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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

Home Hospice

Tonight when I leaned over while brushing my teeth to get ready for bed, I noticed something entirely out of the ordinary. There was a hot pink spot on our little decorative fingertip towel that rarely gets used because we don't have many super nice towels in our house like some people do. Upon closer examination I could see it looked pretty permanent glob of what appeared to be dried bright neon pink nail polish.








I smiled.








For a little over 3 weeks we have been home. It has taken an army and a mound of paperwork but the insurance has finally approved Brooke to receive treatment and transfusion services as well as hospice services concurrently so they will come out to the house next week. When we left Michigan, Brooke was in a lot of pain and required some pretty major narcotics to alleviate that pain round the clock.








For the past week or so she has had no pain that would require pain medicine at all - not even tylenol.








Nobody can look me in the eyes and tell me God is not real and that we are not seeing what we hope is another unexplainable miracle in our baby girl's life.








But we do know that as of her last scans, she was in a lot of high risk with the cancer that was not only packed into her bones but that had made her liver so enlarged the doctor was trying to explain to us on the scan how compressed her right lung was becoming and trying to show us where her diaphragm was supposed to be. She was showing us the new spot in Brooke's left lung that she said could begin to affect Brooke's breathing and thus prescribed heavy anxiety medication to keep her calm in the event she began to feel like she couldn't find her breath. Brooke's back and bones and abdomen and body were all in immense pain as the cancer had grown and spread post stem cell rescue during the waiting period for engraftment and post the liver biopsies.








God leads, we pray, we follow.








Our prayers led us to Dr. Sholler in Michigan and we know she too prays for her patients. The scientists in the labs who analyze and test Brooke's cancer cells for genetic mutations and targets and then test them with drugs to turn on or off the pathways that allow those cells to be immortal cancer cells instead of regular cells that simply go through the normal cell cycle and die, have told us many times they are praying for Brooke daily. If there is a division between the science that Brooke is benefiting from and the faith that is leading it, we have never seen it.








We know God hears our prayers and that he also has plans much more than we can possibly comprehend for what knowledge He reveals to us as we dedicate our life and work to His glory. We know it may not be His plan for Brooke to live. We know it may not be his plan for Brooke to die. We know we are not meant to know.








So we just live.








We take life day by day for what it is in the rich moments of love and laughter when we have them and we cling to them desperately because we know we will never have these moments again. We know that IS life, we just know it more acutely perhaps than other parents would who may be wishing some phases of childhood or adolescence would hurry up and pass.








We look with admiration at a hot pink nail polish glob on the best hand towel in our humble home and know that we have a little girl who is on one of her longest stretches at home since her diagnosis without any hospitalizations. We know she is home and requiring less medication for pain and not more. She is still needing platelets at least twice a week and blood once a week, but her immunity has remained a bit higher with the targeted drugs and more metronomic chemo regimen she is on and this is quite a huge blessing compared to where she was before the stem cell rescue and engraftment. We know being able to have a home hospice team on board is like a terrifying necessity for her because we don't know if the compassionate plan she is on will work.








When the incredible Oso Creek Animal Hospital brought Brooke in (thanks to her very special friend Maryann) and gave her a vet coat with her name embroidered on it (by another very special friend, Chris), a pink stethoscope, a doctor bag with a stuffed animal patient and an honorary doctorate in veterinary medicine, it was unbelievable. But one of the most extraordinary gifts of the day actually came from Dr. Vaughn's son, Dustin, who wrote a very very special bible verse to Brooke:








2 Cor 3:12




Since we have such a hope,




we are very bold.








Oh Dustin.... thank you. You had no idea how badly we needed to see that verse.








"Such a hope" it is.








Faith, hope and love are what we have lived by nonstop on this roller coaster ever since the fall of 2010 when our lives forever changed. We always had these three in our lives and marriage but truly, not at the forefront like they are now.








Fear would be a constant long walk in the dark over a vast frozen desolate lake never knowing when the ice may suddenly be too thin and pull one or all of us under to frozen icy depths that we could never recover from. We lose our fear in the face of faith, love and hope. We lose our fear when we feel the warmth of God's embrace. We lose our fear when we let go of trying to be strong and instead just let Jesus lead the way as the only true light in the darkness.








People hear hospice and gasp or cry.








We did too. We still do.








But we are bold because we have such hope and that hope changes everything.








We continue to pray that this individualized cancer therapy that Brooke was sent home on or any new results that emerge will continue to help her fight and live and lead to her Earthly cure against cancer. We pray for guided wisdom and bold strength for whatever doors we are asked to walk through with her next and we pray those doors will have more inexplicable miracles in store. We mend our broken spirits with the threads of good times we share together now and regrow our daily garden with the seeds of faith, sunshine of hope and flowing rivers of love that only our Heavenly Father provides.








We also look forward to seeing a day we never knew would come - Brooke's 8th birthday - which is fast approaching and filled with the selfless wish of a true giver of a very young child with an old soul. We hope that if you are able to, that you can join in this celebration alongside us on the evening of her birthday or share in her celebration virtually from wherever you are.








Brooke is going to be SO surprised!!!!








Last night, Brooke and I baked oatmeal cookies together and we hope to maybe make some peanut butter ones tomorrow. It makes me so beyond happy to see that huge mess in my kitchen after Brooke misses the mixing bowl (a lot) and gets flour everywhere. Praise God she feels so good to have these moments continue!!!








Thank you for your endless love and prayers for Brooke and our family. It helps us so much more than you could possibly ever know.
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Comments

34 Comments

Cyndi Duenas
By Cyndi Duenas
Brooke is such an inspiration to so many but I'm sure you already know that......I often speak of her even though I have not met her in person. I have a granddaughter who passed 7 years ago and her name is "Olive Lucy", her daddy and mommy (our daughter) and two siblings live in Staten Island, NY. And when I mentioned Brooke's name what a small world "Lucy's" daddy has actually met Brooke in New York how awesome is that and he so remembers her. He works at the Hospital in Manhattan as a "Patch Adams" kinda Clown Doctor. Whenever life takes a crazy turn I look at Brooke and her beautiful smile and your strength that you all hold each other up. I also know that the Lord is always by her side He is such a great Comforter.

We keep you all in our prayers and are Eternally grateful for having come to know of Brooke and her great gift to all of us...........sharing her beautiful spirit it reminds me of a quote I once read......"If children with terminal cancer can find love, joy, beauty and peace in each day---and they do---why don't we" it was a quote in a seminar I attended many years ago. When I read it recently I immediately thought of Brooke's ever contagious beautiful smile..............I believe that we are witnessing and angel truly amongst us all she is teaching all of us.

I hope and pray that as the Lord blesses you and your family that the strength that we pray for will help to enjoy many more days ahead of baking Oatmeal, Chocolate Chip and whatever kind of cookie comes to mind she is so cute and I'm sure the cookies were exceptionally yummilicious.

We love you Brooke and please know that we pray for you daily and your family. Hugs to you and butterfly kisses.................
Nigel Burrell
By Nigel Burrell
ALWAYS covering Brooke and you all with my prayers.

Love and hugs from the U.K.

Nigel xxx
Lauren Hicks
By Lauren Hicks
I thought of Zephaniah 3:17 when I read this. I volunteered at a camp for kids with special needs once, and they would always sing it over the kids before they would leave. So, here is Brooke's song from Kansas:
"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."
Dear sweet Brooke, I know He delights in you and sings over you daily. I will be praying that you can feel His love washing over you in incredible waves.
Lynnett Jankuski
By Devin/Lynnett Jankuski
Praying for you & sending love always. I am an RN so I know how hard the decision to involve Hospice must be, but it is a great asset to making sure Brooke's pain is controlled while you continue on the individualized cancer therapy. God Bless,

Romans 15:13, May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
Toni Norrell
By The Norrells
Beautiful picture. Prayers for you and your family. We love you.
Joyce Nosker
By Joyce Nosker
When I came to, and began reading 2 Cor 3:12, the lights flickered here in this room. I read the verse again, and again the lights flickered. I know God hears our prayers and that He is helping Brooke's medical team provide the best care possible.

I pray that Brooke's reduced pain level will remain, along with no anxiety. Praying for all of your family.

www.caringbridge.org/visit/larrynosker
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Shyla Patera
By Shyla Patera
Nail polish, oatmeal and peanut butter cookies and being a double big sister!! Wow ,what an amazing year Brooke!! Praying !
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kathy stennett
By kathy stennett
And again we say amen. Thank you Lord for this family and for holding them close.
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Sandy Daron
By Sandy
Jessica,

My heart is heavy for the decisions you are having to make. I am soo thankful you are home. What a comfort. I pray Hospice will be a blessing and successfully keep Brooke out of pain.

I pray the treatment will begin to slow the cancer.

I love the the picture of Brooke cooking!! What a complete joy she is!

“’Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,’ says the Lord, who has compassion on you.” Isaiah 54:10

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
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Renee Cassidy
By Renee Cassidy
Prayers from Phoenix, AZ!