Evie's Blog

2011-09-09T12:27:00.000-07:00

2011-08-17T14:15:00.001-07:00

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

A Tribute to Evelyn and All The Children Gone Too Soon

2011-07-29T15:10:00.000-07:00

2010- A year end review

2010-12-31T14:42:00.000-08:00

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!

Bobbie@EvelynGraceFoundation.org

_____________________________________________________________________________

Evelyn Grace Foundation

PO Box 463

Seal Beach, CA 90740

Phone/Fax: (562) 296-5347

www.EvelynGraceFoundation.org

contact@EvelynGraceGoundation.org

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)

Childhood Cancer Awareness Month

2010-09-01T13:04:00.001-07:00

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.

Pepsi Refresh Project- www.refresheverything.com/evelyngracefoundation

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

The Band Perry

2010-08-13T16:11:00.000-07:00

I love this song, it's so beautiful. I think some people may find it a little morbid but I think it's lovely.

Elegance of the Hedgehog

2010-08-13T15:38:00.000-07:00

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."

Tear Soup

2010-06-29T18:20:00.000-07:00

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.

Ironman 70.3 Fundraiser

2010-04-11T22:32:00.000-07:00

Evelyn Grace Foundation-first fundraiser for 2010 was the Ironman 70.3 in Oceanside, CA on March 27, 2010. I want to thank so many folks for your incredible support, donations and kind messages! I, along with board members Elizabeth Hernandez and Mary Pifer, successfully finished the Ironman event. It was an incredible experience on so many levels. I felt Evelyn with me the entire way, giving me strength and protecting me. Thank you for cheer leading, for sponsoring us and for helping the Evelyn Grace Foundation raise funds for our programs and for research at UCLA Mattel Children's Hospital. The total amount raised from this event was $8,500. We are excited to get our programs launched and to move forward to our next event.

Ironman Photos-click here

A special thanks to:

Randy & Vicki Haringa

Michael & Lee Doyle

Sharon Ramirez

Rosanna Mangini

Allana Wiley

John Harper

Michelle Lindenmuth

Michael Keegan

Melea Keck

Amy Calderone

Shelley Campbell

Traute Winters

Robert Snow

Ron Skrocki

Dr. Scott Rackett

Karynne thim

Tammy & Andy Bowling

Katherine DiBernardo MacDonald

Bud & Suzie Wendorf

Joel Hornburg

Beth Rivette

Gerritt Gehan

Jean Caldwell

Lisa Claybaugh

Dr. Michael Burdi

Pam & Gary Schrack

Matthew & Sarah Doyle

Rachel Pifer

Tracy Lovric

Andrew Pifer

Pamela Ritchhart

Eric & Aoy Hehl

Schadell Elizalde

Elizabeth Hernandez

Heather Campbell

Margaret Otto

Jeanette Thomas

Terry Sisco

Olga Hernandez

Michael Carter

Carolyn Moomaw

Arthur Grofsky

Barbara Tomblin

Brad & Annie Lacey

Care2Fund

Philadelphia Insurance

Stanley Jakubowski

Kristin Binder

Barbara & Roger Orsie

Dana McClure

Noel Reyes

Candice Donahoe

Ellen Hicks

Dustin McClellan

Angela Houston & the Midwest UM Branch

Mara Roth

Kim Neff

Leslie Pifer-Pien

Dr. Michael Weinstein

Virginia Hehl

Ashley Kim

Juan Jauregui

Shelly and Brian Leinbach

Stephen Smith

Marcia Oto of Hey Baby Embroidery

JR Lands for printing logo on jerseys

Ripe Media-EGF partner

Fabowlous.com- EGF partner

Evelyn's 1st Birthday

2010-04-11T12:23:00.000-07:00

March 19, 2010- Evelyn's 1st birthday. It was a difficult day but I was determined to celebrate Evelyn and not allow self pity and sadness to consume her day. I reflected on her birthday, found myself in a puddle of tears numerous times throughout the day, but that is okay, sometimes I just need to let it flow. I recall the excitement and all the beautiful possibilities I felt when I realized I was in labor and my sweet baby was really going to be here! How can the best day of my life turn out to be the worst day of my life- all in an instant? Well, actually the 2nd worst day of my life....realizing she was not healthy-a few weeks later my worst fears realized that she had leukemia. The worst day of my life was actually when I had to let her go. Life is so precious, nothing is guaranteed, everything can change in an instant. Evelyn's Birthday post from March 2009-click here.

A year has passed but the pain is still piercing and I imagine it always will be. The heartache and tears sneak in when I stop long enough to really think about everything Evelyn endured and how much I miss her everyday. Being near the ocean or on the water always brings comfort to Brian and I, so we took a small boat out before sunset with two friends, I had a ladybug cupcake for her and a Happy Birthday balloon with a letter to Evelyn attached. On the boat at sunset, a beautiful sky, we released the balloon together and watched it drift away into the blue sky. We made a wish and blew out 1 candle on her cupcake. Miss you so much sweet baby Evelyn.

Missing You

2010-03-18T21:22:00.000-07:00

Evelyn's 1st birthday is tomorrow, March 19, 2010.

In some ways it feels like a life time ago simply because all that we have endured since the day you were born. I feel like I have traveled in a time capsule through feelings of joy, fear, grief and despair in such a short period of time.

My love for you is profoundly eternal, you are with me, I carry you in my heart every moment of every day. The purpose of my life is infinitely more clear because you are my daughter, because of your journey, no matter how brief your time here with me. I carried you for nine months. I knew you then, felt you move, loved you deeply. Then finally I got to see your beautiful little face, hold you in my arms and my life will never be the same. So now you are gone, you have entered eternal life and I know you will be waiting for me. I hope that in heaven time is irrelevant, so the day we meet again, you will not know how long we were apart.

If only we had one more day..... I often wonder but that would leave me wishing still for one more day with you.

Good night my sweet.

Faith lifts the

staggering soul on

one side,

Hope supports it on

the other,

Experience says it

must be-

and love says

let it be.

Elizabeth Ann Seton

A Valentine for Evelyn

2010-02-14T09:35:00.000-08:00

Missing Evelyn on what would have been.....her first Valentine's Day

Running For Evelyn

2010-02-08T16:41:00.000-08:00

Will you join me in the fight against Childhood Cancer?

2010-02-04T10:17:00.000-08:00

Dear Family and Friends:

Will you join me in the fight against Childhood Cancer?

I’m taking on a new challenge and would greatly appreciate your assistance in helping me to reach my goal. I will be participating in the Ironman 70.3 in Oceanside, CA on March 27, 2010. This event consists of a 1.2 mile swim in the ocean, 56 mile bike ride and 13.1 mile run. You may think I’m crazy for wanting to compete in this event, but let me take a moment to explain why.

My daughter, Evelyn Grace was born on March 19, 2009 after a healthy and uneventful pregnancy. Just three weeks later she was diagnosed with leukemia.

On April 10, 2009 after a dermatology consultation and blood test at UCLA, we received the phone call that would forever change our lives. We were told that Evelyn had an "extremely elevated WBC count and there is concern of blood malignancy." The CBC revealed a WBC count of 266,000 (86% blasts), Hg/Hct 15.7/48 and platelets 69,000. We later learned the purple lesions on her skin were in fact an extremely rare condition called leukemia cutis.

At just 22 days old, Evelyn was diagnosed with congenital infantile high risk ALL, Pre-B Cell, MLL rearrrangement 4:11 (translocation 11q23), positive CNS disease.

Evelyn was admitted to the UCLA Mattel Children's Medical Center PICU. She immediately underwent surgery to place a central line. A blood transfusion exchange was performed and two rounds of hemodialysis. She was started on chemotherapy protocol POG9407.

Evelyn achieved brief periods of remission. Those were the most glorious days. I had hope that she would be our miracle baby. I prayed that she would defy the odds.

Evelyn relapsed on July 9, 2009. Once again we had the dreadful and devastating conversation in which we were told that Evelyn would likely not survive and that her odds had further decreased. There was only one hope and that would be reinduction chemotherapy and cord blood transplant. A more intensive chemotherapy regimen was started on July 9, 2009. The reinduction would need to get her to remission long enough for her counts to recover without reoccurrence of leukemia then take her immediately to TBR (total body radiation) and cord blood stem cell transplant. She fortunately had a cord blood match which was awaiting her, frozen at UCLA Medical Center.

Evelyn could not achieve remission long enough to make it to transplant. She would end up back in the PICU battling a severe blood infection. She bounced back quickly after the appropriate IV antibiotics were administered. We returned to the pediatric oncology floor but soon after, Evelyn’s condition began to rapidly deteriorate.

The morning of August 11th, I was alone with Evelyn. When she woke, I lifted her from the crib to rock her as I did every morning. I noticed the lesion on her head. It was the same location that had appeared when she relapsed the first time. I was overtaken with emotion, alone in the hospital room I knew the disease was too aggressive, returning faster and more severe each time. My sweet and precious Evelyn could not fight any longer. A skin biopsy of that lesion confirmed a 2nd relapse on August 13, 2009.

Evelyn lost her hard fought battle with leukemia and ascended to heaven on August 16, 2009 @ 4:45 am. It is difficult to provide adequate words to express the devastation of losing her. On this journey my faith has lead me to some level of comfort that she no longer suffers, will live eternally peaceful and I will be reunited with her.

Congenital leukemia occurs at the rate of 1 per 5 million births. When I learned how rare her condition was, I thought WHY?! It was and is truly incomprehensible. Sadly, infants have a much poorer prognosis than the general pediatric population. Approximately 13,000 children are diagnosed with cancer each year, an estimated 3,500 are diagnosed with leukemia. Cancer is the most common disease related cause of death for ages one to 20.

I made a promise to my daughter that I will challenge myself by participating in running, cycling and triathlon events in an effort to increase awareness, raise money for pediatric cancer research and to help other children and families affected by pediatric cancer. I will continue to fight for Evelyn and countless other children.

I have started the Evelyn Grace Foundation in honor and memory of my daughter Evelyn. A non-profit 501(c)3, tax-exempt, charitable organization. You can find us at evelyngracefoundation.org or click on the logo on the blog home page.

I am specifically interested in assisting to raise funds for a research- Genome Project at UCLA’s Nelson Lab and the Division of Pediatric Hematology/Oncology at Mattel Children’s Hospital UCLA.

UCLA’s Nelson Labs plans to sequence all genes in two of Evelyn’s bone marrow samples and also sequence her normal genomic DNA in order to completely characterize all mutations that occurred in the generation of her leukemia. This will be the initiation of a larger project to comprehensively understand this form of cancer and delineate the cellular components that need to be mutated to lead to the cancer. The identification of the mutated genes will ultimately reveal the mechanism resulting in infant leukemia and lead to new treatment strategies.

It will cost $60,000 to sequence each patient’s DNA, and the more that can be done, the greater the impact this study will have. For questions regarding this research project or to make a corporate sponsored tax deductible donation directly to UCLA please contact Erica Edwards, Associate Director of Development at Mattel Children’s Hospital UCLA at (310) 267-1836 or eedwards@support.ucla.edu.

I hope that you join me today in supporting my cause. I am comforted by the chance to make some sense of the senseless suffering Evelyn endured as a result of her leukemia. Your donation will help support families affected by childhood cancer and to help fund research to shed light on the mystery of infant leukemia, advance treatment protocols and increase the odds of survival.

Donations to Evelyn Grace Foundation are tax deductible.

Tax ID 27-1648855

You can donate by sending a check to:

C/O Evelyn Grace Foundation

PO Box 463

Seal Beach, CA 90740-0463

562-296-5347

Hopefully, one day, researchers can find a cure for cancer so that no one else will have to suffer or experience the devastation of losing a loved one to this horrible disease.

With Love and Appreciation,

Bobbie Doyle

Look for the Signs........they will come

2010-01-31T22:07:00.000-08:00

Today I had a sign.........

I set out for my 10 mile run this morning preparing for our fundraiser 70.3 Ironman in March. I was running along the bike path in Huntington Beach. I began approaching a father carrying his child. The child was looking over her dad's shoulder, watching me as I jogged closer with each step, her eyes were locked in watching me so it caught my attention. As I was close and about to pass her she said "momma, momma" and pointed her finger at me. Her dad looked puzzled and turned around to look at me. At that time I began to pass by and the baby girl waved at me while saying momma again. I waved back with a huge smile on my face. She looked like she would be around the same age of Evelyn, she even resembled Evelyn.

I'll take that as a sign......

A sweet message from my angel Evelyn.

And the rainbow I saw a few weeks ago in Northern California......

My First Christmas In Heaven

2010-01-10T16:33:00.001-08:00

During the holidays I received a letter from a sweet and thoughtful lady who shares the pain of child loss. The letter included this beautiful poem and I thought it worthy of sharing with you.

My First Christmas in Heaven

I see the countless Christmas trees around the world below,

With tiny lights like heaven's stars, reflecting on the snow.

The sight is so spectacular; please wipe away that tear,

For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear,

but the sound can't compare with the Christmas choir up here.

I have no words to tell you, the joy their voices bring,

For it is beyond description to hear the angels sing.

I know how much you miss me. I see the pain inside your heart,

but I am not so far away. We really aren't apart.

So be happy for me dear ones. You know I hold you dear

and be glad I'm spending Christmas with Jesus Christ this year.

I send you each a special gift from my heavenly home above.

I send you each a memory of my undying LOVE.

After all "LOVE" is the gift, more precious than pure gold.

It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do,

For I count the blessings and the Love he has for each of you.

So, have a Merry Christmas and wipe away that tear.

Remember, I'm spending Christmas with Jesus Christ this year.

Anonymous

The Holidays were very difficult. I found myself trying to ignore all of the typical holiday traditions of parties and gift giving. Simply, I had no desire. It felt a bit surreal as if I was watching a movie of another family together for the holidays. I really didn't feel like I was there, rather I was observing but not actively involved. I managed to get through it. I desperately wished I was experiencing Christmas through the eyes of a 9 month old little girl taking in all the joy and fascination of her first Christmas, instead of remembering a precious baby with only an empty stocking and photographs.

I do find comfort in knowing Evelyn is no longer in pain and that she enjoys all of the beauty and splendor of heaven. I miss her so much. It is a persistent ache, an emptiness that cannot be filled with anything other than FAITH. FAITH that I will be with her again and FAITH that she is with Jesus.

God is giving me the grace to navigate the overwhelming grief that I feel. I am sure there is a lesson in all of this and I am still learning. Through this journey I have felt a presence, a light, giving me strength, guiding me to the purpose of my life. How could I comfort a grieving parent if I had not experienced grief myself? How could I provide support to a sick child if I did not know so intimately what that child is experiencing? I don't have all the answers, however I feel like I am receiving signs, like he is gently guiding me in the right direction. Sometimes I wonder, "how is it possible for me to feel so much sadness, yet I still have hope and I feel like there is so much more to do?" If you would have asked me a year ago how I would react to losing a child, I would have said without hesitation that I would be in a spiraling, unending depression, that I would never have the strength to handle losing my father and my baby to cancer. So how is it so? God has always been present in my life but I did not embrace him fully. This journey that I am on is somehow bringing me closer to God. For this I am eternally grateful. I feel one step closer to Evelyn.

Faith is to believe what you do not see; the reward of this faith is to see what you believe. Saint Augustine

"Faith is not a storm cellar to which men and women can flee for refuge from the storms of life. It is, instead an inner force that gives them the strength to face those storms and their consequences with serenity of spirit." - Sam J. Ervin Jr

Our First Fundraiser

2009-12-29T10:30:00.000-08:00

Hurray! We successfully completed our first Evelyn Grace Foundation Fundraiser! The event was held on December 19, 2009 at the Bank of America on Main Street in Seal Beach, CA. I couldn't have pulled this together without the help of so many wonderful friends and my colleagues at GENEX. I am so blessed to have these incredibly giving and loving people in my life. There was so much love and generosity extended from those who contributed baked goods, helped me prepare, attended the event & donated........THANK YOU SO MUCH!!! Thank you to my friends Lynn, Mary, Liz, Heide, Brian, Tracy, Stuart, Stacy, Gerritt, Gary, Hadi, Savannah and my husband Brian for all your contributions to the event. My friends and team at GENEX literally filled two large tables with gorgeous and delicious treats! The bake sale was such a success that at the end of the day we had just a handful of items remaining. We raised $1,800 for the Evelyn Grace Foundation!

Update regarding the foundation- We have successfully filed our Articles of Incorporation for the Evelyn Grace Foundation, a California Non-profit Corporation. Also, the website development has been initiated and we hope to launch the site in February 2010. Good things to come in 2010 in the name of Evelyn Grace.

Thanks again to everyone who helped make this event a success!

Stay tuned for our next fundraiser and for updates regarding the UCLA Genome study. It is my goal for 2010 to help local children and families affected by childhood cancer and help UCLA raise the funds for the very important Genome project.

Best wishes to all for a blessed New year filled with love, peace, prosperity and joy.

Bobbie Doyle

This is Sylvia and her family. She works in the radiation department at UCLA and remembered Evelyn. What a wonderful gesture and tribute to Evelyn for her to stop by the event. Thank you Sylvia for visiting and for your generous donation!!!

Brian pausing for a photo while working hard to haul all the equipment and goodies to downtown Seal Beach.

Brian, Mary, Gerritt, Lynn & Heide! Thanks you for helping me!!!

My nephew- Hadi & niece- Savannah. Thanks for supporting your cousin!

Sharon and her adorable son AJ. AJ is a leukemia warrior and in long standing remission. Thank you for your support Sharon!

Our First Gift

2009-12-15T17:08:00.000-08:00

Today I met a little girl, she is four years old, beautiful and courageous. She has endured three years of chemotherapy. She was diagnosed at age 1. Can you imagine? Three years?! It happens.......there are a too many children that endure the excruciating journey of childhood cancer. I just happen to be familiar with leukemia. There is no quick fix to leukemia. When Evelyn was diagnosed we received the warning, "this is a marathon, you have to take care of yourself so you can be there for your child because this is a long---------------- road." I am thankful to God that the beautiful child I met today is getting closer to the end of that long road because she is defeating the leukemia. This is her FIRST Christmas without chemotherapy. Her first Christmas with beautiful long hair, free of pain and free of leukemia. She has experienced some emotional trauma from the chemotherapy, she doesn't talk to strangers or make eye contact. She is learning to cope and processing the experience in her own time. Her name is Stefania and she is a leukemia warrior.

I met Stefania and her mother today for the first time, through the UCLA Adopt-A-Family for the Holidays program. I am so grateful for this experience as it brought me a sense of purpose and new meaning for Christmas.

The Evelyn Grace Foundation provided Christmas gifts to this wonderful family who is so deserving of a Merry Christmas. This is our FIRST contribution, the first family we have helped and I walk away feeling like they helped me more. Today for the first time in a very long time I had a sense of joy. It brought happy tears to my eyes to see Stefania smile as she opened her gifts. I gave her an Evelyn button to wear and she looked at her mommy and said "a pretty baby." Her mom said she loves babies. I told Stefania that the gifts are from Evelyn. Her mom told her Evelyn is a baby and she had leukemia......at that moment Stefania glanced at me, as she seemed to process that the baby on her button had leukemia too. She connected with that emotion, she looked down at her button again. She looked me in the eyes, as if to say "I understand."

So today I am thankful to have met Stefania and her mother. I am happy to see a child that is in remission, she is surviving, she is so loved and she was my blessing today. I thank her for making me happy today. I thank God for bringing me some peace and joy today.

Evelyn Grace Foundation- Research for a Cure

2009-12-14T11:27:00.000-08:00

The past few months have been heartbreaking, painful, agonizing, and filled with moments of complete despair. Grief hurts, it physically and emotionally HURTS. Sometimes grief feels bottomless, a dark abyss that has no mercy. So I pray A LOT, I pray for some relief from the sadness and for guidance to make a difference in memory of Evelyn. I get up and face each new day with faith, hope and love- for Evelyn. I know I have to feel my way through it. I know I have to make some sense out of the senseless.

Which leads me to some promising and exciting news.......

I have started the Evelyn Grace Foundation. A non-profit 501(c)3, tax-exempt, charitable organization. Our 501(c)3 non-profit status is currently in progress. Also, the website development has been initiated and I hope to launch the site in February 2010.

Our Mission......

With Faith, Hope & Love our mission is to raise funds and awareness to support families affected by childhood cancer. Our efforts will focus on research for a cure, programs to help children living with cancer and to increase awareness regarding cord blood donation.

Evelyn was a baby yet she fought her disease with miraculous strength until her little body could no longer battle the aggressive leukemia. We will keep her beautiful and courageous spirit alive so that she can help other children and families affected by childhood cancer.

I hope to ultimately help to raise funds for an exciting research project in the development phase at UCLA Mattel Children's Hospital. The chief of the pediatric hematology/oncology division at UCLA has been in touch with me regarding a human genome project.

The Genome Project at UCLA’s Nelson Lab

and the Division of Pediatric Hematology/Oncology at

Mattel Children’s Hospital UCLA

It has been apparent for decades that cancer is generally the result of a spectrum of different DNA mutations that occur in different cell types. Indeed, one of the justifications for the Human Genome Project proposed in 1986 was that the decoding of the first human genome would permit us to understand all the many mutations that occur in cancers. Substantial progress in how sequencing is performed has been made. Through the development of methods that allow many millions of DNA fragments to be sequenced simultaneously (so called ‘next generation sequencing’), the ability to completely decode genomes is now a reality, and will reveal the true complexity of individual cancers.

The landscape of mutations within cancers remains largely unknown, and the cost of cancer sequencing has limited the research community to highly targeted efforts. However, we can now leverage powerful new sequencing technologies to develop complete catalogues and discover all mutations within an individual, which may be much more powerful for seeing coherent patterns of mutation when the entire genome is surveyed. A genome-wide view stands a much better chance of providing a comprehensive understanding of the biological processes disrupted in carcinogenesis, and of identifying novel genomic mutational targets to support more effective and specifically tailored treatments.

The Nelson Lab at UCLA has worked to establish the UCLA Center for Highthroughput Biology with a goal of rapidly sequencing and interpreting individual cancer genomes. This Center includes the capacity to generate the equivalent of 10 human genome sequences every week. With sophisticated imaging systems and high performance computing we can now determine the DNA sequence of genes in a process that takes under a month. By comparing an individual’s normal genome to the genome of their cancer, we can find all mutations that occur in the process of generating a specific cancer. Why and how each cancer developed holds critical clues as to how therapies should be applied.

Infant leukemia accounts for 3% of childhood leukemia and leukemia cutis occurs in approximately 25% of infants with congenital leukemia. Despite the rarity of the disease, the fact that this form of leukemia produces skin lesions indicates that the cells are different from other forms of leukemia and thus may respond to forms of chemotherapy not typically considered for treatment in newborns. We will sequence genes in two bone marrow samples from this little girl and also sequence her normal genomic DNA in order to completely characterize all mutations that occurred in the generation of the leukemia.

It will cost $60,000 to sequence each patient’s DNA, and the more that we can do, the greater the impact this study will have. Checks in support of this project should be made payable to “UC Regents” with a note that they are in support of the Nelson Genome Project.

For questions regarding donations please contact Jennifer Jung, Director of Development, Mattel Children's Hospital UCLA, (310) 267-1832 or jjung@support.ucla.edu.

Also, a postdoctoral fellow from Louisiana State University will be analyzing Evelyn's cells in culture. She will analyze the leukemia cells together with support cells known as stroma cells to study drug resistance. Since Evelyn's leukemia cells were very resistant to chemotherapy this may help explain more about her disease which could lead to further treatment advances as well. I am excited about this because infant leukemia is extremely rare in comparison to other forms of childhood cancer and leukemia in general. As a result, there is very little funding directed towards advancements in treatment protocols or for curing infant leukemia. Infant leukemia is very much a mystery and I want to change that with your help!!

If you would like to support the Evelyn Grace Foundation and the Genome Project at UCLA- You can donate by sending a check to:

C/O Evelyn Grace Foundation
PO Box 463

Seal Beach, CA 90740-0463

God makes a promise~ faith believes it, hope anticipates it. Patience quietly awaits it.

With Love,
Bobbie Doyle

I carry her heart

2009-11-23T16:52:00.000-08:00

i carry your heart with me
(i carry it in my heart)
i am never without it
(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)
i fear no fate
(for you are my fate, my sweet)
i want no world
(for beautiful you are my world, my true)  
and it's you are whatever a moon has always meant   and whatever a sun will always sing is you
here is the deepest secret nobody knows  
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows higher than soul can hope or mind can hide)
  and this is the wonder that's keeping the stars apart
i carry your heart
(i carry it in my heart)

ee cummings

Evelyn's Story

2009-10-25T13:21:00.000-07:00

I have decided to leave this blog for Evelyn. A place to visit her, remember her and love her. I will post from time to time if there is an event related to her foundation, a fundraiser or an anniversary. Upon completion of the Evelyn Grace Doyle Foundation there will be a link on this site to visit the new website.

For any visitors who may not be aware of Evelyn's journey, I have written this entry to summarize her incredible life and her courageous battle against congenital infantile leukemia.

Evelyn was born on March 19, 2009, after a completely healthy, uneventful pregnancy. I was scheduled for a caesarean section @ Torrance Memorial Medical Center in Torrance, CA on March 24, 2009; however I went into labor on March 19, 2009. Brian and I made our way to the hospital, excited, frightened, overwhelmed with joy that our life was about to change forever by welcoming this precious baby girl into the world. Evelyn was born via c-section at 7:29 pm. I recall all too vividly the anxiety I felt when they did not bring her to me immediately after she was delivered. I knew something was wrong. I felt like I couldn't breathe, maybe it was the fear or the anesthesia, perhaps both. I was strapped to a table and I was falling apart. It felt like my life crumbled in an instant. How could something be wrong with my baby? I tried to smile through it, tried to convince myself that she was okay, that everything was going to be okay. But I knew... call it maternal instinct, I don't know.

She was born with what appeared to be raised, violaceous lesions scattered over her entire body. They looked like bruises. She was quickly taken to the NICU for close monitoring and numerous diagnostic tests were completed over the next five days. My recovery room experience alone with no baby and those five days she was in NICU, awaiting test result after test result were agonizing, however in retrospect nothing compared to what we were about to face. Evelyn's WBC count was normal each time it was tested and upon discharge. The neonatologists were baffled. She was diagnosed with benign hemangiomas and we were discharged home on March 24th.

Evelyn appeared to be thriving. She was gaining weight and appeared to be a happy, healthy newborn with the exception of the mysterious lesions on her skin. We scheduled a dermatology consult at UCLA for April 10, 2009 regarding the skin lesions. The dermatologist requested a CBC after he completed her clinical evaluation in order to establish base line blood work. Several hours after our appointment we received the phone call that would forever change our lives. We were told that Evelyn had an "extremely elevated WBC count and there is concern of blood malignancy." The CBC revealed a WBC count of 266,000 (86% blasts). The skin lesions were in fact leukemia- known as leukemia cutis.

April 11, 2009-(22 days old) Evelyn was diagnosed with congenital infantile high risk ALL, Pre-B Cell, MLL rearrrangement 4:11 (translocation 11q23), monosomy 17, + CNS disease.

Evelyn was admitted to the UCLA Mattel Children's Medical Center PICU. She immediately underwent surgery to place a central line. A blood transfusion exchange was performed and two rounds of hemodialysis. She was started on chemotherapy protocol POG9407. The first night in the PICU was the longest night of our lives. We were blessed with a kind, compassionate, empathetic pediatric oncologist who was on call that weekend. Dr. Federman walked us through the drastic events that were taking place. He spent a great deal of time with us explaining the horror of her diagnosis, the extreme rare nature of her illness, and the fact that she was congenital (born with the leukemia), what she was up against, the chemotherapy she would face and the most painful of all, conversations regarding her ultimate prognosis.

During her first week in the PICU, there were many times I feared she would not make it. I prayed. I stayed with her every moment. I took pictures and video of her as close to her face as I could for fear I would not see her again, fearful I would not remember every detail of her beautiful little face. Evelyn made it out of the PICU and onto the pediatric oncology unit where we would spend approximately the next five months of her life.

Evelyn's amazing spirit began to show at such a young age. I think she was an old soul. She was extraordinarily alert for an infant. She seemed to know that she was fighting for her life and she so desperately wanted to stay with us. Evelyn would ultimately endure multiple rounds of chemotherapy. She achieved brief periods of remission. Those were the most glorious days. I had hope that she would be our miracle baby. I prayed that she would defy the odds, that God would keep her here with us.

Sadly, Evelyn relapsed on July 9, 2009, known as a primary induction failure. Once again we had the dreadful, helpless, devastating conversation in which we were told that Evelyn would likely not survive and that her odds had further decreased. There was only one hope and that would be reinduction chemotherapy. A more intensive chemotherapy regimen was started on July 9, 2009. The reinduction would need to get her to remission long enough for her counts to recover without reoccurrence of leukemia then take her straight to TBR and cord blood stem cell transplant. She in fact had a cord blood match which was awaiting her, frozen at UCLA Medical Center. Evelyn could not achieve remission long enough to make it to transplant. She would end up back in the PICU battling septicemia from enterobacter cloacae. She bounced back quickly after the appropriate IV antibiotics were administered. We returned to the pediatric oncology floor but soon after, Evelyn became febrile and her vital signs inconsistent. She rapidly deteriorated the second week of August 2009. The morning of August 11th, I was alone with Evelyn. When she woke I pulled her from the crib to rock her as I did every morning. I noticed the lesion on her head. It was the same location it had appeared when she relapsed the first time. I knew that was it. As her mother I knew she could not handle any more of the painful side effects, and the invasive procedures. She was giving up because the leukemia was too aggressive. Each time it returned faster and more aggressive. I fell apart, alone with her, I held her tight, I cried and I prayed. I later called in one of my favorite nurses who was like a mother to me and the selfless and kind Dr. Alan. We all knew……there were no words, we just hugged. A skin biopsy of that lesion confirmed a 2nd relapse on August 13, 2009.

I am re-living it again as I type this story and it hurts so deeply. Tears flood my eyes again. No parent should ever have to see their child suffer or worse hold them as they slip away. I held on to hope for 150 days. I prayed for a miracle but I handed her over to God somewhere in the course of that 150 days because it became too much for me to bear. It was too big. I knew I could not navigate the feelings of hurt & helplessness on my own. I relied on my faith more than I have at any other time in my life. I knew losing Evelyn could either destroy me, in which I could become an angry & resentful person or I could hand it over to God, hoping for guidance and renewed strength. My faith kept me from being swallowed by despair. It does not make it hurt any less though. We had Evelyn for 150 days. I loved her. I enjoyed every moment with her. I was her advocate, her nurse, her defender, her protector & her mother.

Congenital leukemia occurs at the rate of 1 per 5 million births! When I learned how rare her condition was, I thought WHY?! It was truly incomprehensible, it still is; however, I have come to realize that she had a very distinct purpose and that I have been blessed by her all too brief time in my life.

Evelyn ascended to heaven, no more pain, on August 16, 2009 @ 4:45 am. Brian and I held her non-stop, surrounded by family for 72 hours, not sleeping, refusing to leave the room, fearful she would depart if we left her side. I had her bed switched out to a regular size hospital bed so Brian and I could lay with her. I was in bed with her, holding her right hand and embracing her body as tightly as I could. I told her over and over it was okay to let go, but she waited....she waited for a calmness and silence to descend upon her room. I drifted off to sleep for a moment and it was that very moment that she slipped away. Quietly, beautifully, in her own special little way. Part of me went with her in that instant. I gave her a piece of my heart and it is no longer mine, she has it in her keeping. Heaven feels so far away and the future long before I see her again. I will live my life keeping her memory alive until I get to be with her again. I rejoice in that day.

Light the Night

2009-10-16T12:28:00.001-07:00

I want to thank so many people who helped raise money for the Leukemia & Lymphoma Society by participating or fundraising in the Light the Night Walks in the past three months. The Angel Stadium, Sacramento and Maryland "Team Evelyn" Walks raised approximately $17,000!!!

Thank you Allana Wiley Jones, Shannon Miller and Michelle Lindenmuth for taking the lead for each of the Light the Night Walks and to everyone who donated and/or participated in the walks!

Click here for article in OC Register. Click here for Seal Beach Daily article.

Middletown, Maryland

Light the Night Walk

Sacramento

Light the Night Walk

Holding on to Hope

2009-10-15T12:01:00.000-07:00

There is a book I am reading given to me by a kind and compassionate woman whom I have never met. She too, has lost a child.... Thank you Helga.

The book is called "Holding on to Hope."

The chapters include Loss, Tears, Worship, Gratitude, Blame, Suffering, Despair, Why, Eternity, Comforters, Mystery, Submission and Intimacy. Those chapters describe everything I have felt in the last two months.

Since Evelyn's celebration of life, a great deal has happened.....

Brian and I embarked on a "healing road trip." We packed up the car and headed north to Lake Tahoe. We had an idea of the places we wanted to see and the things we wanted to do, however we essentially winged it. It was a chance for us to breathe in the fresh air, see some of the most glorious places California has to offer, reflect on our time with Evelyn and "just be."

We traveled to Lake Tahoe, Sacramento (to visit the Yuras family~ they made us laugh and smile, finding our way back to the feeling of being silly and happy), Sonoma, Napa, Bodega Bay, Sausalito, Half Moon Bay, Monterey, Pebble Beach, Spanish Bay, Carmel, Big Sur, Cambria, Morro Bay, Santa Ynez and home. There is an obscene amount of photographs if you have any interest~ the link is: http://www.flickr.com/photos/bobbie1/sets/72157622322287279

Thank God for girlfriends!!!!!!

My college girlfriends flew me back east and we all spent a long weekend in Ocean City, Maryland at Mrs. Tammy Bowling's beach house! It was absolutely wonderful!! I felt like I was transported back in time, surrounded by friends who truly care about me and wanted to share time with me reminiscing about the old days, hearing stories of Evelyn, crying and laughing with me. I am utterly astounded by the outpouring of love and my friends who were there for me when I needed them most. Thank you my girls!!!!!! You all know who you are- east coast and west!!!

Lots of Love to Liz, Mary and Kristen who ran with me in the Long Beach Half Marathon in honor of Evelyn!

While I was back east Brian took a "Father/Son" trip with his dad to the wild wild west. They drove to Arizona and New Mexico. The highlight of their journey was a helicopter tour of the Grand Canyon and playing golf at the Tubac Resort (where Tin Cup was filmed). Anyone who knows Brian well, gets the fact that he is a movie buff and one of his favorite movies is Tin Cup.

Also, Brian flew to Florida to visit his brother, sister in law and two adorable nieces. I know that time with them meant a great deal to him and he especially loved being with Ava and Jordie.

The trips were a distraction for us at a time when we needed it most. I thought of Evelyn every single day and felt as if she was with me everywhere I went.

Some days I feel hopeless and the pain of losing Evelyn takes over. That is okay. I need to feel my way through it. I am asked on a regular basis, "how are you?" That's okay too. I would rather be asked than for it to be ignored. Ignoring my loss is far more painful. So my answer is generally, "I'm okay, I'm sad & I miss her." I lost someone I loved so much, so I am sad. I cry on a daily basis but it is often followed by laughter, particularly if I am around my friends who so wonderfully make me laugh!! Some friends and family cry with me and that means so much to me, their willingness to recognize it and "go there" with me. That is selfless and BRAVE!

One thing I know for certain is that I will never be the same. Evelyn has changed my life and the purpose of my life forever. I see things so much more clearly than I ever have before. She was truly a gift, an angel, there was a purpose to her short life. I will continue to keep her memory alive and I am in the process of starting her foundation so that she may help with funding towards infant and childhood leukemia research, as well as help other babies, children and families affected by this horrible disease.

In heaven there is no sorrow, no sickness, and no heartaches. There is gladness and light and joy forever. That is where my Evelyn is with my father. I take solace in knowing she has no more pain or suffering.

Big Sur~ Pfeiffer State Beach

Half Moon Bay

Carmel Mission

A candle lit for Evelyn

Thank you for the outpouring of Love. Your thoughtfulness, words, cards, gestures have meant so much to us.

In Honor and Memory of Evelyn

2009-08-27T13:15:00.000-07:00

Light the Night Walk- Angel Stadium
Money Raised for the Leukemia & Lymphoma Society- $13,076!
Thank You Michelle for being our Team Captain!

We will keep walking, running, cycling, swimming, praying and raising awareness for you Evelyn. That is my gift and my promise to you.

You will never be forgotten........

Celebration of Evelyn's Life

2009-08-18T19:25:00.000-07:00

The services will be held on Friday, August 21, 2009 at 11am. There will be a reception immediately following the Memorial Mass at American Martyrs in the Blessed Kateri Room.

American Martyrs Catholic Church
624 15th Street
Manhattan Beach, CA 90266

We welcome ALL who would like to join us for the celebration of Evelyn's life. We are forever grateful to the beautiful medical professionals at UCLA Medical Center who cared for Evelyn, especially those in the final hours and we welcome you to attend. We are so thankful to all of our friends and family for your unwavering love and support. Lastly, thank you to so many people who I probably have never met and may never meet who prayed for my precious Evelyn and we invite you as well.

The church is only able to accommodate a minimal number of flowers, therefore in lieu of flowers, please make donations to your choice:

L&L Society- Donation Link: https://www.leukemia-lymphoma.org/all_donate?item_id=8072

Team in Training Link: http://www.teamintraining.org/

With Love and Thanks,

Bobbie and Brian Doyle

I'm an Angel Now

2009-08-18T10:50:00.000-07:00

One night I cried to Jesus as I sat beneath a tree
I looked into the open sky and hoped he would answer me..
I'm lost dear Lord, I've traveled far, but still I seem to roam
Please light the way and lead me Lord, I need to get back home...

I told him of my burdens, and of the sadness in my heart
That from His gracious love, I'd never felt so far apart....
Why did you take my child Lord? I cannot understand!
No longer can I touch her face, or hold her tiny hand...

I'm angry Lord, I'm missing her, I'm drowning in my sorrow
Please help to heal my yesterday and face each new tomorrow...
It was then I heard her gentle voice and felt her presence near
How I wanted so to hold her as I cried another tear...

She said, "Mommy, I am an angel now, my spirit is free
I'm an angel now in Heaven, so please don't cry for me
I was chosen by our Lord above and now I'm in His care
When you need me, look inside your heart, I promise to be there

No one can ever take away our bond
For I'll always be your precious baby, as you will be my mother
So if you cannot find your way, or the road to home seems far
Just look up to the Heavens...and I'll be your guiding star

She said, "Mommy, I'm an angel now, my spirit is free
I'm an angel now in Heaven, no need to cry for me..."

by: Janice Grogen

Our Angel has Ascended to Heaven

2009-08-17T17:20:00.000-07:00

The beautiful and courageous Evelyn Grace Doyle lost her hard-fought battle with Leukemia and passed away Sunday morning at UCLA Medical Center. She went peacefully, in her sleep, in her mothers arms, surrounded by family at the hospital.

After numerous bombardments of chemo-therapy, transfusions, remissions, and subsequent relapses, there was nothing more that could be done for Evelyn. As her Mom, I knew she had enough. Her little body could not take anymore.

Evelyn was an angel here, and now she can spread her wings....she was meant to be here for the time she was. I look forward to the day I can be with her again………

More information to come regarding funeral arrangements….

The funeral will be held (tentatively) on Friday at 11am

American Martyrs Catholic Church
624 15th St
Manhattan Beach, CA 90266-4898
(310) 545-5651

Champ

2009-08-01T21:20:00.000-07:00

(Pause playlist to hear video sound..)

Cracks

2009-07-27T14:35:00.000-07:00

I was driving into the UCLA medical center parking garage this morning and I thought to myself............is this really possible? Am I still here at the hospital with my baby? Was my precious newborn baby really born with leukemia?! Is this some kind of sick joke?!! A baby can be born with leukemia?!!! I still, to this day (mostly when I am angry) have to say it out loud to make it real.

When you become a cancer patient or in my case, a cancer parent; you receive a packet from the American Cancer Society, a packet filled with helpful information welcoming you to the world you never wanted to be part of.....

One particular paper caught my eye......

it reads.....

Cancer Cannot

cripple love
shatter hope
corrode faith
destroy peace
kill friendship
suppress memories
silence courage
steal eternal life
conquer the spirit

I would agree with most of those but certainly not all. If there are cracks...........the cracks get larger...........they become earthquake fault lines.........you know that at any moment the earthquake may erupt and it will all come crumbling down.

I am happy to say that my sweet Evelyn is much improved. On Thursday, July 23rd we returned to the 3rd floor, leaving the ICU behind, hopefully forever! We were even fortunate enough to get our same room back-room 3525! Yeah!

Evelyn's blood infection is resolving and she has had several negative blood cultures so thankfully the antibiotics were effective. Evelyn was having long episodes of bradycardia which has resolved on its own as well. She had a normal EEG and EKG. Also, on Friday July 24th Dr. M was concerned regarding potential leukemia in the brain stem due to the persistent bradycardia; however (Thank GOD) the MRI looked good.

Evelyn is still receiving frequent platelet transfusions. She has resumed eating, not a lot but certainly a little is a step in the right direction. We have 9 more days left of her re-induction chemo phase POG9407. Then we wait a few days for her counts to recover. When her counts are adequate she will have a bone marrow biopsy to determine if she is in remission.

So, I try to keep the FAITH and TRUST. Faith in God is the easy part....TRUSTING God with the rest, is the hard part. I tell my self over and over....trust, trust, trust in God.

Courage

2009-07-22T13:13:00.000-07:00

Evelyn’s condition began to deteriorate on Sunday, July 19th. She was becoming increasingly lethargic; she was not alert, having spasms, appeared very uncomfortable, fussy/agitated. Her respirations became increasingly labored, her blood pressure dropped (50/20) and her heart rate was increasing (200-220) and staying elevated. I was very concerned about the marked change in her and alerted the medical staff. Fortunately, her nurse Sufia communicated my concerns and moved very quickly implementing new orders and initiating diagnostic procedures.

Numerous tests were immediately performed and in order to stabilize her blood pressure Evelyn needed to be transferred to the Pediatric Intensive Care Unit.

Needless to say, I was devastated for us to return to the ICU…I probably had one of the worst "melt downs" to date. I just felt like I couldn't take it anymore. Now three days later, I am feeling a little better. I keep praying for strength even when I feel like no one is listening….then I feel a little better, bit by bit so I know God heard me.

Evelyn received a bolus of IV fluids and was started on a dopamine drip to stabilize her hypotension (low B/P) and tachycardia (high heart rate). Evelyn was found to have a blood infection which was the reason for her alarming symptoms. The cytology report revealed “Enterobacter cloacae bacteremia." Evelyn was started on IV antibiotics-gentamycin and ceftriaxone to treat the current infection.

Thankfully, Evelyn is doing much better today. Yesterday I felt as though I was not being heard regarding the fact that Evelyn was still in pain and her pain medication was not effective. Fortunately, I was able to speak directly with the ICU attending during rounds yesterday and voiced my concerns. Evelyn was discontinued from the methadone and started on PCA dilaudid. Today she appears much more comfortable, is no longer showing signs of agitation, arching her back or rolling her eyes backward. That was my mission to make her comfortable again. She is on day 14 of re-induction chemotherapy so she is undoubtedly feeling the painful effects of her chemo regimen. That is why pain management is so important to me as there is no reason for her to be in pain with proper medication and management of her symptoms.

Evelyn is dropping platelets fast and frequent as a result of her infection and chemotherapy. If anyone is interested in donating to the UCLA Blood and Platelet center now is the time. Your platelets will go directly to Evelyn! She will continue to need frequent blood and platelet transfusions for the next few months. THANK YOU SO MUCH to everyone that has already donated blood and or platelets.

UCLA Blood and Platelet Center: http://gotblood.ucla.edu/

310-825-0888 ext. 2

We hope to be back on the hem/onc floor in the next day or two, when a bed becomes available. There are never enough beds………..how tragic and sad that all the beds on a pediatric cancer floor are always full. I hope one day all the beds on that floor are EMPTY. Someday we have to find a cure for cancer, especially infant and childhood cancer!

So for today…..

I plan for the future but live in the now.
I pray for the courage to handle anything that comes my way today.
I trust my life (this situation) is unfolding in the perfect, right way.

Smiles and Giggles

2009-07-17T13:27:00.000-07:00

A video of Evelyn taken about a week ago when she was still in great spirits and feeling okay... These videos make me happy. I look forward to getting her back to this smiling, giggling, happy baby. (Pause the music playlist in order to hear the sound on the video)

While at home-Rocking Out to Bob Marley............

In The Hands Of The Lord

2009-07-12T16:24:00.001-07:00

I am having trouble finding the words or inspiration to update this blog…

I will try my best…….

Today I went to church hoping to find some strength and guidance. The priest talked about how we must place things beyond our control “In the hands of the Lord.” Sounds easy enough………….but is it really? I am trying……..Does that mean that you have given up or just realized that it is too BIG and completely out of your control? The leukemia that has Evelyn in its grasp is so BIG and so cruel that I know I cannot battle it alone. I have to place her in the hands of the Lord and have faith that he will lead us to a better place.

The following passage was taken from another mother whose child is fighting leukemia (and recovering well post 2nd bone marrow transplant). This mother writes beautifully in describing the loneliness and isolation that happens when you have child with leukemia. She describes how we lose time, maybe a year or more out of life that will never be regained, there are many losses along the way but we cannot lose faith and hope that someday the gains outweigh the losses…….or it will overwhelm you….. lead you to complete despair.

So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal. ~ 2 Cor. 16 – 18

(thank you Dana)

Evelyn has relapsed………

When she was home she had a twinkle in her eyes, an enormous smile, she filled the room with joy, just simply her presence. She was wide eyed; she stared into my eyes, inquisitive, always checking out her surroundings. I think she is an old soul………..like she knows a lot about this world already but she is only 3 ½ months old.

The most devastating part of her relapse is that the chemotherapy had to be resumed immediately. I watched her as the twinkle went from her eyes; she even stopped looking at me. She cries but looks outward, instead of looking in my eyes. She doesn’t smile anymore. She needs pain medication. So instead of the joyful moments I briefly had, I become a mother advocating for her baby and I become a nurse. I quickly try to figure out what will bring her comfort. Which assortment of medications, talk with the nurses about timing the meds so that she is comfortable most of the time instead of having peaks and valleys of relief and pain. I begin to wonder how she will handle this next round of chemotherapy? How much harm is it doing to her little body? Is she strong enough to handle it? Will she respond as quickly as she did the first time? Can she achieve remission long enough to make it to transplant? I don’t have the answers to any of these questions. So I take it day by day, minute by minute and leave it……….

In the hands of the lord………..

I want to THANK so many people for arranging and taking part in the blood drive for Evelyn. The blood drive was sponsored by my employer GENEX Services, Inc along with UCLA Medical Center-Mattel Children’s Hospital. It took place at my place of business in Orange, CA on July 7, 2009.

The blood drive was an enormous success with 51 donations. Evelyn’s blood type matches will go directly to her, all other blood types will go to the UCLA blood bank to help another child at Mattel Children’s Hospital.

I want to especially THANK members of my GENEX team- Pamela Ritchhart, Donna Estudillo, Karen Wilson, Noel Reyes & Jean Caldwell.

Also, Dr. Michael Hamby, Bonnie (building owner for allowing us to use an open suite), Cathleen Davidson and the UCLA blood and platelet center team.

I want to thank all of those within my GENEX family that donated as well as friends (thank you GEE and LIZ!), acquaintances and strangers that gave blood for Evelyn.

Lastly, I want to thank Karen Mayo, the photographer who took the most beautiful (complimentary) photographs of Evelyn during our brief time at home.

http://www.karenmayophotography.com/

THANK YOU to all the wonderful nurses that continue to take care of baby Evelyn....not only as medical professionals but kind & compassionate people who really care...just to name a few.....Jessica, Jennifer, Jenny, Miranda, Melody, Fariba, Chelsea, Stephanie, Mina, Dennis, Michelle, Bridget, Anna, Annette...and the list goes on..

It is the love of my family, friends and colleagues that sustains me……..those who truly care and have the capacity to give of themselves, rise to the surface and become the light in my life.

Rolling with the Punches

2009-06-30T16:57:00.000-07:00

I can't even describe how wonderful it was to have had Evelyn home for approximately two weeks. We had such a wonderful time with her, cherishing every minute.

I am in very bad spirits tonight. I am completely exhausted from difficulties we have had with the hospital readmission process and other situations that occurred last week related to some out patient interventions Evelyn needed. Frankly I am too tired to even describe what happened. I spent the night in the emergency room with Evelyn last night in order to ensure she had her procedure this morning and to secure a bed for her on the pediatric oncology unit today.

While Evelyn was home we began to see a lesion growing on her head. Late last week a skin biopsy was done which verified what we feared most. Today I learned she has relapsed in the CNS and bone marrow as well.

This morning Evelyn had a TIT lumbar puncture. Earlier this evening I was advised that the leukemia blast cells are in her CSF (cerebral spinal fluid) again. Basically what this means is we have to start all over with approximately 4 more weeks of intense chemotherapy. Her odds of survival have decreased even further because this setback is considered an "induction failure." After more chemo we move on with radiation and eventually transplant. Based on the information I received today, her transplant will probably be delayed about a 1 1/2 months.

We are still holding out for a miracle. I am praying that God will help me find the strength to deal with the fear, anxiety and fatigue that I feel. I know it takes courage to believe that this will all work out and that it is in the hands of God and I have to trust that.

Evelyn is growing, her personality is beginning to shine through, she is magical, such a sweetie. I am so glad she doesn't understand and will not remember any of this horrible experience.

As for me, I feel beaten down, exhausted, sad.........some days I just don't know how I will go on....but I do and I will.

Home Sweet Home

2009-06-27T20:36:00.000-07:00

Evelyn was discharged from the UCLA Medical Center on Thursday afternoon at approximately 3pm. (In the midst of the Michael Jackson chaos!!) Needless to say it was a long drive home with the insane traffic around the hospital.

We are over the moon having Evelyn home. I only wish we didn't have to go back to the hospital. The plan is to return to UCLA to be readmitted on July 6th. Evelyn is scheduled to start TBR (total body radiation) on July 7th. Tentatively she is scheduled for the cord blood stem cell transplant on July 16th (my birthday...........how ironic! I think it is a sign from GOD!)

More details regarding Evelyn soon. For now I want to enjoy every minute of having her home with us.

A few photos from today.......

Enjoying my bed and Teddy Bear

Getting ready for a walk around the neighborhood with Yogi

She Did It Again!!

2009-06-23T19:23:00.000-07:00

Evelyn's bone marrow biopsy results are in......and she is still in remission. They did not find leukemia cells in her bone marrow or spinal fluid!!!! I am so thankful for this fantastic news! Now we proceed with the radiation and transplant phase. Everyday we hold on to hope that she will defy the odds, everyday she amazes us with her strength. Day by day......she is doing it. Please keep praying.

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ~Lance Armstrong

Happy Father's Day!

2009-06-20T12:46:00.000-07:00

Dear Daddy,

I know I can't talk yet but as soon as I can I will tell you that you are the best Dad in the whole world!!

Love, Evelyn

In Memory of My Dad, Donald Bryan Tomblin. I lost my Father to Cancer 10 years ago. I miss him every single day. I know he is watching over me and giving me strength.

Happy Father's Day

Happy 3 Month Birthday Evelyn!!!

2009-06-19T19:03:00.001-07:00

Today, three months ago, the most wonderful and beautiful blessing came into our life. I am endlessly amazed by how much love I feel for this little person. I fell in love instantly and life will never be the same. "Happy 3 Month Day" to my sweet little Evelyn!

This past Thursday Evelyn had an audiology test to examine her hearing. The results indicated that she has suffered some hearing loss in high frequency sounds only. The good news is that her hearing in both ears is very good for low and mid frequency which is needed for developing speech and language. They will continue to monitor her hearing and since the results they have discontinued her gentamicin antibiotic which can attribute to hearing loss.

Evelyn's WBC count rebounded rather quickly this time, thanks to a little help from GCSF. Her WBC count is now well above the normal limit so the daily injection of GCSF has been discontinued. She continues to require transfusions, mainly platelets.

The methadone taper dose and frequency has been reduced further. She should be off of the methadone by Sunday........hopefully. She is still not interested in her bottle or her "binky." I will keep trying everyday. Occupational therapy is going to visit to assist with reintroducing her bottle and pacifier. Hopefully they can help.

Monday, Evelyn will have another bone marrow biopsy to confirm that she is still in remission. PLEASE keep her in your prayers. Part of the eligibility for a BMT is proof of remission, therefore this is crucial in order to continue with the conditioning steps and ultimately the BMT. Tentatively the BMT will happen in approximately one month.

Wednesday, we will meet with the radiation oncologist to discuss TBI (Total Body Irradiation). Unfortunately, this is recommended as part of the conditioning regimen prior to BMT . Evelyn is considered high risk because upon presenting with leukemia, she had leukemia blasts cells in her central nervous system. Although there are possible long term side effects, TBR and radiation to the brain provides the best chance to be cured and to avoid relapse.

I can't even begin to describe the grief and anxiety I feel about this form of medical intervention and how it may affect Evelyn later in life. Brian and I have to stay focused on giving her every chance at survival, then we will deal with whatever the future holds, as long as she is still here with us.

Dr. C discussed inserting a nasogastric tube tomorrow. With an NG tube the IV TPN can be discontinued and we can go home with an NG tube for nutrition instead. NG tube feedings are also good for her gut. It is very important to keep her gut active, to decrease risk of GI infections and to keep the normal flora of the gut healthy. We are hoping to be able to go home on Thursday just for a few days. Then we will return to the hospital for the BMT preparation which involves "conditioning chemotherapy" which is high dose chemo in order to destroy her bone marrow prior to transplant. The purpose of the high dose chemo and radiation is to kill most or all of the remaining cancer cells in the body and to make room in the bones for the new stems cells. Once again, Evelyn will be very immune suppressed prior to transplant and after transplant until her new marrow begins working and her counts eventually recover. Engraftment is the process when the new marrow begins producing healthy white cells, red cells and platelets. This typically occurs two to six weeks after transplant. Complete recovery of immune function can take one to two years.

Today I went to the UCLA Blood and Platelet Center to donate platelets for Evelyn, I am sorry to say that I failed. My iron was too low so they rejected me this time. The minimum iron level is 12.5. As I was walking back to the hospital I noticed that the movie "Hangover" was about to start at a local theater in Westwood. So instead of giving platelets for two hours I watched an absolutely mindless, hilarious movie. I laughed from start to finish!

Our sweet, precious baby is asleep now. She had an uneventful day. We played with some developmental toys, rocked in the chair, had some swing time and she had a few naps. I hope she has a good night filled with sweet dreams.

Jessica...a super special Nurse. She takes great care of Evelyn!

How I face each day....................

My cozy hospital bedroom.............. It's actually not too bad. I am close to Eve so that is all that matters.

My room with a view of Westwood Blvd................

The daily drips that are saving Evelyn's life...............

2009-06-17T10:36:00.000-07:00

Evelyn News

2009-06-16T14:24:00.000-07:00

Contemplative....

Cousin Hadi visit

Hello All!

I finally had an opportunity to step away to a local Starbucks so I could take some uninterrupted time to update the blog. Evelyn is doing really great. She finished the most recent round of chemotherapy on Tuesday, June 9th. Her WBC count, hemoglobin and hematocrit and platelets continue to drop which makes her immune suppressed for an anticipated week or two. She will slowly begin to recover her counts and then we have been told we will be able to go home for a short time prior to the transplant. HIP HIP HOORAY!!!! I can't even begin to explain how happy I will be to walk out of that hospital with her even if only for a short time.

Our primary goal at this time is to keep her free from infection. Any infection can be life threatening to her while her counts are so low.

On Monday June 8th she had a new central line placed. The previous permacath line became loose and actually broke free on Friday night June 5th. That was a frightening episode and a bit chaotic but thankfully we had an exceptional nurse that day (Jessica!) and she handled the emergency very well. The new CVC is the line we will go home with and that she will have for the long term. The Hickman Central Venous Catheter was placed in her Left Subclavian. So far she has tolerated the procedure well and is infection free.

On Wednesday June 9th, no more chemo for a while!! Evelyn does not have an appetite and is still not taking the bottle. Amazingly she is gaining weight due to the nutrition she receives by way of TPN. She is actually getting quite plump! The TPN makes her cheeks extra plump. I love her cute baby chunky legs!!

Last week she began to experience persistent low blood pressure therefore her PCA dilaudid was abruptly discontinued. Unfortunately, she developed narcotic withdrawal symptoms so she was started on a methadone taper two days later. Yes, I have a baby druggie! Fortunately, her blood pressure has recovered and is stable now.

I learned this morning that a cord blood match has been identified; however I do not have the specifics yet. All pre-transplant testing has been initiated which includes EKG, Hearing Test, numerous Blood Tests, etc.. I was told that the pre-BMT testing has to be done one month prior to the actual transplant therefore we are moving forward and the transplant is officially in sight. More details regarding the cord blood donor later.

I have begun donating whole blood and platelets to Evelyn via the UCLA Blood and Platelet Center. My blood and platelets go directly to Evelyn and yours can too!! If you live nearby and would like to donate your blood and/or platelets to Evelyn please contact the UCLA Blood and Platelet Center- information below. Providing your platelets does not require a specific blood type- anyone can give platelets! Whole blood will involve a blood type match. The process of donating platelets requires about two hours. It is not painful, feels a little "weird" but once you get used to it, it is kind of relaxing. You lie down in a very comfortable chair, they wrap you up in warm blankets, you select a movie of your choice and you have your own personal TV and head set. Not a bad deal. Then afterwards they have DELICIOUS cookies waiting for you! I think they are Diddy Riese cookies and for anyone familiar with the local Diddy Riese, you KNOW they are YUMMY! Even better yet, how amazing and wonderful to know a part of you is going directly to Evelyn!

UCLA Blood and Platelet Center: http://gotblood.ucla.edu/

310-825-0888 ext. 2

Schedule Appt: http://gotblood.ucla.edu/body.cfm?id=50&oTopID=50

Mobile Blood Drive: http://gotblood.ucla.edu/body.cfm?id=26&oTopID=26

As many of you are aware, the leukemia battle is a long and agonizing journey with many highs and lows. When Evelyn makes it to one year post remission that is a major milestone, then with each passing year she is closer to recovery. Five years is the next major milestone, however there is still a risk for relapse. Evelyn will require ongoing and long term care by a multidisciplinary team of physicians. I look forward to the day she graduates to the UCLA VITA Survivorship clinic. Links to surivorship clinic below:

http://www.cancer.ucla.edu/Index.aspx?page=590

http://www.cancer.ucla.edu/Index.aspx?page=222

Brian's boss and employer- Medtronic made an incredibly kind gesture by setting up a fund for Evelyn. Information provided below:

In Support of Evelyn Grace Doyle Donation Fund:

Donation by Check:

C/O Evelyn Grace Doyle Donation Fund
Attn: Maria Gorman
27702 Crown Valley Parkway, D-1
Ladera Ranch, CA 92694

Additional Information:

Contact: Maria Gorman
Direct: 949-364-5518
Maria.Gorman@wellsfargo.com

I want to once again express my sincere and unrelenting appreciation for your support, prayers and thoughtfulness. As an example, Evelyn has a "care partner" @ the hospital- his name is Jesus (pronounced hay-zeus). He recently participated in a "team in training" 100 mile cycle event in Lake Tahoe, CA. When he returned he came to visit Evelyn and said "he rode for Evelyn and every time he climbed a hill, he thought of her." He gave her his medal from the event. Simply amazing -how lovely and thoughtful!

I recently spoke with a professional colleague and friend that shared a very poignant personal story with me. As a result I found renewed strength, thanks to his words. No more do I view this experience as "Why Me?" Instead, "Why not me?" Who else is going to care for her and watch out for her the way I can?! She has so much LOVE from Brian and I, from our families and friends. She is my Champion, my little warrior.

Today I received this link from a mother I met online through the Leukemia and Lymphoma Society. This is a wonderful story of a young woman (who actually lives locally) she was diagnosed with leukemia at six weeks old, she is now graduating from highschool. There are so few documented stories of long term survivorship due to the rare nature of infantile leukemia so this story is absolutely wonderful.

Link to News Story with Video: http://cbs2.com/local/Stephanie.Rudat.be.2.1046712.html

2009-06-14T14:39:00.000-07:00

Eve Video June 12, 2009

Evelyn News- June 7, 2009

2009-06-07T18:34:00.000-07:00

Evelyn has been progressing steadily with her treatment plan. She has tolerated the current chemotherapy fairly well with side effects limited to loss of appetite, nausea/vomiting and low blood counts. She has finished the lumbar puncture chemotherapy (thank goodness). It was very difficult to see her in pain after those procedures. Fortunately, she did have continuous pain medication on board which really helped this last time.

Currently Evelyn is on a five day course of chemotherapy- Cytoxan and Etoposide. As of today she has completed three days. Following this course of chemotherapy she will become immune suppressed again for several weeks. Our biggest worry is an infection of some kind. After approximately three weeks her counts (WBC's, RBC,'s H&H and platelets) will begin to increase again. She will receive GCSF injections again to help that process along. Then she will have another bone marrow biopsy to ensure she is still in remission and there are no blast cells in her marrow. At that time, she will either have additional chemotherapy or she will proceed to the bone marrow transplant. This will depend on the availability and selection of the umbilical cord.

Today I am feeling sad, more so than most days. When I come home for a break it is hard for me. I walk Yogi and Evelyn should be with us. I walk by her room and she should be there. I see little children in the neighborhood and I wonder again..........."why?" My neighbor asked me today "how is the baby?" Not knowing of course of Evelyn's diagnosis. Having to rehash the story proves to be far too difficult sometimes.

On a happier note, Auntie Jenny came to visit last weekend. Evelyn had some quality rocking time with Jenny and lots of hugs and kisses. Also, Evelyn had her first red wagon ride down the hallway. Fun Fun. She looked all around, appearing rather puzzled at the movement but enjoyed her ride.

Video of Evelyn

2009-05-28T19:45:00.000-07:00

Uncle Matt
Grandpa Doyle

Sweet baby Evelyn is doing okay this week. On Friday, May 22nd she received a new round of chemotherapy- TIT (triple intrathecal) and HDMTX (high dose methotrexate). By Sunday she was in a great deal of pain. She was so agitated, uncomfortable and inconsolable. She stopped eating. She developed an infection in the soft tissue of the right leg. Needless to say it was an excruciating 48 hours for us. I wanted to make her comfortable and it just wasn't happening. By Wednesday the pain medication was adjusted to a therapeutic level and finally she began resting without pain. The good news is she cleared the HDMTX quickly and as of today appears to be feeling much better. This morning Evelyn had an MRI to determine if the right leg had developed osteomyelitis (bone infection). Fortunately, as I type the message the physician just came to tell us that the bone is not infected. HURRAY!!!

Today the plan is to decrease her dilaudid (pain medication) so hopefully she will be more awake so she will start eating. Also, she is going to receive her next round of chemotherapy later this evening. First, she will be getting more platelets. (Don't forget to donate blood and or platelets....Evelyn has received countless transfusions and platelets. It is a wonderful gift to give to her!)

I know we have another difficult week ahead of us, however we are one step closer to reaching the bone marrow transplant. Apparently several cords have been identified and are being tested to determine which is the best match. Evelyn has five more rounds of chemotherapy before she reaches the bone marrow transplant phase. The chemotherapy will change to VP-16 and CTX. More details about those drugs later.. Hopefully she will tolerate the chemotherapy fairly well and can stay on schedule. The umbilical cord stem cell transplant is an additional one to three month hospital stay, depending on how she tolerates the chemotherapy prior to BMT and after as well as the potential complication of GVHD (graft-versus host disease). In GVHD, the bone marrow or stem cells provided by the donor (graft) attack the tissues an organs of the child receiving the transplant (host). GVHD can range from mild to life threatening.

Grandpa Doyle from Boston and Uncle Matt from Florida are visiting this weekend. Grandma Doyle has been staying with us since the diagnosis. We appreciate her help holding down the house! She is spoiling Yogi with lots of attention, walks and new toys! Also, my "fantabulous" girlriend Jenny is flying in from Idaho to visit with us this weekend. :-) She will be here in about an hour........YAY!!!

Please keep praying for Evelyn!!

Love,

Bobbie, Brian and Evelyn

2009-05-21T15:05:00.001-07:00

EVELYN IS IN REMISSION!!!!!!!!!!!!!!!!!!!!!!

Her bone marrow biopsy showed no lymphoblast cells!!! We are moving forward with the next round of chemotherapy. This is the BEST NEWS EVER!!

Perhaps all of the positive energy and prayers are working! THANK YOU, THANK YOU, THANK YOU for keeping us in your thoughts and prayers!

Evelyn Update- May 20, 2009

2009-05-20T16:55:00.000-07:00

Sunday was a happy day. Evelyn was temporarily disconnected from all of her IV's. For the first time I could walk around the room with her! It was wonderful! There is a silly video below from that very joyous occasion.

Monday brought bad news and the remainder of the week has been difficult. We received some very disturbing and disappointing news regarding Evelyn's treatment and prognosis on Wednesday. Fortunately, the following day we received word that perhaps the preliminary information did not tell the full story, so there may be a change from what was originally reported.

On Monday a peripheral blood smear was completed. Under the microscope analysis it appeared that Evelyn's leukemia had returned and there were blast cells in her peripheral blood- "Primary Induction Failure." However, on Tuesday the blood smear looked entirely different. It showed "atypical cells" but did not show the blast cells. In order for Evelyn's team of physicians to determine if the leukemia has in fact returned, a bone marrow aspiration needed to be performed. The sample will definitively determine if the leukemia cells are being produced in her bone marrow at this time. Today, the bone marrow aspiration was performed under general anesthesia. Evelyn is sleeping off the anesthesia as I type this message.

Early in the week Evelyn developed a skin lesion on her right lower leg, it is tender and inflamed with areas of induration. During today's procedure a skin biopsy was taken from that area as well to determine if it is an infection, leukemia cells or some other issue. Lastly, a catheter was inserted to collect urine for a renal function study as well as protection for her perineal area against break down due to the next round of chemotherapy which will likely start on Friday.

Regardless of the findings from the aspiration today we are going to proceed with another round of chemotherapy to hopefully get Evelyn to remission, then proceed directly to bone marrow transplant. The findings from the bone marrow biopsy will provide Evelyn's medical team with the necessary information to determine what chemo treatment plan to proceed with at this time. Their plan is to "attack it very aggressively." We have a great deal of confidence in Evelyn's team of physicians and two in particular that are incredible in many ways. I appreciate the knowledge base they hold and the science of it all but I really admire their ability to communicate to us effectively, their level of kindness, empathy and devotion. It makes a difference during such an agonizing journey.

Evelyn has a horribly difficult journey in front of her. We have no way of knowing how the chemotherapy drugs will affect her, whether she sails through with just some general side effects that are manageable or the side effects could be much worse. We will continue to pray she reaches remission and manages to do so with merely mild, unpleasant side effects versus life threatening or chronic.

She is so alert for an infant, many of the medical staff comment about this. It is almost as if she knows she is up against a monster and she is ready to do battle. Sometimes she gets sad but more often she is peacefully rocking in my arms. If she is receiving medical treatment or some type of procedure that is generally when her fists get going. I think she is going to be a rebel like her mom! :-)

Thursday we will find out preliminary results from the bone marrow and skin biopsy. All we can do is think positive, try to stay strong and pray the results do not show leukemia cells. If they do, we will still remain positive and move forward. No one truly knows how this will end, except God. I don't proclaim myself to be a hyper-religious person, but I have always prayed and believed there is a GOD of some sort. Facing the devastating news of our child having leukemia, I began to reach for answers wherever and whomever they may come from. You have to have FAITH in something.

Video-"I'm Free!!"

Video-Cheeky Monkey I

Video-Cheeky Monkey II

A Prayer for Evelyn

2009-05-12T19:39:00.000-07:00

Evelyn is having a fantastic week. We are still waiting on her counts to increase so she can proceed with chemotherapy. For now, we are enjoying every moment that she is happy and feeling good. I am anxious for her to reach the needed WBC count and Neutrophil count, not only so we can continue to move her forward in this battle but also so I can finally take her for a stroll down the hall or maybe even outside so she can feel the sun on her face. I look forward to it!

"Cheeky Monkey" as Daddy likes to call me

I love my cousin and Auntie!

Cousin Sabrina visiting from Boston

My Swing is so relaxing

Ahh, sleepy time

Video with cousin Sabrina

Prayer for Evelyn

Dear God,

There are no words for the depth of my love for this child.

I pray for her care and her protection.

Please dear God, send Your angels to bless and surround her always.

May she be protected from the darkness of this time.

May she always see you at the center of her life.

May her heart grow strong. May she overcome this illness. May she grow to be a loving and kind woman.

Dear God, make me the parent you want me to be.

Show me how to love most patiently, to be there for her most fully.

To understand profoundly who she is and what she needs.

May this family be a blessing unto her now and forever.

May she grow to learn the values and principles of love and righteousness.

May she learn from me kindness.

May she learn from me strength.

May she learn from me the lessons of power.

That she has it and must use it now to overcome this illness.

Dear God, shall you be gladdened,

and thus shall she be free,

To live most fully and love most deeply.

That is my wish.

That is my prayer for her and for me forever.

Amen

Where Does the Time Go?

2009-05-11T22:07:00.000-07:00

I always have the best intentions regarding the things I want to accomplish each day while here at the hospital with Evelyn. Instead, I live in this hospital room caring for Evelyn, watching over her, interacting with the constant parade of medical staff and then I look at the clock and realize I haven't left the room for 5, 6, 7, 8 hrs! So much for finding some sort of balance in order to stay strong and optimistic for Evelyn! I will try again tomorrow. One of these days I will figure it out.

At this moment, I am feeling happy to be here alone with Evelyn because I have had so little one on one bonding time with her. At the same time, I feel agitated, betrayed and sorry for myself.

In the last trimester of my pregnancy I was so looking forward to this new and marvelous time in my life. I waited a long time to become a mother. I felt completely prepared and was excited for this new phase in my life. I was looking forward to that mother-baby bonding time that I heard so much about from my friends that are moms. I have devoted myself to my career for many years and now I was actually going to be able to take a "time out" and focus on one little thing.........a sweet baby. I imagined the time spent rocking my baby in her cozy new glider chair in her beautiful nursery, taking her for walks around the neighborhood with Yogi in tow, going for jogs to the beach in her new stroller. All the fun we were going to have! Instead, I have had to share her from the start, taken away from me and rushed off to the NICU shortly after her birth. Now I share her with doctors, residents, fellows, interns, nurses, care partners and family. Of course I appreciate all that these individuals are doing to help Evelyn, me and Brian; however it does not negate the fact that I have lost those early precious and tender moments forever. I never had the opportunity to bond with her during the day, alone, just the two of us, our time together. I can only reflect on what it might have been like, the maternity leave that I was going to embrace and cherish every moment! So I am feeling sorry for myself right now...........is that wrong.... I wonder? I hate the feeling of self pity. As I sit here in this hospital room where we have been for almost the entirety of Evelyn's short life, it makes me so ANGRY! I wish there was a punching bag in this room with the name leukemia written on it! Forget the depressing support groups where you leave feeling worse than you did when you arrived. I need a kick boxing class, perhaps then, I could get a little more centered!

Evelyn news:

Evelyn gained more weight. She is now 9.1 pounds! Yippee

Unfortunately we had some set backs in terms of her WBC count, it dropped again. This is likely a result of the TIT chemo she received last Friday. I am hoping that her counts increase with tomorrows CBC results. Also, as of today she is + for a C.DIFF infection. Essentially this a gastrointestinal illness ( a spore forming bacterium) that is often caused by antibiotics affecting the flora of the colon and her weakened immunity. It is treated with a new antibiotic by mouth called Flagyl.

I am hoping she will reach her goal for the week so we can proceed with the induction intensification chemo/high dose methotrexate. I am optimistic she will get there this week! She looks great, she is sleeping and eating at regular intervals and only required one dose of morphine today.

I want to take her home so badly! I have to remind myself frequently- "one day at a time," this is a long journey we are on. I know Brian feels the same, but I will let him speak for himself. Maybe one of these days he will want to "blog!" :-)

We brought Evelyn's swing from home to the hospital. She loves it. I captured some of her swing time today in the video below. It is the best feeling in the world to make her feel comfortable and happy.

The Best Mother's Day Gift!!

2009-05-09T12:28:00.001-07:00

Evelyn had a wonderful night last night. For the first time in quite a while, she slept and fed like a healthy, happy baby. She slept from 11pm to 230am, then 230 to 630!!! Each time she woke, she had 4 ounces of milk! Just FABULOUS!! Made mommy so happy!

The morning brought more good news........to summarize:

Her WBC (White Blood Cell) count increased again- 1.39. This is what we want to see!

The TPN (nutrition via IV) was discontinued for now. She is eating well on her own and the mucositis has diminished due to her increasing WBC count, therefore she is interested in eating again. Also, the continuous IV morphine was discontinued so she now receives morphine as a one time dose as needed only.

She has no fever. Her blood cultures returned with negative results...no bacteria found.

She gained a little weight, now 8.6lbs. I can't wait until she reaches 9lbs!!

The LP (Lumbar Puncture) was completed on Friday. The results indicated NO leukemic cells in her cerebral spinal fluid!!! Major sigh of relief...... Also, no leukemic cells noted in her blood. Another massive sigh of relief...... By way of the LP, Evelyn received a round of chemotherapy directly to her spinal fluid. This is called TIT (Triple Intrathecal) Methotrexate, Cytarabine and prednisone. This was her third TIT via LP. She tolerated the procedure well. She is such a tough little cookie!

Next step, is to proceed with the"Induction Intensification" chemotherapy which is high dose methotrexate when she reaches an ANC (Absolute Neutrophil Count) of 0.5 or 500. As of today she has climbed to 300!! Almost there! Later down the road....the bone marrow transplant but more rounds of chemo before we reach that major event.

Also, her physician indicated that he may be able to discontinue the antibiotics for a while since her counts are increasing and she is at less risk for infection. This is also very good news because I have serious concerns regarding the potential side effects of such a long term and aggressive course of antibiotics.

Lastly, her doctor's quote today, "I am optimistic." I didn't ask him to elaborate because it sounded just perfect and I didn't want to lose sight of a simple statement that means so much to me, to us, to Evelyn.

We won a few small battles today. It feels good.

Happy Mother's Day to all you Mom's out there!

Thanks again for the enormously generous and thoughtful gifts we have received, kind wishes and frequent correspondence keeping us in your prayers and thoughts.

Evelyn had a good day!

2009-05-04T21:24:00.000-07:00

Evelyn's WBC count increased, which means she is on her way to reaching the necessary neutrophil count to begin the next round of chemotherapy which is the "induction intensification" phase.

She is resting more comfortably and for now the continuous dose of morphine appears to be therapeutic.

She maintains some interest in eating. We are delighted any time she takes the bottle!!! She receives supplemental nutrition daily via TPN.

She has no infection or fever. Her heart rate is within normal limits. She received more packed red blood cells today to avoid increased anemia.

She had a good day, therefore I had a good day.

As always, thank you for caring, sending us your frequent messages of love & support. It helps more than you can ever know.

Love,

Bobbie, Brian & Yogi

Almost looks like she is smiling....

Is this the cutest "pouty" face you have ever seen?!!!

So cute!

Chubby cheeks...the steroid medication make my cheeks super chubby!
Thank you Auntie Jenny for my musical glow horse!

This video is for Uncle Matt......Yogi play time, Cue & "Hulk Juice."

Bath Time Video

Update May 1, 2009

2009-05-01T23:57:00.000-07:00

Evelyn 2009 & Mommy 1972!

Quick Update..........Mommy is sleepy

Good News:

Evelyn continues to enjoy eating. She has a good appetite considering the circumstances. She is receiving TPN at night to provide additional nutrients and to help sustain her weight.
No Fever
Heart Rate down- within normal range
Diaper Rash/wound area healing. This is very exciting as we are concerned about infection given her current immune suppression.
She is looking good and her champion spirit is shining through.

Evelyn's next round of chemotherapy is on hold until her ANC (neutrophil) levels reach 0.5. Evelyn has completed the induction phase and will move on to "Induction Intensification" which will last 3 weeks if all goes according to plan. There may be delays in between chemotherapy doses and we are told this is not unusual.

The search for a bone marrow donor has begun as well. Likely to be a chord blood match.

I am in the hospital room staring out at the 12:20 am view of Westwood Blvd. I wonder when I will begin to accept this as my new life, as my normal state of being? Is there really an "acceptance phase?" Instead, for now, I remain consumed with feelings of anger, disbelief, shock and overwhelming sadness. What am I doing here? How did I get here? When will I wake up from this horrible nightmare?

2009-04-28T23:20:00.000-07:00

It warms my heart to hear from everyone with your kind wishes, thoughts and prayers for us and Baby Evelyn.

Evelyn is beginning to experience the painful side effects of her aggressive chemotherapy regimen. She is now on a continuous low dose IV of morphine so that she may rest comfortably. She has been started on a new daily medication called GCSF. This medication helps to rebuild her WBC count and specifically neutrophils so that she can fight infections. Also, she has a mildly increased temperature so there is concern regarding infection. Her doctors have sent several cultures to help identify the source of infection. At this time we would like to limit visitors due to the risk of infection or at least until they identify the cause or rule out infection all together. We would be happy to visit with you in a waiting room at the hospital, take a time out somewhere close to the hospital or visit with Brian or myself on the days/nights we rotate being at home.

She is scheduled for chemotherapy (Methotrexate) on Friday but must first reach a neutrophil count (ANC level) of 0.5.

I have learned new information by talking to her hemo/onc doctor regarding some of the scientific information specific to her diagnosis. I had been hesitant to take on this information as Brian and I realize that we need to digest information gradually and need to first allow ourselves to handle things emotionally then move on to more medically based information. As mentioned in previous blog, Evelyn has what is called congenital infantile ALL leukemia. With further discussions we have learned that the reason this happened is unexplainable and there were no warning signs or anything that we could have done differently. Essentially it is caused by a gene that identifies a chromosome and causes it to translocate. I had a CVS (test early on in pregnancy to identify any abnormal chromosomes and there were none- the test came back negative). Apparently late in my pregnancy, a chromosome translocated to another chromosome which formed a leukemic cell. I am translating this in simple terms so hopefully I am not misconstruing the information. Specifically, Evelyn has MLL translocation of chromosome 11 and 4. This is a very aggressive form of leukemia. Chromosome 11 attached to 4 and became a leukemic cell. The bone marrow is the factory which produces WBC's, RBC's and platelets. The leukemia cells became present in the bone marrow as a result of the MLL translocation and began mutating rapidly. Ultimately, the leukemic cells crowd out the healthy WBC's, RBC's and platelets causing the leukemia cells to spill out of the bone marrow, which leads to among many things; anemia, hyperviscosity of the blood which can result in stroke, heart failure, respiratory arrest, etc.. The great news is the team at UCLA Medical Center acted quickly and prevented any of those horrific things from happening. They brought her WBC count down to almost zero within a matter of two days.

Again, no one understands why this happens, it is extremely unusual in infants but even more uncommon to happen prior to birth. The odds working against Evelyn is her young age, upon diagnosis her WBC was over 270,000 (50,000 is considered high risk) and leukemic cells were found in her cerebral spinal fluid. What is in her favor is how rapidly and successfully she responded to the initial treatment of the blood transfusion exchange and high dose multiple chemo in the first week. Essentially it wiped out the leukemic cells in her blood, CSF and bone marrow. Also, she is considered CALLA + or pre-B Cell. Therefore because of Evelyn's unusual prenatal presentation, this could result in a successful recovery, because this is so uncommom Evelyn does not fit into general statistics or case studies which makes her wonderfully UNIQUE! She will battle this illness, WIN and create her own miraculous medical story which will hopefully help save the future lives of other infants affected with leukemia.

If you are curious for information I would urge you NOT to search the Internet. Although the web is a great source for all things, it can be frightening and often times the information you locate upon a general search will seem overwhelmingly negative. Evelyn's case is very rare, therefore there is not much data that would specifically identify with her situation.

Our goal is to keep sending positive energy, support and prayers to Evelyn every minute of every day. She can beat this because she has so much love, support, faith and an incredible medical team working to move her towards remission. Again, we must take it one day at a time but ultimately we pray she makes it to remission, then bone marrow transplant, then remission, then permanent remission. She can be our miracle baby and with all the love and support she has she will do just that! She is so strong, I can't even begin to describe how such a little person can have so much will to live.

Thank you everyone for your support and prayers.

Love,

Bobbie, Brian, Evelyn and Yogi

Eve Update Sunday April 26th

2009-04-26T13:50:00.000-07:00

Evelyn continues to show her fighting spirit every day. She is starting to exhibit some of the chemotherapy side effects, mainly the mucositis. Unfortunately, she is having more episodes of vomiting which is directly related to the chemo and mucositis. She is no longer gaining weight. Her team of physician's are pleased that she has continued to be motivated to eat; however it is likely that she will eventually require TPN intravenously to give her digestive system a break, and decrease the likelihood of more vomiting. Also, we have been told that it is likely that she will require pain medication (morphine) as a standard dose or by IV continuous dose small dose. Although this will be agonizing to see, we have been advised that it is normal given her chemotherapy regimen and is ultimately helpful to her as it gives her body the ability to simply rest.

She is in the 3rd week of a 6 week induction chemotherapy regimen. On Friday, she will receive a high dose of a chemotherapy drug called Methotrexate. It breaks my heart to think about some of the painful side effects she will have to endure. Some days (like the day I am having today) I feel as though Evelyn, me and Brian are being slowly tortured. I have my moments of getting angry and wishing I could demand an answer from GOD- Why is this happening to us??!!

As reported today, by one of her doctors, "the silver lining to all of this so far, is she responded extremely well and rapidly to the initial chemotherapy, even better than they anticipated." Essentially the blood transfusion exchange and immediate first week of multiple chemo drugs resulted in the obliteration of leukemic cells from her blood, spinal fluid and bone marrow. The remainder of this marathon is to keep the aggressive leukemic cells away and ultimately wipe them all out so that when she receives her bone marrow she can begin making healthy WBC's for the remainder of her life. More good news is that her most recent lumbar puncture on Friday, the pathology results once again showed no leukemic cells in her spinal fluid.

I live for the small bits of positive news, each little battle we win gets us one step closer to winning the war.

Baby Evelyn Update April 24th

2009-04-24T17:01:00.000-07:00

Evelyn Video-Spirit of a Storm

I can burp with the best of them, possibly out burp auntie Jenny!!

My Binky makes it all okayMommy loves you so much!

Daddy's Girl

Yogi sitting in Evelyn's room...........he misses his baby sister so much. :-)

"God gives us mountains to climb.........and the strength to climb them. " On April 10, 2009 we found ourselves at the foot of the proverbial mountain.

Evelyn continues to amaze us every day with her strong will to kick this leukemia's ass!! She is so sweet and beautiful. I can only imagine how the chemotherapy makes her feel but somehow she manages to seem peaceful and happy most of the time. Of course she has periods in which she is in obvious discomfort either from the effects of the chemotherapy drugs or from mucositis (a side effect of the chemo) and it is a helpless and emotionally painful feeling for us, as we want to make it all go away but cannot. Her nurses do a good job intervening and providing her with pain medication quickly so we can keep her as comfortable as possible.

Evelyn is still eating and holding her weight. She received a blood transfusion on Thursday and additional platelets to prevent anemia and to keep her RBC count and platelet count within the therapeutic range. She quickly perked up after receiving the blood transfusion and her fighting spirit resurfaced.

She underwent another lumbar puncture under sedation and intrathecal chemotherapy (chemo injected into her spinal canal) today. She handled the procedure well and when she returned she quickly voiced her desire to eat and we heard her loud and clear!!! She took 4 ounces of milk immediately following the LP. What a STUD!

Brian and I are now alternating time at the hospital, spending two nights on and one night at home. I am home tonight and although it is agonizing for me to leave Evelyn, I need the time away to rebuild my strength and get some rest. I am confident that Daddy is doing a wonderful job at making her feel safe and happy. I find that by the end of day two I am getting angry and irritable and I am sure Brian feels the same way. We both need to be rested so we are strong and positive for Evelyn everyday.

Currently, Brian and Grandma Doyle are with baby Evelyn and she is in good hands.

Tomorrow will bring Mommy, Auntie Sissy, Grandma Tomblin and lots of wonderful friends; so much love and strength to give Eve each day.

As always, thank you so much to our family, friends and the medical professionals at UCLA for everything you are doing to hold us up during this time.

Many of you have asked "what can I do to help," Brian and I are so blessed to have the support from our family, friends & professional colleagues who are taking such good care of us so there is not anything specific that we need. Therefore, I figure the best way to help is to either donate to the Leukemia & Lymphoma Society and do the employer match program (if that is an option for you), sign up to raise money and participate in a Team in Training event or donate blood. Eve will likely need several blood transfusions so it is indirectly a wonderful thing to do for her.

L&L Society- Donation Link:
https://www.leukemia-lymphoma.org/all_donate?item_id=8072

The donations can be "designated in honor of Evelyn Grace Doyle."

Team in Training Link:http://www.teamintraining.org/

National Blood Donor Registry: http://www.americasblood.org/go.cfm?do=Page.View&pid=3

Local- here in Southern CA: http://gotblood.ucla.edu/

We continue to take this one day at a time and look forward to the day we bring Evelyn home once and for all. We must stay optimistic and strong.

Daddy and Eve Video

It Won't Be Like This For Long........

2009-04-21T19:39:00.000-07:00

Eve Video

"It won't be like this for long"

Our sweet Evelyn continues to fight this battle with an unrelenting will to survive. She is in the induction phase of chemotherapy and responding very well. She currently has no white blood cells or neutrophils therefore she is at a high risk for infection. Her physician's anticipate this to continue for several weeks as part of her treatment plan, which is to remove all leukemic cells from her blood, spinal fluid and bone marrow. The goal is for her to reach remission, be discharged home for one to two weeks, then she will be readmitted for another aggressive course of chemotherapy prior to the bone marrow transplant. The bone marrow transplant will require another 8 to 12 week hospitalization.

I hesitate to ask too many questions or allow my mind to wander too far ahead. I need and want to take this one day at a time. I was looking at video clips I filmed of her in the ICU when she was so sick and although they were horribly painful to see, I was so happy to see how much better she looks and feels at this time.

She is at risk for developing a condition called mucositis and her physician anticipates this will eventually happen while her WBC count is down. Each day I am relieved to see that she continues to have an appetite and does not appear to be developing symptoms or uncomfortable from the mucositis.

Taking pictures of her, videos and writing is therapy for me. I don't remember what my life was like before she arrived and I don't want to ever imagine life without her.

Happy One Month Birthday Evelyn!

2009-04-19T19:29:00.000-07:00

Despite the ongoing fluctuating emotions that I feel, I am happy to report that Evelyn is responding well to her current chemotherapy regimen. She amazes me everyday! She is such a tiny little creature, brought into this world and we were prepared to make her so comfortable, loved, spoiled, embraced..............instead she faces this painful battle that we could have never foreseen.

In the last two days, she is eating fantastic, continues to be motivated to eat approximately 4 ounces every three hours. She is resting and seems more comfortable in the last few days. As you can see in the photos below, she has been removed from her oxygen and many of her monitoring devices. Her labs continue to come back with excellent results. She had a lumbar puncture/spinal tap on Friday and the results were that they did not at this time find any leukemic cells. We are awaiting the results of her bone marrow biopsy.

I am so happy that she currently appears to be comfortable and her main focus is eating, having her diaper changed and being held by mommy and daddy. For now, that is all that we can ask for.

The team at UCLA is moving forward with the process of finding a bone marrow donor. Based on the information we have thus far, it will likely come from a cord blood match. Evelyn's physician does not forsee difficulty finding a match given her young age and our ethnic background.

Evelyn celebrated her ONE MONTH BIRTHDAY today. She was accompanied by Mommy, Daddy, Gramps and Gram Doyle, Gram Tomblin, Auntie Sissy, Lynn, Mary, Heide and Liz. Unfortunately, Evelyn could not indulge in the ice cream cake but I happily ate an extra piece on her behalf.

Again, I cannot thank you enough, our friends and family for loving us so much and your selfless acts of kindness. I am just astonished everyday and blessed at what amazing people I have in my life. I cannot thank you enough. Some days I may feel hopeless, angry and detached but please know that your kindness does not go unrecognized for one moment.

Evelyn is a fighter! Our Champ! Pray she defeats all odds and is our miracle!

Love, Bobbie and Brian

Birthday Girl

Making Mommy and Daddy very happy!Just before birthday girl woke for her celebration Yogi loves his little sister so much!
Mom- that flash is obnoxious!!!

Pretty blue eyed girl! My puppies protect me

Our Fearless Little Angel

2009-04-17T20:18:00.000-07:00

It is with indescribable grief that we have learned that our baby Evelyn Grace has been diagnosed with Congenital Infantile Acute Lymphoblastic Leukemia MLL-R. Before I explain how this tragic news transpired I want to first THANK ALL of You, our amazing friends and family for the outpouring of love, support, concern and prayers that we have received. It means so much to us and we are hopeful that all of your prayers will be answered.

As you can imagine, we are not able to respond to individual calls and emails as much as we would like, as we are spending all of our time with baby Evelyn and the medical team at UCLA Medical Center. I am going to do my best to update this blog on a go forward basis so that everyone can be apprised of Evelyn's progress. I will use this as a form of personal therapy and expression for myself.

Evelyn was born on March 19, 2009 @ Torrance Memorial Medical Center. She was born with what appeared to be bruises on her skin in several locations. As a result she was taken to the NICU for numerous diagnostic testing and monitoring to rule out congenital anomalies, organ involvement or any other medical problems. She was diagnosed with hemangiomas, which upon discharge appeared to be "involuting" or diminishing in size and color. Evelyn was scheduled to be seen at UCLA dermatology on Friday, April 10th in an effort to treat the hemangiomas in a more aggressive fashion. At that time we were sent for lab work to establish baseline blood work and to ensure her platelet count was within normal range. Later that day we received an urgent phone call from the UCLA dermatologist indicating that Evelyn had an extremely elevated WBC count and needed to return to UCLA immediately to be admitted.

Upon our return to UCLA, we learned that Evelyn had leukemia and was in grave danger as her WBC count was extremely high at 266,000 which could lead to a CVA "stroke" or respiratory arrest. Evelyn was immediately taken to surgery to insert a Central Line for intraveneous access for an emergency blood transfusion exchange to remove the white blood cells and replace with healthy white blood cells. She was admitted to the pediatric intensive care unit and later endured two rounds of hemodialysis and chemotherapy started immediately. The lesions on her skin are actually a condition called leukemia cutis. Without going into greater detail, we received the most devastating news by learning that the MLL rearrangement associated with her ALL is a very aggressive form of leukemia with a poor prognosis- 25% chance of survival is what they tell us.

Congenital leukemia occurs at the rate of 1 per 5 million births. Scientifically there is no explanation for why this occurs. I have a very hard time wrapping my head around that. Why Evelyn?

We will take this one day at a time and our goal is to remain positive and strong for Evelyn.

The good news is our little Evelyn is a fighter and is so extraordinarily tough! Her new nick name is "Champ!" She is battling this disease and we are with her every step of the way. She will require a bone marrow transplant in the upcoming months. She is receiving the most tremendous care at UCLA and we are confident she is in the right place. Evelyn has been blessed with an exceptional team of pediatric hematology/oncology physicians. She has an incredibly talented team of medical professionals providing excellent care every day.

Needless to say, the pain, fear, and devastation we feel there is no words to describe. I simply want to thank all of our friends, family, colleagues, medical team @ UCLA and EVERYONE for your love and support. Please continue to pray for Evelyn, it is working.

With Love,

Bobbie and Brian Doyle

ICU- Beating the oddsLots of Love from Auntie Sissy

I am a fighter.........Looking good!

Relaxing comfortably with my glow worm

Lots of Love from Mommy, Auntie Lynn and Auntie Liz

Holding it down with DadMy Doc can't even believe how ALERT I am!

Chilling with my Binky and Happy to be out of the ICU!

2009-03-30T12:30:00.000-07:00

We welcome with joy our new daughter, Evelyn Grace Doyle.

Born March 19, 2009

7 lbs 15 oz.- 19 3/4 inches

Evelyn Video

"Welcome to the World"

A forced smile in between contractions!

Proud Pappa!

Leaving the hospital..........HURRAY!!!!

Eve's First bath.......and Yogi got in on the action too!

First Bath! She loved it!

Little Chicky

9 More Days!

2009-03-14T09:06:00.000-07:00

Brian and I are very excited to report that we have almost reached the finish line! It is hard to believe we will be "mom" and "dad" soon, both an exciting and somewhat frightening thought! I am feeling very round and slow these days. We are looking forward to meeting our baby girl very soon.

We had the prego photographs taken when I was about 8 1/2 months pregnant, a great keepsake for years to come.

HUGS to everyone!

Before the Stork

2009-02-15T16:15:00.000-08:00

I had a 3D 4D ultrasound on Valentines Day at a really unique place called "Before the Stork" in Los Alamitos, CA. Brian was able to relax on a cozy couch, with soothing music playing in the background and view a big screen of the baby as she moved & sucked on her fingers. She even opened her eyes one time. I was able to relax on the ultrasound table and view the big screen as well. It was a total coincidence but a really fun thing to do on Valentines Day! We were able to watch our baby girl in action for the first time and leave with a DVD 4D movie and and 3D images. Such a great experience!!

Poor Girl is going to have Big Feet. There is no way for her to avoid it! :-)

Sunsets and Doggies

2009-02-02T14:52:00.001-08:00

Seal Beach Sunset on the Marina

Beautiful Hermosa Beach Sunset-Dec 2008

Yogi's Day at the Beach.

I have this great flip video camera and I FINALLY figured out how to work the music mix feature! I might just become dangerous with this new toy!

For your viewing pleasure...Yogi's recent day at the Doggie Beach in Huntington Beach, CA.

Almost there!

2009-02-02T13:30:00.000-08:00

Time for a BIG update........

Cruising the bay with the in-laws, Brian & Yogi

Successful completion of crib assembly! Thanks Mike!

Santa came to visit.

December 2008-7 months prego

Demetria, Savannah, Sabrina & Brian

Turkey Prep! Just how I like my men..........In the kitchen. :-) LOL

Santa Yogi

Thanksgiving

Duffy Boating in Los Alamitos Bay- with my brother, Deke. AKA- "the Deker"

Thanksgiving- Mary, Sissy, Me, Lynn & Papi

The holidays were terrific. As usual, they came and went in a blur. Brian and I stayed in California this year and hosted both Thanksgiving and Christmas since I was too far along in my pregnancy to travel back east.

My brother, Deke and nephew, Ryan flew in from Denver to hang with us for a few days after Thanksgiving. Our friends, Gerritt, Mary and Lynn came over over for Turkey day. It was terrific having them and we had a great time. My sister, Demetria and niece, Savannah joined us as well, but they only had to drive from "the valley." Thank goodness I have a little family here in California. :-)

For Christmas, my sister, two nieces and nephew all came over to Seal Beach for Christmas Eve and Christmas Day. We had a blast watching holiday movies, watching Brian's train go around the track (inside joke) and just taking in the spirit of the holidays. Brian's parents flew in from Boston on December 26th and stayed through New Years Eve day. We had a terrific, relaxing holiday.

I am now 33 weeks pregnant. I am a giant waddling penguin! :-) Overall, I have had a good pregnancy and am thankful for that. This last trimester has brought some level of discomfort but other than than I have been blessed. Brian and I are definitely looking forward to this baby girl's arrival, which is now scheduled for March 24th.

I had two baby showers in January, one from work and the other hosted by my sister and girlfriends. I am astounded by the generosity and thoughtfulness of my friends and work colleagues. I feel so fortunate to have such loving and kind people in my life. Needless to say, with all the lovely gifts from family and friends we are ready for this baby to arrive. We've got the equipment to do the job!

(Baby shower photos scroll down......)

I hope you all had a wonderful holiday and that 2009 brings you joy, peace and much love!

XO XO

Bobbie and Brian

Doyle Baby Shower

2009-01-31T16:29:00.000-08:00

Make a Smilebox photobook

Lynn put together this sweet video of advice for me from a few friends at the shower. It's a great keepsake! Thanks Lynn!

Southern Hospitality

2008-11-16T16:46:00.000-08:00

Hello All! We finally traveled to Savannah, GA and Charleston, SC. Both locations were wonderful to see, I would have loved to stay longer. Savannah is gorgeous with its beautiful Spanish moss trees and sleepy southern feel. Charleston was full of southern charm, a bit more cosmopolitan, with lots to do and great shopping.....the bonus is it's surrounded by water everywhere you look. I loved it! Daniel Island and Mt. Pleasant in Charleston were my favorite locations in terms of a perfect place to live. I am ready to move!

Baby update- I am 21 weeks prego, so just starting month 6! The ultrasound pictures were done at 19 weeks. Cute little profile........ :-)

Yogi

2008-10-23T17:45:00.000-07:00

The world according to Yogi. It's ALL GOOD!

Buckle your seatbelts and enjoy the ride!!!

2008-10-21T21:07:00.000-07:00

HELLO!!

Welcome to the first installation of Bobbie and Brian's blog. Our fantastic friends Mike and Cara introduced me to the world of blogging. It is such a great way to keep in touch with everyone, especially those who live far away. We miss you Mike and Cara!

Let's back it up a bit to capture the full story......

The journey begins when Brian and I met at a "late evening house party" in June 2000 in Manhattan Beach, CA. (there is a story there........as you can imagine! ;-)

We eventually made our way down the aisle in May 2006.

Honeymoon in Turks & Caicos- It was such a wonderful vacation, so relaxing, peaceful and beautiful. We spent lots of time just lounging, did some scuba diving, fishing, fine dining and lots of time at the bar with our Jamaican friends! :-) Brian had his first scuba experience and loved it! I would scuba dive everyday if I could. I think I was a dolphin in my former life.

We left the South Bay, headed to the "OC" for job related reasons in November 2006. We have been living in Seal Beach since that time and love it!

On my birthday, July 16th I found out that I was expecting!! What a fabulous gift! :-) The first trimester was a roller coaster ride! There must be a vow of secrecy amongst women to never divulge the misery of the first trimester, otherwise women would never get pregnant and evolution would cease! Needless to say, it was wonderful news! I am now 5 months & 1 week pregnant. We recently learned that we are having a girl. My due date is April Fools Day; however, she is expected to arrive via c-section in late March.

First Ultrasound August 20, 2008.
Second Ultrasound September 25, 2008.

On the 4D ultrasound she was literally doing karate in there! She was all over the place!

She was waving "hello" in the 3rd shot! :-)

Brian and I have a lot of planning and preparation in the next 4 months. Check back soon for more baby updates and to hear about our trip to the Savannah and Charleston.