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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!


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Latest Journal Update

Rough Week

Brooke has really struggled this week. Monday brought new hope with therapy based on combinations of previous genomic profiling of her cancer. With it has come multiple phone calls in precious hours of the day between the insurance, the pharmacy, the doctor, the nurse, and myself all trying dilligently to advocate and get the insurance to re-appove two of the oral pills Brooke has taken many times before (Sorafenib and Vorinostat) but not in combination with this chemo (Oxiliplatin). Her doctor does not want Brooke's counts to plummet too far so that she can begin the new therapy hopefully with results of the genomics arriving post scans in early December. Brooke received the IV chemo on Monday and if all goes well with UPS and FedEx drivers then she should (after w long day of adamant advocacy conversations begging for compassion) get her other oral pills in the mail tomorrow on $200 of copay and not be over $20,000 out of pocket for a month's worth of a handful of pills for Brooke. Such outrageous prices and processes but thankfully all expedited and approved!

Brooke on the other hand has not been so well. It has been so hard to see her like this with expanding pain daily and especially in her legs as Sunday, Monday and most of today she has been bed ridden and quite restless with pain. Although it has been fairly controllable with round the clock pain meds, once they wear off in her sleep, or on an empty stomach, she just cries and limps her way to the restroom when she needs to go. On a Monday, Dr. Sholler told us she set up a consult with Dr. Buth, whom Brooke knows all too well - the radiation oncologist. The last time we saw him was the month after Benjamin was born when Brooke had cancer progression last August, over a year ago. When it was nearly 3pm today I got Brooke dressed (she couldn't do it herself) and we took small steps to walk over to see Dr. Buth for the consult. He advised radiation to her lower femurs above the knees at the progressive areas and also to her upper humerus, near her shoulders. Since this week is Thanksgiving, he wants to set up for simulation tomorrow afternoon where Brooke will get her permanent black tattoo freckles and body cast made, then next week have a short but very intense 5 days of radiation to the 4 painful sites to hopefully alleviate pain and eradicate some of the Neuroblastoma. Fortunately the vorinostat drug is conveniently also a radiosensitizing agent meaning it can help make cancer cells more sensitive to radiation, and so we hope it will work well with the radiation therapy (RT) next week to really help her out.

Radiation is such a hard hard decision. But it is also so awful to see Brooke in pain. Dr. Buth uses state of the art RT equipment and precision calculations to target intensely only exactly where it is needed so as to spare healthy tissue somewhat, but still, it is radiation. More radiation on our baby girl, but in all new areas of her body never before exposed (with the exception of MIBG whole body/blood radiation in 2012). Most likely the doctor will dedicate some of his holiday time with his own family to calculate it all out of compassion for Brooke and it means so much that he cares for her to do this. So much to be thankful for...

But here is what is also amazing. As we were getting ready to leave the consult appointment which lasted until after 5pm, Brooke who had been staring endlessly at her mustard seed of FAITH necklace from Mr. Lathrop... suddenly started talking more. During her long days of pain she just stares off mostly. She doesn't want to read books, play games, paint, watch movies, or even talk. She's just wanted to sleep and take hot showers to ease the pain (although her eating has been moderately okay and ever since the surgeon took out that new lymph node tumor by her stomach, she has had less nausea and vomiting). But there we were in the exam room and Brooke started chatting with the doctor.

Now I know she likes him. He is very intelligent and Brooke enjoys adults that talk to her like she is a little adult. She appreciates interesting intellectual conversation and also she appreciates Dr. Buth for helping her in the past as well, so at first maybe I thought she was just being more chipper with him because she likes him as her doctor. After all she was still lying on the exam table all curled with knees to her chest laying on her right side to avoid laying on her left leg that has now been hurting her the most.

But then the exam ended and it was time to go and I got her coat and scarf and mittens and warm hat all back on her zipped up her colorful bundle and braced myself to lower her to the floor without hurting her legs.

She stood up without flinching.

We walked back across the street the way we came and although she was limping she wasn't crying like she did on the way there. She even asked if we could walk outside the long way around the hospital and I had to remind her we had to promptly get back indoors since the Oxiliplatinum has serious cold restrictions and it was about 28 degrees outside and snowing. But SHE asked! She talked to me the whole way back through the hospital corridors, her usual chatty self. She was limping still but not in as much pain, and certainly her disposition was better. My mind wondered could the chemo be working so fast already?? But her doctor had told me it would be a few days more before it would work..

Then we got back to our one room family room where Pappaw and Benjamin were waiting on our return and Brooke wanted to play with Benjamin. Just hours prior he had been bringing her one book after another and she kept turning him away telling him she hurt too much to play or read to him. Then she rushed ahead of me to go run him a bubble bath when she heard me tell him it was time for bath and she put in his toys (and the duck she painted him before her surgery - which BTW I had not seen her touch again since she gave it to him before her surgery), then after hanging out and being silly during his bath she snuck out as I was drying him off and picked out his pajamas and laid them out on the bed very nearly where I have his little diaper changing area. Talk about back to the normal super sweet fun Brooke all of a sudden!! 💛 Now although this could have all been her pain medicine keeping pain away, it was certainly hopeful to see her like this right on up until bedtime. So much to pray for and thank God for and HOPE for each and every day. I pray for a restful night for her and for her to wake up singing and pain free. We feel so blessed to be able to have the opportunity for our child to be here where there are so many people that directly care for her and work so amazingly as a team to seek cures for kids battling cancer. FAITH! LOVE! HOPE!
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22 Comentarios

Shyla Patera
By Shyla Patera
How beautiful ! Happy Thanksgiving!! Here's to hope and more miracles!
Susan Salewski
By Susan Salewski
Keeping Brooke in my prayers.
Sandy Daron
By Sandy Daron

Your precious Brooke. It breaks my heart that she is in soo much pain. I pray for a miracle of pain relief and for the chemo to BEAT back the BAD cells.

HAPPY Thanksgiving to your precious family.

I'm Thankful for You
Thanksgiving is the appointed time
for focusing on the good in our lives.
In each of our days,
we can find small blessings,
but too often we overlook them,
choosing instead to spend our time
paying attention to problems.
We give our energy
to those who cause us trouble
instead of those who bring peace.
Starting now,
let's be on the lookout
for the bits of pleasure in each hour,
and appreciate the people who
bring love and light to everyone
who is blessed to know them.
You are one of those people.
On Thanksgiving,
I'm thankful for you.
Happy Thanksgiving!
By Joanna Fuchs

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
Email: sandy@colesfoundation.com
Billie Maderer Heiser
By Billie Maderer Heiser
Love comes your way.
Mary Angel
By Mary Angel
I don't know why I never seem to get your updates in my e-mail anymore so have gone to the CaringBridge website to catch up on what has been going on with Brooke this past week or so. Praying that pain has subsided some and that she is till feeling better like she did yesterday. My eyes fill with tears when I read your posts. I ask the Lord why does she have to go thru so much when you can lay your healing hands on her and make her well. Praying that you all will have many blessings as we celebrate Thanksgiving tomorrow and mainly that Brooke will be pain free. I know it has to be hard to be away from home and not have you all together. Praying for all to go well with the radiation and that it will knock out those cancer cell. God Bless you all.
Sending hugs from San Antonio
Rosann Horist
By Rosann Horist
I am so happy for her, can this also be that she is very smart and see's that there is hope for her, that this doctor is going to help take away the pain, I am hoping it is a little of both, kids are very smart. She is always in my prayers, I hope your family has a happy and peaceful thanksgiving. Love to you all
jennifer schaefgen
By jennifer schaefgen
Bill Lathrop Jr
We are praying for you every day! Jessica & Beau we are praying for y'all too.
Matthew 17:20- He (Jesus) replied, "Because you have so little faith. Truly I tell you if you have faith as small as a mustard seed, you can say to this mountain, Move from here to there, and it will move. Nothing will be impossible for you."

My faith grows because of Brooke, Jessica and Beau's belief in God's promises.
marcia douma
By marcia douma
As we thank our Lord this Thanksgiving we will thank Him for Brooke and her dear family...Praying that God will bless you with many more Thanksgiving together......PRAYERS
Grammie Moore
By Grammie Moore
No doubts Jesus is with her giving her reassurance all is good and taking her childlike fears! Building her Faith and letting her know "Nothing will be impossible for her" thank you dear Lord for hearing our prayers!