×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Brooke with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

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

Promising News!

Hello everyone... we have some news from Brooke's doctor to share, but the thing is,we don't know exactly what it all means... yet.

But, here is what we know right now:

When research is funded, miracles CAN happen.  The research Brooke hasbenefitted from over the years has been:

Fall 2010 COG trial (COG and PARENT LED FOUNDATION FUNDING SUPPORT)

Summer 2011 Irino/Temo therapy

Fall 2011 Irino/Temo/Avastin trial (not sure how this was funded)

Fall 2011 Hu3F8 trial (PARENT LED FOUNDATION FUNDED)

Spring 2012 ICE therapy

Spring 2012 MIBG therapy trial (not sure how this was funded)

Summer/ Fall 2012 Molecular Guided therapy trial 1,2 (PARENT LED FOUNDATION FUNDING)

Spring/ Summer 2013 Molecular Guided therapy trial 3,4 (PARENT LED FOUNDATION FUNDING)

Fall 2013 DFMO trial (PARENT LED FOUNDATION FUNDING)

Spring/ Summer 2014 Molecular Guided therapy trial 5 (PARENT LED FOUNDATION FUNDING)

Fall 2014 CAR T Cell Trial (PARENT LED FOUNDATION FUNDING)

Just LOOK at that list. 

MOST of the research Brooke has personally benefited from has been clinical research trials funding in part or FULLY by parent led foundations, INCLUDING Brooke's own foundation support to some of these trials. This list could be much more comprehensive and list all of the foundations behind these trials,and all of the parents and more importantly, the individual children that have fought cancer so bravely leading the way to pay for these trials that otherwise WOULD NOT HAVE EXISTED as options for Brooke if not for PARENT LED FOUNDATION FUNDING. Brooke’s path would be very, very different if this funding effort among foundations did not exist.

There are 3 key points here:

1.    God opens many doors through compassion.

2.    Miracles can and do happen when doors are opened.

3.    Research leading to cures is not free and requires funding.

We know Brooke has experienced many miracles in her battle with stage IV cancer over the years, and we believe with all of our hearts may be in the midst of another incredible miracle thanks to PARENT LED FOUNDATION FUNDING for the trial she is currently on.

The Texas Children’s Cell and Gene Therapy team took samples of her blood last December.  We were in Michigan at the time and they were overnighted to Houston.  Her immunity had not been that high at the time with her therapy and we weren’t sure if there would be enough white cells for them to work with. Then the researchers isolated T cells from those blood samples.  By February of this year, they requested more, so we sent in a few more vials of Brooke’s blood. Brooke’s T cells were isolated from the samples and frozen: ALIVE but frozen (which amazes us).

Because of strict FDA requirements, it took a long time before Brooke was next on the waiting list.  Before Brooke, the researchers would thaw the patients frozen T cells, modify them to have a special GD2 antibody inside to make them sensitive to seeing the Neuroblastoma cancer whereas, before, the natural T cells did not see the cancer as a threat to the body.  Then when the patient came, they would thaw the cells, and inject them into the patient. 

They discovered this was not working well. With CD19 CAR T cell therapies they like to see expansion or modified Tcell multiplication happening in the body after they are infused into the patient.  With the frozen cells they were followingpatients labs and seeing results like “10” of expansion happening, which is alow number.

They decided to change the plan and had to then wait on the FDA to re-approve the new“recipe” and they decided to instead of make the CAR T cells then freeze them,that they would make them and two weeks later when the batch was all ready,they would inject them directly into the patient… BUT before they would do this they would give the patient a low dose of chemo to knock back his or her own natural T cells which would hopefully allow the T cells to expand.


Brooke was originally going to be the first child to ever have this done – but she wasn’t.  As many of our prayer warriors who follow her blog will recall, Brooke was almost ineligible for this trial. She was receiving hefty doses of steroid with every platelet transfusion and the doctors quickly informed us that steroids KILL T cells.  Brooke was even on these steroids back when her blood sample was taken and shipped off last December and again in February to derive T cells from her blood.  She had been on steroids for over a year to keep her body from having a bad anaphylactic (suffocation) reaction to platelet transfusions.  The Texas CH team had basically said they were sorry for us she could not qualify. This did not sit well with us and we prayed heavily and decided to allow a few safe options to be tried with Brooke and lo and behold, they were successful. Brooke was able to demonstrate that she could have platelet transfusions safely without reactions when given a regiment of oral Tylenol, IV Benadryl and IV Zantac – no steroids required. 

During the time Brooke was passed by, another child was the first to try the new regiment for this trial.  The child went through the lymphodepletion chemo and fresh (not frozen) CAR T cells, and the doctors were thrilled when she had a small fever and expansion was seen into the hundreds!  This was great and hopefulnews for the child.  The week Brooke finally did get to begin the trial here, the other child’s scans came back stable. 

The day Brooke got her CAR T cells, a few hours later she developed high fevers that lasted for days.  Her heart rate was soaring.  The inflammatory markers theywatch for in her blood were high (Ferritin, LDH and her CRP or C ReactiveProtein even went up to 28 which is a marker they watch for a Cytokine stormwhen T cells get busy attacking something foreign in the body).

The doctor called us today to tell us the first patients expanded around 10, then with added lymphodepletion (killing off the body’s natural T cell defenses temporarily) and fresh CAR T cells, expansion jumped into the hundreds.  With other types of cancer that has had successful CD 19 generically modified T cells, expansion is in the thousands,or even ten-thousands.

His exact words were “Brooke is 100 fold that” and he told us Brooke’s blood work (as of yesterday) shows her CAR T cells have expanded to 20,000.

THIS IS A VERY GOOD SIGN in her body. 

With T cell therapy, they first look for cytokine storm or a response similar (but perhaps even more intense) to what Brooke experienced with her fevers and heart rate although Brooke had NO pain.  Next, they look for some signs of expansion or multiplication of the new T cells inside the body.  Brooke’s expansion isoff the charts.  Then, they watch forother clinical signs like pains or problems in the body, but ultimately thiscomes down to scans.  Brooke still has 4more weeks until her scans. 

Yep..4 more weeks before we will know.

We are PRAYING the new CAR T cells in her body are not only expanding and growing, but that they will be more than capable and eager to hunt and destroy any and all Neuroblastoma cancer cells lurking in her body and bone marrow.  We HOPE and PRAY that this is Brooke’smiracle.  We don’t know why Brooke’s CART cells are expanding like this when another child’s did not other than Brookehas a larger disease burden to start with and weaker bone marrow when they didthe lymphodepletion which brought her to rock bottom (again). 

In FOUR more weeks, if her scans come back with clear improvement which we BELIEVE they may, she might be eligible for another batch of CAR T cells to be made fresh (not frozen) and delivered into her body but without the added lymphodepletion – BUT this would all be up to the FDA if it gets to that point.  We have so SO SO much HOPE and we appreciate all of the continued prayers being lifted for Brooke and her medical team at this time.

If this is Brooke’s miracle, it can do nothing but lead to more miracles for more children as the researchers learn more about the nature of childhood cancer, which behaves so differently than adult cancers. 

To put it into the words of one of Brooke’s favorite pastors from Sunday morning television, Joel Osteen:

"The scripture says in Philippians 1:6, 'He that began a good work in you will continue to perform until it’s complete.' The good news is that you’re not a finished product.  God is still working on YOU."

Brooke... we believe God is still working on YOU and we continue to pray for your miracle!  

Thank you to friends and family who have sent Brooke little notes and gifts in the mail (SHE LOVES MAIL) and for the anonymous grocery and gas cards for our family at this time.  We feel so blessed and full of faith that God has led Brooke once again exactly to where he needs her to be.  We continue to pray as well for her counts recovery as her body and bone marrow are still suffering from some long term late effects and we pray her bone marrow will recover and that her blood and platelet dependencies will dwindle.  She is such a strong little girl with such a big heart and we hope that God will continue to use Brooke’s life and our lives to positively impact others around us in her battle.  Please also keep Brooke’s friend Bailey in your prayers as her news was not so good this week. There are so manychildren fighting and we continue to focus our prayers on God’s mercy and goodness in their lives and stay on our hands and knees in gratitude and hopefor our little Brooke too.

To learn a little more science behind CAR T cell immunotherapy, you can visit this site: http://www.cancer.gov/cancertopics/research-updates/2013/CAR-T-Cells

Please keep praying with us!! 

heart
159 people hearted this

Comments

31 Comments

Becky Pulley
By Becky Pulley
To God be the Glory ~ great things he hath done especially for this precious child. We continue to prayer and we also Believe
Danielle Jensen
By Danielle Jensen
I am praying to the heavens that this is Brooke's miracle. What an incredibly beautiful wonderful child you have!!!!!!!!!!
karen martin
By karen martin
I pray this pretty girl beats cancer an never has a another worry again God bless ya all
Candyce McCann
By Candyce McCann, from Leesburg, VA
This is such incredible news. I am in awe of the parent-led foundations, including Brooke's, who have led the way in this and other research. I am so excited for Brooke, and will continue to pray for all of you. May God bless your family, and God love that precious, sweet girl.
Mary Angel
By Mary Angel
Jessica,
Wonderful news. Praying for continued healing. God is still there protecting Brooke and I know he has big plans for her on down the road. She is such an awesome little girl. God Bless you all. Have a wonderful Sunday.Sending Hugs from San Antonio.
Pat DeCap
By Pat DeCap
Praise God!!
Kate Schwartz
By Kate Schwartz
Wow! What exciting and promising news!! We are praying for this miracle for your sweet Brooke!
Linda Beimers
By Linda Beimers
Thank you so much for the great update. Brooke I have a lot of my friends who do not have computers praying for you and your family. May God hold you all close in His arms of love.........
Nigel Burrell
By Nigel Burrell
This is GREAT!!! Go Brooke! :o) Praying that this is indeed a sign that Brooke is on the way to finally defeating her NB. Healing vibes and best wishes sent out her way from the U.K. - have a blessed weekend!

Nigel xxx
A L
By A
I didn't understand everything but what I was able to tell was that it is good news! Can't wait to hear about the good news in 4 weeks because I know Brooke can do it!