Brooke’s Story

Be humble in the presence of God's mighty power, and he will honor you when the time comes.  God cares for you, so turn all your worries over to him.   
1 Peter 5: 6-7

Welcome to Brooke's CaringBridge page! Please visit often to read entries, view photos or write a guestbook note!  (or send a note: Want to send Brooke a note? Her home address is: P.O. Box 154, Chapman Ranch, TX 78347

When your child is diagnosed with cancer, your life stops, changes course, and begins instead toward a path to do anything & everything to help your baby.

Brooke is our baby; this is her story... Brooke is 6 years old and loves pink, ponies, cats and dogs, and dinosaurs. She wants to be a veterinarian when she grows up. Brooke was always a healthy child with ear infections as her biggest hurdle. She had a great summer in 2010 and even learned how to swim! By August, a few, sporadic things began to occur. First she had a couple of strange, unexplained fevers. We thought perhaps it was her ears, or a bladder infection, but those tests came back negative. Then she had a couple of intermittent times she made a "volcano" (what she calls getting sick to her stomach)...again with no real pattern or explanation. In late September, she started having a strange limp and her right knee was becoming swollen, and it was getting harder for her to walk. By the time she had stopped walking completely, and not even crawling because of the pain, the pediatrician's initial diagnosis was Juvenile Rheumatoid Arthritis and he immediately wanted her to stay home and wait to see a pediatric rheumatologist. Meanwhile, Brooke had begun rapidly losing weight with less appetite, and at 3, she was barely crawling, or pulling up and holding her back, but she only complained of knee and tummy pain. A sonogram, nuclear scans, MRI/MRU and later tests revealed a large mass in her abdomen pressing on her left kidney, spine, and internal organs. They told us it may be a kidney stone...

On November 18, 2010, our lives forever changed. Brooke was diagnosed with stage 4, high risk Neuroblastoma, which is a form of nervous system cancer that had spread to her bone marrow.

We have faced this battle armed with prayer warriors, friends and family ready to help pull her through. Financially it has been incredibly challenging as we have gone from a two income, one home family to a family separated by thousands of miles trying to maintain two places to live and receive health care for Brooke on one salary.  We spent an entire year living at the Ronald McDonald House in New York for the surgery of the mass and to battle the bone marrow cancer through clinical trials.  While daddy has been home most of the time working and maintaining insurance coverage, Brooke and her mom have been home for only a few weeks in the past two years as we now have Brooke at the Helen DeVos Children's Hospital in Michigan seeking new hope in a ground breaking NMTRC genomics trial and personalized medicine against her aggressive type of recurrent stage IV cancer.  We are still praying for remission daily!!

Although now she is 6 and a half, Brooke continues to bravely fight this battle and our family has set up a special charitable account, the "Brooke Hester Donation Fund" at any Wells Fargo branch. 

Our faith is strong and we BELIEVE in the power of prayer!

Thank you for supporting our Brooke through her journey!

http://www.BrookeFightsBack.org


To learn more about Brooke's foundation, please visit 

http://www.BrookesBlossoms.org

or find her on facebook at 

http://www.facebook.com/BrookesBlossoms

pinterest page

http://www.pinterest.com/BrookesBlossoms

or Twitter

@BrookesBlossoms

Latest Journal Update

ruFFLeD FeatHeRs

Well, apparently I did it. I have officially ruffled a few feathers yesterday and today and well, to be quite honest.... oh well.


So tonight I was sitting at the computer closing out some emails and when I clicked on Brooke's Blossoming Hope page on facebook someone else in Texas had liked her page. I always appreciate new likes and her name was Jennifer, the same name shared by a few friends and even a close cousin, so I clicked on her profile. I try to do that every so often and no, I haven't snooped on all profiles of the 15,072 likes on the page, but I do try to peek at who is following my daughter's nonprofit efforts once in a while when I have a moment in time that allows it.


She was a beautiful woman.. About my age or maybe a bit younger. Her cover photo revealed a precious family of four with a happy husband or significant other, a daughter that looked like she was about Brooke's age and a sweet baby not much younger than Benjamin. They looked like a perfect picture of love and joy.


I was just about to click off of the woman's page when something caught my eye. It was something that made my heart sink and break almost immediately. This sweet spunky and fun looking mother must have majored in college in marketing or communications. I imagined for a moment her life. Maybe she was top of her class, maybe not. She apparently was from the midwest before living in Texas as an Iowan, so I wondered if she went to that school that raises millions of dollars each year doing marathon dances to raise money for kids cancer... maybe... maybe not. I thought of her out seeking a job one day in her field of expertise and being someone with a big heart who found a place in a society where she felt she could make a positive difference in the world.


This woman is a senior consultant for media relations of the Houston, Austin and San Antonio and likely wider areas of Texas for the American Cancer Society.


My heart broke for her.


Not because she doesn't look perfectly happy, but because I remembered what my own life was like. I was a driven, tenacious student who had a passion for children and that led me to dedicate my life to their betterment through education. At one point I was balancing a doctoral degree, teaching adjunct at the local university to future teachers at night while teaching elementary kids in the morning and going home to lavish in time spent with my baby girl and sweet husband after work and school. I did what I did because I was passionate. That is how I became an education consultant for my region in Texas which could broaden my passion and hopefully impact more sweet kids. And here I sat looking at this same picture of this woman and her family in a whole new light simply knowing she not only works for a society that she likely believes in, but is a senior consultant for them. A society that our society for the most part accepts as a society that does good for our society.


I closed my eyes and said a prayer right then. I prayed for her children, her precious babies that they would never ever be suddenly stricken with cancer like my baby girl was. I prayed for their little lives to be filled with happy healthy days and smiles. I prayed this also for their mother.


This all may seem strange to someone who has not walked in my shoes but as someone who lived and worked and thrived in my area of passion - advocating for and working in overdrive all the time to improve the lives of - young children... pediatric cancer hit hard and it hit fast no less than a freight train hitting me square in the chest. My child, my happy healthy perfect little girl, had cancer consuming and killing her. Over four years later she still has cancer trying to kill her. Without the answered prayers of one pediatric cancer research trial to the next she might not be here with us fighting still. Her pain might not be being kept at bay this very minute.


When Brooke was diagnosed all of our lives changed instantly. Brooke's obviously the most. But my life, career, everything outside of Brooke and her immediate medical needs, everything stopped. It was painful. It was horrible. I have cried so many nights knowing how childhood cancer permanently changed our lives.


And I was just a teacher who became a professor of teachers and later a consultant of teachers. A teacher of teachers on behalf of young children.


I looked at the sparkling smile of this mother with her two sweet babies at her side and begged God that she would never know what it was like to have one of them suddenly ripped apart by cancer. You see I think it would be worse for her. She would not only be dealing with the pain of her child's diagnosis and suffering but with the absolutely awful realization that the society she has dedicated her life to would not care enough to try to save her own child.


That no matter how awesome of a benefit she had been to them as an asset to their mission, they would not change for her or her baby. They would not suddenly give more than the meager one cent of every dollar raised to help fund a cure to save her daughter's life. They would not welcome her child in an American Cancer Society house if she had to travel to a doctor away from home. They would not have a summer camp or even a program to benefit her daughter. They would not even offer a penny for gas to help drive her daughter to and from one medical appointment after the next. The society she is dedicating her life to would turn a cold shoulder to her and her child and it would shatter her soul. I prayed so so very hard that she might never know such awful pain because all 12 major types and all of the rare types of childhood cancer know no boundaries, no racial limits, no age limits, and can suddenly strike any child at any given time. The fact remains that cancer is the #1 disease killer of our children and yet remains grossly underfunded while kids are fighting for their lives and dying. I prayed so hard that this was something this mother would never have to face.


I think I know, however, why Jennifer, the senior consultant of media relations across south and central Texas liked Brooke's Blossoming Hope for Childhood Cancer Foundation's page. She liked it because somebody with the ACS (or perhaps several somebodies) doesn't like what I posted there.


They are watching it with ruffled feathers and irritated grimaces wondering why I am bothering to even point out the specific facts. Facts like that around $475,000 was raised at last year's South Texas Cattle Baron's Ball in my daughter's name and that despite the fact that our family was told directly on many occasions that all of the proceeds of the entire event would go toward the pediatric cancer research project ("restricted research" their lovely term) of our choosing (based on their short list of 4-5 projects they later allowed us to choose from) and instead only $45,240 of the whole event was actually donated to pediatric cancer research. They used personal details which WE disclosed in good faith of Brooke's desperate fight for her life along with her intimate story of her illness and perfect pictures of her smiling eyes full of hope and light on all promotional materials for the event dubbed "Boots and Blossoms" in perfect Brooke fashion.


I imagined that Jennifer's daughter with such kind eyes and a contagious looking smile could easily be one of Brooke's friends. I imagined what if she had already heard about Brooke before my post and had been like so many other young kids helping out with our volunteer efforts and service project efforts and had already become a blossom making creativity or distribution volunteer... I wondered if that would change her mom's perspective on her end of the computer screen as she reviewed Brooke's page.


So after staring at her family photo one last long lingering moment, I clicked and closed the page. I found my cell phone, curled up in bed under my favorite soft blanket and started this post as the thumb writer that I am. I am not sorry for my earlier post that has now clearly ruffled feathers and if you are on Facebook feel free to take a look at it and maybe even become an addition to the 117 others who have already shared it circling it nationwide and globally. I just cannot sit back and watch another 30 years go by in my own home community without opening up about how exploited we felt - how dirty and used we felt - after the dust of the pig races of the 2014 Cattle Baron's Ball had settled and we realized that not even a single penny from that crazy fun part of the event with pigs running around went to support pediatric cancer.


Nothing from the poker tables at the event did either.


Nothing from the big silent auction.


Nothing from the table sales.


None of that money went toward pediatric cancer research.... Oh what Brooke's doctor could DO with nearly $475,000!!!!!


Here are the facts:


One foundation gave their annual $10K to kick start the "restricted research" auction.


One compassionate couple from Las Vegas gave $30K of their own money to the "restricted research" auction.


That means $40,000 of the $45,240 raised in the "restricted reaearch" auction came from TWO donors.


Thank goodness at least those two generous donors were there to help kids with cancer along with the others who helped raise the other $5,240. Everyone else who came to help support kids with cancer that fed the grand total of the whole event at $464,464 (not the amount disclosed to the newspaper for some odd reason), certainly did not know it wouldn't ALL go to pediatric cancer research as was promised to our family over and over again after we said, "NO... and NO again and then, well... if you are making change at the local level and giving it all toward kids cancer research as you say you are, then, well... we guess so.... so, YES."


This year, on March 28th you will not find our family at the Cattle Baron's Ball of South Texas (no matter how much I love Dwight Yoakum's songs and twang). Not when they are likely paying him more than they even bothered to give to childhood cancer research in our daughter's name.


NO thank you.


We won't make that mistake with our little girl ever, ever, EVER again. She'd probably rather hold Miranda Lambert's hand again anyhow with a wink and a smile for free.


If you want to know more about Brooke's Blossoming Hope nonprofit foundation and our efforts to both directly impact thousands of kids worldwide through our care package headwear program or our strong efforts to give over half of all we raise toward finding and funding cures through promising pediatric cancer research efforts, or to become one of our amazing volunteers, please feel free to join the thousands of others who have already caught on to our cause by visiting our website at:


www.BrookesBlossoms.org


Thanks for the positivity and support folks!!
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Comments

31 Comments

Sheree Slade
By Sheree and Hope
Why does this scream FRAUD to me? Why are theACS minions not held to the same degree of accountability and transparency that we are? Good on you for ruffling feathers. Hope they never feel groomed again - EVER!!!!!!
Huge hugs and butterfly kisses
Kate Schwartz
By
I'm glad you ruffled feathers- rightly so! This should be considered fraud and prosecuted as such. What a disgrace. You could sue and donate the sertlement to childhood cancer research. That would make the point clear. It's heart breaking. So sorry your family has to endure this.
Despina M
By Despina M
I am very glad you ruffled some feathers! People need to be made aware of situations like this. i am glad that you posted it on Facebook and I like many others shared it so that everyone will know the facts.

Jessica, you are an amazing woman. God bless and always be with you and your beautiful family.
Sarah Savickas
By Sarah Savickas
In my opinion, they should be charged with fraud. If anyone else were to raise money for one cause and then spend it on another, they would be charged and arrested. It is disgusting how they used your daughter.
Cheryl Stokes
By Cheryl Stokes
I think it's horrible the "American Cancer Society" promised all proceeds would go to pediatric cancer research, and then turned around and gave only a small percentage to pediatric cancer research. Our children deserve better than this organization is giving them. God Bless Brooke and her family!!
Katharine Kriegel Barden
By Katharine J. Kriegel Barden
I'm glad you ruffled some feathers. I hope that this gets national attention and that ACS rights the wrong that they did to Brooke and your family and that they realize pediatric cancer needs more funding.
Gayle Murdock
By Gayle Murdock
Hi Jessica, I live in a very small county in the Texas panhandle. I became involved in the relay for life after my Mother was diagnosed with lung cancer. After a few years we realized that we weren't meeting the needs of the people in our county with cancer. We live about 70 miles from the closest ancology clinic. Many people were struggling to even get to treatment. (The year of my mothers cancer fight gas was $4 a gallon) We formed a cancer coalition that provides grants to county members with cancer. They can use the money to travel to get treatment, pay the electric bill, make a wish, or anything else they need. While a small portion still goes to ACS most of the money directly helps people here. I have always felt we made a good decision but of course we ruffled a few feathers too especially with ACS.
Becky Pulley
By Becky Pulley
Jessica - I quit supporting the ACS years ago when I found out that not a penny goes to pediatric cancer AND the high salaries that they pay their people. I was told by one of their own who actually left because he felt he could not continue to solicit funds that were not going the cause and misleading people. Thoughts, prayers, love & hugs across the miles to you and your family. Becky in NC
Candyce McCann
By Candyce McCann, from Leesburg, VA
Jessica, I read your post that you refer to, and I remember when the Cattle Barons thingy happened. I was appalled then, and I'm still raging mad now. My family participates in Relay for Life, because my husband is a cancer survivor. But it wasn't until I started following Brooke and so many other childhood cancer families that I discovered ACS is so cold to children. We even met Gabriella Miller two years ago at Relay, with her Smashing Walnuts story. I thought then that ACS supported children. Boy, was I heartbreakingly wrong.

So I thank you, and others like Sarah Brewer (I do love The Bean :) ) for showing me the realities of childhood cancer. Three of my 15-year-old daughter's friends have been diagnosed in the past 18 months, so I've needed to educate myself. I never knew this side of it. I continue to pray for your family. God bless you all, and God love your darling Brooke.
Rhonda Mathis
By Rhonda Mathis
Truth ruffles feathers, but truth sets us free!!! Thank you for being Bold.....for Jesus and for pediatric cancer awareness. Honestly, I had no idea of these facts until you took the step for advocating for this cause!!! Praying for eyes and ears to be opened to the truth and hearts to be motivated to DO something about it!!! Standing on His promises!!