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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

5 Long Hours

After 5 long hours, Brooke was able to WALK out of the Emergency Room and WANTED to go out the doors, down and around the building, down the block and to the next building over where Grammie and Benjamin picked us up in a parking lot. THIS IS THE POWER OF PRAYER!!




For the past couple of days, Brooke has been experiencing pretty persistent pains but not in the same spot. It began in her neck (she noticed when she bumped it with her own hand playing on the bed) and her neck actually had an area of swelling to accompany the pain. It was pink and tender to the touch but not bruised. But the pain did not stop. The neck pain persisted overnight so I gave her Tylenol for pain. The next day it was back pain all up and down her spine. I gave her more Tylenol as this is what the doctor has advised to do since he said the T cells in action "given her level of disease" may cause pain, especially given her excellent rate of off the charts T cell expansion. Later that day her back pain became head pain and the next day it was pelvic pain on each side of her pelvis and even pain all over her abdomen and even her chest and she said that she really could not pinpoint one spot.. The pain subsided with either Tylenol, a warm pack or a hot shower. Then yesterday afternoon just before her teeny tiny 107mL platelet transfusion ("that's how it was ordered Mrs. Hester"), Brooke vomited. Then she was hurting and wanted to go to sleep... She woke up vomiting again and again during the night and again this morning and all throughout the day and it went from food to clear to green by the time the sun came up this morning. Green bile is not a good thing...




Brooke was resting with Grammie in the room and I took Benjamin outside to play while I prayed. Literally as I lifted my head from prayer about what else to do about Brooke, an answer came when my phone rang in my pocket. It was Brooke's incredible doctor from Michigan that we miss desperately and she wanted to know how Brooke was doing. As I told her, she confirmed my concerns and advised we should try to call her medical team here to have her seen. As I began calling the numbers we were told to call, I began again to feel lost in a system here as nobody seemed to know anything about Brooke's case or even her doctor when I gave his name. I finally got through to a charge nurse and she said she would try to page Dr. Heczey and within a few minutes he called me back. I was so relieved!!! He advised we take Brooke to the ER for evaluation, possible bolus of fluids and possible x ray of her abdomen to check for any obstruction or other issues (again GREEN is not good with vomiting).




I can write about the lovely ER experience another time (especially the highlight of them missing her port and stabbing her in the chest while she screamed bloody murder streaming tears in the trauma room behind curtain number 2), but for now I will thank everyone for prayers as her tests, bloodwork and x rays were all okay and she got a hand pushed (entirely traumatic) bolus of 370 mL of saline pushed into her port very very quickly in about 4 minutes (while Brooke screamed again as she could taste the saline being hand pushed through the massive syringe in her face into port and jugular and begged the nurse to stop then vomited after the stress while another girl behind curtain number 1 was screaming about getting an IV placed).


During her x Ray the tech with the portable machine asked me to come and look at the image to verify it as right because "Ms. Hester she doesn't have any glitter on her shirt and I just wanted to be sure this was right," as she pointed to the small staples that are all throughout Brooke's abdomen post her life-saving surgery to remove her original massive tumor in April 2011 just before her 4th birthday. Guess she was surprised at the staples...


After demonstrating she could hold down (more) Zofran and a few sips of water, they allowed Brooke to leave just in time too since I really REALLY needed to also feed Benjamin too after 5 hours of being away.




The bottom line is, Brooke entered the ER in pain and after hours of loving prayers poured over her from all over the world, she WALKED A FEW BLOCKS to leave. She has not been sick again either and we pray her pedialite and pretzels she had tonight will stay down. Just before she fell asleep she had me put a heat pack on her lowest backbone as she said it was hurting there and nowhere else.




We don't know what exactly is happening to her, but we PRAY this is all from the CAR T cells at work literally annihilating Neuroblastoma tumors, clusters, single cells... any spec of cancer in her body eradicated and that perhaps her nausea and the GREEN bile is all a part of it since we do know her liver has cancer in it. We pray for her healing and comfort in this war her body is enduring and most especially we pray this is her miracle cure. Thank you for your extra prayers tonight for Brooke and for the love we know only comes from God - even the love we share with one another. Nothing is too big for Him!!
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Comments

14 Comments

Connie Flory
By Connie Flory
This poor, poor baby girl! Just PRAYING for all the best results to happen! Please, Lord, send healing for Brooke!
Melody Keller
By Melody Keller
The amazing strength you and Brooke and the family as a whole posses can come from nowhere else but Above. As I gasp and cringe at what Brooke must endure, I
apologize to The Lord for any complaints of migraines and misc aches. I pray for a
miracle
Sandy Yokeley
By Sandy Yokeley — last edited
Praying for a pain-free day and a day in which she keeps some food and fluids down. Please protect our sweet, brave Brooke and her precious family, Heavenly Father.
Suzy Smith
By Suzy Smith
We love you Brooke. and we pray for the best treatment & quality if life for you as you go through these treatment studies! Glad you are feeling better. Sorry you had a rough few days.
Kate Schwartz
By Kate
What a long and painful ordeal in the ER....so very sorry Brooke went through such an incredibly challenging and horrible time, and so grateful she walked out on her own and that things are looking up. Prayers and faith her pain is the T Cells killing every last neuroblastoma cell.
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Despina M
By Despina M
Praying for you Brooke.. you are a very brave and strong girl!

God bless,
Despina
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Martha Thomases
By Martha Thomases
Oh, sweetie, I am sorry you are having such a tough time. Sending smooches and warm, sweet love,
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marilyn bergagnini
By marilyn bergagnini
Keep fighting sweetheart as those t cells are working killing all those nasty cells....Praying you have a pain_free night and no more vomiting.....God bless you beautiful Brooke and hugs, loves and tons of healing prayers.......
Pat Covington
By Pat Covington
Megan Silver
By Megan Silver
Keep fighting, Baby Girl!!! We are praying and cheering you on every step of the way. We love you!!! <3