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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

pain :(

Sometimes it's just so much to just be able to sit down and write.
My heart is breaking for Brooke... this has been such a long weekend and it's not even over yet.

Her surgery on Thursday was a success.  The surgeon was able to laproscopically remove some small new tumors that had grown in her abdomen.  This was a BIG deal that he could get them safely removed without cutting our baby girl wide open for yet another surgery as the tumors were between the back of her stomach and liver and set on top of a bed of blood vessels.  Thursday's report to us post surgery was great news.

After that it seems to have been a bit downhill for our bubbly Brooke.

PAIN

I can hardly bear it.  She is in pain.  Not just post surgical pain... which seems to be controlled with pain meds, but cancer pain.  First it was her shoulders and neck and right femur, then it was just her right femur, then the back of her pelvis and back of both legs, once it was her ankle, now her right femur again. The intensity of her pains vary from mild to moderate and she has been in bed pretty much all of the time since before her surgery with the exception of a little outing yesterday afternoon to the courtyard of the hospitality house to play in the snow with Benjamin for a few minutes.  She was so happy and carefree in those moments.. I prayed her pain was going away.  But today it seemed more intense.

The perplexing part to me is how it moves around.  How is it that pain from cancer would not remain in one place?  I still wonder in the back of my mind of there is any sort of T cell activity regenerating - thus is the nature of my hopeful heart - but yet my logic tells me it is just the cancer and she hurts in whatever place is hurting the most at the moment as the cancer pushes and grows throughout her tiny skeleton while she waits for some kind of therapy to be able to begin.

Brooke's extraordinary doctor called me from somewhere while she was boarded on a plane about to leave for London.  She wanted to check in on Brooke and we got to chat a little about coming days and plans for her.  She said the genomic testing has grown better than before (it's Brooke's 6th analysis of her cancer) but that because it provides more answers, it also takes longer.  Two weeks...... then a tumor board meeting to determine what drugs could stop her tumor growth... so really three weeks. 

But Brooke cannot wait that long.  Her neuroblastoma is blasting through her body like an uncontrollable wildfire and who knows how much worse she has already progressed in the week and a half of no therapy since her scans.  But there are good signs - very good signs in fact.  When Brooke left Houston her VMA tumor marker was 109 (normal is 9 or less).  By the time we got here to Michigan it was down to 45.  Her liver AST markers had peaked at 250 and were down to 160 (normal is 40 or less).  Both of these markers were still abnormally high, but declining.  We are hoping they will test them again next week because the plan is Brooke will start therapy on Monday based on her previous individualized therapy prior to the GD2-CAR T cell trial in Houston, and we are hopeful it will stop her cancer once more and change her course back on a path to a cure.  Her bone marrow is weaker than it has been in a long time with Brooke needing not just platelets twice a week, but also now red blood once a week.  Monday will be a very early to very late day... starting at 8:30am and likely ending in a hospitalization short stay just to get it all done as she most likely will need blood and platelets on top of therapy to stop the cancer that is causing pains to move about her body.  

Brooke chooses to be strong.  She cries.  We talk to her.  She stops crying. We PRAY. She hurts.  We comfort her.  She rests.  She cries.  We cry.  It hurts so bad to know there isn't much else we can do for her beyond what we are doing now.  Above and beyond her pain medication, she finds relief in long hot showers and a heated relaxing soft pet made for warm comfort.  The warmth feels good to her and it doesn't take much.  We rub down her hurting areas with essential oils that she finds soothing and relaxing but that also have strong anti-cancer effects.   She is on a few of her oral drugs that are anti cancer still, but it probably just isn't enough to stop all of the pathways needed to be stopped - hence the pains moving about her body.  

We know there are no answers to Brooke's irregular cells that are growing and hurting her body.  We are so grateful for Dr. Sholler and her team to take Brooke in yet again, to try and solve the puzzle our daughter's cancer poses.  We hope the tumor samples as well as the bone marrow samples will provide new hopeful answers to shutting down her neuroblastoma once and for all.  Her marrow has never been analyzed and yet this is where her hardest battle has been so we are praying the samples will be good enough to be able to be analyzed and targeted and that her doctor's brilliant heart and mind will be led to the best medicine for Brooke now and in coming weeks when her new results are in.  

Thank you for continuing to pray for Brooke and our family.  Beau has to leave for home in the morning, and we are so blessed that Gary and Perri are helping to get him home with Perri's incredibly generous donation of standby status to Beau from her own American Airlines flights as part of her retirement.  Benjamin, Brooke and I are blessed to have Pappaw here with us now through mid-December to spend time with him as he is here to help as needed while Grammie stays home and heals.  We have hearts of gratitude for this and so much more... we don't know how we could make this work for Brooke without support and God works many miracles in our lives as my computer calendar turns over yet another day in her 4 year and (now) 5 day nonstop battle against cancer.

 Please keep praying for our baby, she is such an amazing little girl.  Truly remarkable, inspiring, strong and caring - despite it all.  Brooke you are my hero.

Thank you to those who have asked us about helping out our family.  Without help we know our lives would be so much different and Brooke's battle may not have as many options as it has. Her old personal website has a link if you would like to help in her medical and travel expenses at www.BrookeFightsBack.org or just to send a little note of love and prayer in the mail to her anytime would be so wonderful.  If you send to our home address it can be forwarded to Brooke wherever we are.  We don't yet know when we will be home but it may not be until next year.... all we can do it take it one day, one smile, one tear, one day, sometimes one hour at a time.




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Comments

26 Comments

Gaylene Meeson
By Gaylene and Hannsh xxx
I am so sorry to read your post, sending you lots of love and prayers xx
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1 person hearted this
Laura Bolen
By Laura in Delaware
Praying and hoping peace and most of all, Brooke's cure, finds it's way to you soon
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1 person hearted this
Luljeta Ismaili
By Luljeta Ismaili
Jessica, it breaks my heart to hear that sweet Brooke is in pain and how hard it is as a parent to watch your kid suffer. You are always in my thoughts and prayers 🙏
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1 person hearted this
Kate Schwartz
By Kate
So very sorry your sweet girl is going through SUCH a difficult road. Our hearts and prayers are with her as she battles this pain and waits for the next treatment. Praying for strength, wisdom, and healing.
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Jake Jacobi
By Mr. Jake
I too am praying that our soldier, our hero, and our best friend Brooke will find good results very soon.
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Terri Lenger
By Terri Lenger
"The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness!" Lamentations 3:22-23
Brooke- we keep praying for a miracle and are never without hope. Thanks for showing us all how to love God and love your family, no matter what! You are such an INSPIRATION! God bless you all with His Peace and Presence...
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Vicki Lodden
By Your Michigan Friend, Vicki
Praying for God's healing hand to relieve Brooke's pain, and annihilate her cancer. My prayers of comfort for all <3
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Sue Schulte
By Sue Cameron Schulte
Praying
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Suzy Smith
By Suzy Smith
Sweetheart we are always praying for our precious angel, and for you & Beau. No parent should have to watch their child go through this & no child should have to go through this either! Hugs & kisses, love & prayers to y'all!
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Bob Schulte
By Bob Schulte
Praying
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