010- A year end review

Our inaugural year as a foundation has been a year of learning, growth and accomplishment. Through the valiant efforts of our supporters and our board, we have raised more than $35,000 for the battle against infant and pediatric cancer. I am proud of the variety of our fundraising efforts, from the Ironman event to grassroots bake sales. We have been able to directly assist 20 families who are experiencing the devastation of pediatric cancer. We contributed to research in a small way but it is our hope by raising awareness that we will be able to increase that amount in the coming years. Research is extraordinarily expensive but it is the key to a cure. There are general statistics regarding pediatric cancer and leukemia which indicates that survival is on the rise. Unfortunately, that is only snapshot of the overall pediatric cancer population. Outcomes vary widely for many different forms of leukemia, depending on age of onset, type of disease, biological and other risk factors at the cellular level. If you knew that in your lifetime you could help increase the chance of survival for a child with cancer, would you get involved? The reality is we can make a difference.


I am not sure why life has led me to this place and given the choice I would not have chosen this for myself. Life is messy and I am doing my best to accept my circumstances and turn something horrible into something meaningful and positive. Unfortunately, the alternative is to do nothing and that is simply NOT an option. I hope there is a cure in my lifetime, but at the very least, new treatment options will be discovered and the overall survival rates will improve for infant leukemia and all types of pediatric cancer. I want to be a part of making that difference and I hope you will join me.

The relentless pain of losing Evelyn is unending and during the holidays it is especially piercing. I have found hope in surprising new ways as a result of establishing this foundation in Evelyn’s honor. I have learned that love and grief are very much alike, they both have the power to forever change our lives. I am deeply moved by the love, support and generosity of others. I have discovered that my journey to finding some peace will involve helping families and children who are dealing with the unthinkable cruelty and isolation that is childhood cancer.

It has been a year of firsts and I look forward to 2011 and building on this foundation. None of this would be possible without the unfailing support of all of you. On behalf of myself, Brian and the entire EGF board, thank you to all of our sponsors, volunteers and contributors for your generosity and support.

I wish you health, hope and happiness during this Holiday Season and throughout the coming year.

I leave you with our 2010 Winter Newsletter to recap.

Spotlight on Philadelphia Marathon Runners Fundraising for Evelyn Grace Foundation

United by hope, compassion, and determination, six courageous women ran as supporters of the Evelyn Grace Foundation in the Philadelphia Marathon on November 21, 2010. The fundraising initiative was lead by Virginia native, Mrs. Chandra Wells, a childhood friend of EGF President, Bobbie Doyle. Chandra wanted to show her support in honor of Evelyn and she did so in a tremendous way! She recruited several fellow runners and created six personal fundraising pages on Firstgiving.com/EvelynGraceFoundation. As a group, they raised nearly $5,000 for EGF programs to benefit children and their families fighting cancer! We at the Evelyn Grace Foundation are so deeply appreciative of these ladies: Chandra McKay Wells, Kristie Myers, Marcy Hernandez, Robyn Mabes, Susan Rolfe and Traci Polumbo. Congratulations on your achievement and thank you for your support!








EGF Inaugural Research Grant

We are pleased to announce that EGF’s first research grant of $10,000 was awarded to Mattel Children’s Hospital UCLA. The award ceremony took place on December 13, 2010. The EGF research grant program is designed to supply funding assistance to primary investigators (M.D. or M.D./Ph.D.) for promising research. The 2010 grant will help fund the UCLA Nelson Lab, which sequences genes in leukemia cells and healthy cells to identify molecules that are necessary for targeted therapy. Leukemia, or “blast” cells, are compared to mutations in healthy cells. Gene targeted therapies are less toxic than traditional treatments. It is also more effective because it targets the source of the cancer while not compromising the rest of the body by eliminating the immune system. It is our hope that this research will bring scientists one step closer to a cure for infant leukemia. Our award is a small drop in the bucket compared to the significant need for funding in the areas of infant leukemia and pediatric cancer research. We hope to continue to bring awareness to this important research and provide future grants as our organization grows. We are committed and focused on research for less common and less curable pediatric cancers, specifically those that respond poorly to chemotherapy and radiation therapy. These children deserve a fighting chance!

From Left- Board Members- Bobbie Doyle, Mary Pifer, Lynn Kozasa, Elizabeth Hernandez. UCLA Division Chief Pediatric Hematology Oncology- Dr. Kathleen Sakamoto and Research Fellow- Dr. Vivian Chang

From Left- Bobbie Doyle, Brian Doyle, Dr. Kathleen Sakamoto and Dr. Vivian Chang


EGF awarded grant from Earl C. Sams Foundation

The Evelyn Grace Foundation is delighted to be awarded a $15,000 grant by the Earl C. Sams Foundation, Inc. This award will contribute to our Evie’s Bundle of Love program that provides care packages of support items to newly diagnosed children with cancer and their families. The care packages are filled with soft robes, plush toys, and gift cards for basic needs, such as food and gas. Evelyn Grace Foundation delivered ten Evie’s Bundle of Love packages to Mattel Children’s Hospital UCLA on October 15, 2010.





This generous grant will allow EGF the ability to increase the number of baskets we currently deliver to Mattel Children’s Hospital at UCLA and Children’s Hospital Orange County (CHOC) directly benefiting many children with cancer.

We are honored by the Earl C. Sams Foundation’s confidence in our organization and belief in our mission. On behalf of the entire EGF board and all of our supporters, we thank the Earl C. Sams Foundation for its amazing contribution which will allow us to reach out to children and their families suffering from pediatric cancer. We are truly appreciative and blessed by your support.


2010 Holiday Bake Sale – Saturday, December 18, 2010


The Evelyn Grace Foundation hosted our Second Annual Holiday Bake Sale in Seal Beach on Saturday, December 18, 2010. A variety of sweet and savory treats were available including artfully packaged cookies, breads, and cakes. Unfortunately, the weather did not cooperate but that didn't stop us from having the bake sale as scheduled. At the last minute, and thanks to the manager of Pavilion's grocery store, we relocated to the entrance of Pavilion's on Pacific Coast Highway in Seal Beach.

Also, a special thanks to Tammy Bowling, Sharon Scarborough and Shannon Miller for their fundraising efforts at the Pennsylvania bake sale.

All proceeds support Evie’s Bundle of Love, a foundation program which provides baskets of comfort items to children who have been recently diagnosed with cancer and their families. Pictured in this photograph is Eddie Carlos, a cancer warrior and a recipient of the Evie's Bundle of Love care package while he was hospitalized @ Children's Hospital of Orange County (CHOC) subsequent to a relapse from acute lymphoblastic leukemia (ALL) after having been in remission for 2 years. Eddie was first diagnosed at age 2. He is currently +187 days post cord blood transplant and we are so happy to see him feeling great and looking adorable!

The foundation also contributes to Mattel Children’s Hospital Holiday Adopt-A-Family program to provide gifts to economically challenged families who are affected by pediatric cancer. For the 2010 holiday season the foundation sponsored five families by providing gift cards to the parents for essential items such as groceries and household supplies, educational and comforting toys and clothes for the children.

Thank you to friends, family, colleagues and everyone who volunteered, participated, donated baked goods and came out to support us on a cold and rainy day. Because of all of you we had another successful fundraiser for the Evelyn Grace Foundation, raising over $1,200. Your contribution to our bake sale helped bring a smile to a family who is suffering this Christmas.


EGF Blood Drive in Support of Mattel Children’s Hospital UCLA

Over 40 EGF supporters donated their blood at the EGF Blood Drive held in Orange on September 10, 2010 in honor of Leukemia & Lymphoma Awareness and Childhood Cancer Awareness Month. This event, co-sponsored by EGF and GENEX Services, Inc., benefited Mattel Children’s Hospital at UCLA. Numerous blood transfusions are often needed during cancer treatments. During Evelyn's cancer treatment at Mattel Children’s Hospital, Evelyn required countless blood and platelet transfusions.



This gift of life saves many loved ones every year. If you feel inspired to donate blood, you do not have to wait for a blood drive to give this valuable gift. You can learn more about donating blood and platelets to Mattel Children’s Hospital UCLA anytime by visiting
http://gotblood.ucla.edu
.
______________________________________________________________________________
Would you like to get involved and support EGF?!

You can start your very own fundraiser by creating a page on FirstGiving. It is a simple and secure method of donating online. Firstgiving fundraising pages are the perfect tool to raise money in a fun and engaging way by involving your community in your event.

Time for holiday gifts or perhaps a gift for a special event such as a wedding, baby shower, birthday, or corporate function? Please consider Baking for Good, a bakery that gives back by donating 15% of proceeds to your selected charity. Evelyn Grace Foundation is proud to be listed as a charity onBakingforgood.com.

Need fundraising ideas? Send us an email at contact@evelyngracefoundation.org. We will be honored and delighted to help!
_____________________________________________________________________________
Join our team!
Partner with us - Sponsor a program - Volunteer
Contact Bobbie Doyle today!
_____________________________________________________________________________
Evelyn Grace Foundation
PO Box 463
Seal Beach, CA 90740
Phone/Fax: (562) 296-5347
Officers & Board of Directors (alpha order)
Bobbie Doyle, President and Director
Brian Doyle, Vice President and Director
Elizabeth Hernandez, Esq., Director
Alan Ikeda, M.D., Director
Lynn Kozasa, Treasurer / Director (Programs)
Mary Pifer, Secretary / Director
Jennifer Schrack Dempsey, Esq., Director
Tracy Lovric, Esq., Director (Grant Writing)

Wednesday, September 1, 2010

Childhood Cancer Awareness Month


Did you know that September is Childhood Cancer Awareness month and National Leukemia Awareness month?

I probably would not have known..........but then my only child and newborn baby girl was diagnosed with an aggressive form of leukemia. So I wonder now, how does it feel to someone who hasn't watched their child suffer for months at a time with hardly a glimmer of hope that she might survive. How does it feel to someone that has not walked the hallways of a pediatric cancer unit? I don't know what that feels like. I'm not that person anymore. I think I have always been empathetic, tried my best to understand the pain and suffering of others but I wonder did I do enough? Did I say the right thing? Did I take action?

So here it is...I am just one woman trying my best to be heard. I would scream at the top of my lungs, if I thought everyone would pause for a moment to hear me. I am not rich. I do not have an empire behind me that can spread my message to the world. I do not have access to celebrities and lavish resources. I am nurse. I work full time while creating and expanding a non-profit charity. I am a mom to a child in heaven. I am a wife, a friend, a sister and aunt. I am one person trying to create a social medium by whatever method I can to spread awareness that CHILDREN are getting cancer everyday and we don't know why! Childhood cancer strikes regularly, randomly and spares no ethnic group, socioeconomic class or geographic region. Despite all of the facts, research is vastly and consistently underfunded. Without research there is no hope for a cure.

I am fueled by my love for Evelyn and visual images of her pain and departure from this world that haunt me everyday. I cannot sit quietly and do nothing. But I cannot do it on my own either. So I hope you don't mind hearing from me. I hope you won't delete my emails. I hope you will take the time to read about the Evelyn Grace Foundation programs on our website, read the EGF Facebook updates, tweets (yes "tweets" I will do whatever I can to spread our message- follow us at Evelyngracexoxo) and newsletters.

I hope you will join me, in supporting childhood cancer awareness whenever you can in whatever way you can. I want you to know that it is greatly appreciated.

How can you help this month?

EGF Blood Drive- in support of Mattel Children's Hospital UCLA- September 10, 2010 8am to 1pm.
1717 W. Orangewood Ave. Ste G
Orange, CA 92868
To schedule an appointment contact Pamela Ritchhart at 661-313-4188 or email contact@evelyngracefoundation.org. We need folks to sign up right away. If we do not have a minimim of 40, the mobile blood unit will not come to our location.


With just a few computer clicks everyday through September 30th, you can help EGF win a $25,000 grant to fund 1 year or 120 Evie's Bundle of Love Care Packages. The Care package is given to a child currently hospitalized for cancer treatment or bone marrow transplant at Mattel Children's Hospital and Children's Hospital of Orange County. Vote for Evelyn Grace Foundation everyday by computer or text- 102140 to Pepsi (73774). Help us spread the word by forwarding the link to your friends and family. You can Vote below by clicking "Vote for this idea."
There are a few simple steps to follow. The first time you must sign in to create a Pepsi Refresh account with a password. After this step is completed you can vote everyday by simply clicking on search icon- type in "Evelyn Grace Foundation." Click "Vote for this idea."

THANK YOU!



What's in the Evie's Bundle of Love?

Eco Friendly Monogrammed Bag
Soft Blanket or Cozychic children's robe
Plush Toy (Pillow Pet or Zoobie Pet)
Hat (Crochet flower hat provided by www.Fabowlous.com)
$50 Gasoline Gift Card
$50 Grocery Card or Hospital Meal Coupons
File organizer to store medical information

Friday, August 13, 2010

Elegance of the Hedgehog

I was reading the book "Elegance of the hedgehog" a few weeks ago and as I closed in on the final pages I was struck by how beautifully the author described the pain of losing someone you love. (losing a child-multiply the pain by infinity) I feel like capturing it here, so I don't forget.

"For the 1st time in my life I understood the meaning of the word NEVER. And it's really awful! You say the word a hundred times a day but you don't really know what you're saying until you're faced with a real "Never Again." Ultimately you always have the illusion that you're in control of what's happening; nothing seems definitive."

"But when someone you love dies......well, I can tell you that you really feel what it means and it really hurts. It's like fireworks suddenly burning out in the sky and everything going black. I feel alone and sick, my heart aches and every movement seems to require a colossal effort."

Tuesday, June 29, 2010

Tear Soup


Tear Soup


So here I am.... still learning how to handle my emotions, my grief, and my pain. I struggle because I try to assume the role of pretending I am “okay” because that is easier for people to deal with, it’s an uncomfortable space to be around someone who is suffering. I want to protect the people around me by being strong and putting on a brave face. I don’t blame anyone for this because it is just part of who I am. Whenever I am happy or laughing or find a moment of peace I am so appreciative. I want to cling to it, so it does not disappear.


So the blog has sat quiet. I haven’t been able to find the words. I have been feeling unsure if I have anything to say anymore. I have been in a dark place, not a place I wanted to invite anyone in to join me. I like the quote, “if you don’t have anything nice to say, say nothing at all.” Well, that is essentially how I have been feeling. After Evelyn went to play with the angels, I mentioned that I was leaving the blog for her, to remember her and that I would not post often, occasionally for Evelyn Grace Foundation activities and other random thoughts from me. So, today here are some random thoughts from me.


There is a children's book called “Tear Soup” - A recipe for healing after loss.


I’ll quote a few paragraphs from the book, to give you an idea how I have been feeling...


“She put on her apron because she knew it would get messy,

It seems that grief is never clean. People feel misunderstood, feelings get hurt and wrong assumptions are made all over the place.


To make matters worse, grief always takes longer to cook than anyone wants it to.

And then..

Grandy started to cry.

At first she sobbed.

Sometimes she wept quietly.

And sometimes when she was in a safe place where no one could hear her...

she even wailed.”


I’ve noticed that some people disappear........some people don’t and those bonds and friendships grow stronger. It is a sad truth, often we don’t just lose our loved one, there is more loss and destruction as the journey unfolds.


I am missing my baby girl so much. I think about her constantly throughout the day, when I go to bed, thoughts and images of her run through my mind and when I wake she is my first thought. Sometimes I replay the difficult days over and over. I can still remember so vividly how I felt walking along side her crib as we went to surgery for yet another lumbar puncture with chemotherapy. As I walked along holding on to a piece of her crib, passing people in the hallway, they would give that look of pity and it made me so sad. I know their intention was good, but I remember thinking, is this really happening? Then I would walk alone back to her room, down the long hallway of the 3rd floor hematology oncology unit - entering the quiet room, empty without the crib and beeping monitors. I would sit and cry in disbelief every time. Then, about an hour later, I would hear the voices of the surgical nurse and anesthesiologist pushing her crib and monitors down the hall toward the room. I would hear her cry. I could recognize her cry a mile away. I was so happy to see her but so devastated because I knew that was not the last time. I knew life would never be the same. All I wanted was for Evelyn to somehow miraculously beat this disease.


Thoughts replay over and over in my mind of Evelyn’s final days and hours. It haunts me. I see visions of her of swollen face and body, the shallow breaths with long pauses in between each breath, wondering was that her last, then a great relief when she would inhale again. I can’t turn it off in my mind, I lay in bed thinking of her. Was she in pain? In my heart I know she was being consumed by that warm beautiful glow from heaven? I felt it in the room. It was truly miraculous how she waited for everyone to arrive- flying in from all over the country. She was so strong, even facing death, she waited for a calmness to descend upon the room. Everyone so exhausted after 3 days of being awake, they scattered about to catch a few minutes of sleep. It was just she and I cuddled together in bed, my breath with hers and I listened and held her close until I drifted off to sleep and then her beautiful little spirit floated away.


A few weekends ago, on Father’s Day, I went to the beach to relax and read a book on a sunny weekend afternoon. As I was riding my beach cruiser towards the ocean, the breeze in my face, it felt nice and I appreciated this life, the fact that I could get on my bike and go the beach for a few hours, that I was lucky enough to do that. When I settled on the sand, I thought of Evelyn and how I had envisioned her first time at the beach. Last summer as she lay in the hematology/oncology unit fighting for her life, that was supposed to be the summer I dressed her in her first pink baby bathing suit. The summer we watched her play with the sand in her fingers, dipped her cute little toes in the water for the very first time. So I had images of all of this going through my mind. I watched another couple with their baby, down by the water taking pictures. Then I thought of my Dad and I wondered how different life would be if he were still here. I said a little prayer and thought of my Dad and Evelyn together. I could see my Dad making her laugh and carrying her on his shoulders as they walked along the waters edge of a beautiful beach in heaven.


Okay, now I am crying tears the size of Texas. I hope this is good therapy for me.......


Why is cancer a monkey on my back? Am I destined to lose everyone I love to this dreadful disease? Today I was at the Veterinary Cancer Group of Los Angeles. My dog, Yogi is kicking cancer’s ass right now! He was diagnosed with a soft tissue sarcoma about six weeks ago. He is being treated with 22 rounds of radiation. We are taking him to the radiation oncology vet in Culver City 5 days a week for 4 1/2 weeks. Each time he has anesthesia with radiation to the region where the sarcoma was surgically removed. I thought of Evelyn as I sat in the waiting room. I heard a few dogs whimpering today and it made me so sad. Again, I said to myself, “REALLY?” Now I am watching these dogs come in and out for their chemotherapy or radiation treatments. It’s hard to find words to describe the feeling. It’s just sickening! If cancer were a physical object, I would become a raving lunatic, pulverizing it with every ounce of my strength. The good news is Yogi is battling his cancer like a champ. He is my first baby and we are not about to lose him, so we fight on!






I still have the “WHY” moments. Just when you think it can’t get worse....

A new low...how did this become my life? Why did this happen to us? Why was Evelyn taken away and by such a cruel and vicious disease? Why did she have to suffer? Why Why Why? But then I get a grip and realize there is NO ANSWER. I can’t torment myself with a question that has NO ANSWER!


Maybe if God came in stood in front of me and asked, “Why do you think?” Perhaps I would feel compelled to come up with a response... I would say, “It happened because we are mortal and bad things just happen sometimes for no good reason but it has given me a feeling of grace.” Not just any old grace, but the kind of Grace one receives from the despair of watching your child suffer and ultimately die. That pain brings you to your knees, as there is nothing in this life that is worse.


So because of God’s Grace, I am hopeful for brighter days. I see life so differently and for this I am grateful. It is bizarre that from something so retched and awful you can learn and find something good in it. Everything in my life has new meaning, new purpose and clarity. I am blessed that Evelyn brought so much good to the world in her short time. She helped parents love and cherish their children even more. She brought people together, to unite and fight against pediatric cancer. It is my hope, that through the Evelyn Grace Foundation, you will continue to remember her, honor her battle against leukemia and fight on for other children and families affected by cancer. This is the Grace that has been bestowed upon us, to offer love, kindness, mercy and favor to serve others through Evelyn. This is now my journey.


In closing - more Tear Soup.......


“I’ve learned that grief, like a pot of soup, changes the longer it simmers and the more things you put into it. I’ve learned that sometimes people say unkind things, but they really don’t mean to hurt you.’


“And most importantly, I’ve learned that there is something down deep within all of us ready to help us survive the things we think we can’t survive.”


This is Life. Whatever is done to us, whatever happens to us, we must face it. I am trying my best to face it with grace, to be strong, and to make a difference.