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 5 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 5 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!
To learn more about Brooke's foundation, please visit
or find her on facebook at
life love hope... scans
23 hours agoLife is in constant motion.... Constantly moving forward... Constantly going, growing, changing and moments are instantly transformed to memories the second they occur. Even when you have an incredible appreciation for life, stopping to take time to smell the flowers is still life in motion. It's just the nature of life.
This week is hard. There is no way around it. We need Jesus more and more every day and that is so wonderful to know He is there. We also need prayers. But even with the ebb and flow of prayer need in our lives, it's hard to explain not just how critical they are but how incredibly powerful prayer has been for us.
Saturday night Brooke had a blast! We were treated to a lovely dinner at the Bleu Bistro in Corpus Christi with the amazing Barbara Canales Black who has spent weeks planning and preparing her incredibly sweet idea of a joint fundraiser for her foundation in honor of her survivor warrior Jackie ~ The Ready or Not Foundation ~ and Brooke's Blossoming Hope. ICE CREAM! She asked Brooke what flavor she liked and Brooke said "pink... with cherries" and just like that now she is selling not only Mint Chocolate Chip to support the Ready or Not Foundation, but also Brooke's Cherry Blossom Pink Ice Cream, at her lovely restaurant downtown. We hope many people will stop by to try it and enjoy literally the CREAMIEST ice cream we have ever tasted in our lives. This was all very very special for Brooke as she is usually as sugar free as possible with her reduced kidney functions and cancer, so what a delight it was for her to be so spoiled by such a good friend AND in support of the cause we know needs every penny it can get - the battle against childhood cancer.
Sunday we spent at home just enjoying time together as a family. I didn't have much packing to do since last trip her clothes were already washed and repacked by daddy before they came home, so her bag of warm winter clothes for Michigan was ready to go. We enjoyed watching football and Brooke fell asleep in my lap as I stroked the fragments of fuzzy hair that remain on her head from this 5th hair loss. I have noticed some new regrowth in the bald patches so this warms my heart with hope it will get to keep growing this time.
Oh we have such hope...
So many of you that follow consistently probably understand this best, but Brooke is not in remission. She has never reached remission. Since the day of her diagnosis on November 18, 2010, she has not stopped fighting with the help of drugs, radiation and surgeries along the way. But still... she is so strong you would not know from the outside (other than that patchy head of hair beneath her blossoms) that the scan before last beamed not only most of the old spots in her bones and lymph nodes, but new nodes and a large new spot in her spine as well. Right in the middle of her back... growing... preparing to paralyze her. But this was radiated and treated with her genomically targeted oral pills and chemo, and it knocked her counts down so far that she came home and had NO therapy several weeks then went back for scans. Those scans showed stable disease. Then she came back home on this new compassionate use drug called DFMO which has been promising in the lab against Neuroblastoma and we had the best quality of life since her diagnosis.
As I type this, it is 9:31 in Texas and 10:31 in Michigan and she is now in her first set of scans this trip. She and Beau made it safely through DFW international's icy scene, and on to Grand Rapids' snow piling up rapidly. SAFELY. Praise God. Yesterday she got her radioactive injection and today she will lie still for no less than an hour and a half and be scanned by MIBG and a CT that equals thousands of doses of simple x-ray radiation that are lifetime accumulative. Every 4-6 weeks for over three years she has gotten those CT scans which put her at high risk for long term late effects of that radiation - more cancer - in addition to the radioactive isotope they put into her bloodstream to view on MIBG. But this is the only option we have for her life. These scans give the doctors and researchers what they need to determine how to treat Brooke. Thank goodness they found the spot growing and advancing in her skull before it grew into her brain! Thank the Lord they found the new spot in her spine before it caused her a single moment of pain or worse, paralysis. Thank goodness they have these scans that are certainly high risk, but with the risk greater of the cancer, we are grateful to them.
My stomach gets sick every time she scans. Knots... Aches... Nausea.... I know it's "Scanxiety" for her life. I pray continually for them to to be clear, but we know this is in God's hands and in His time, and yet we never stop hoping. We know her urine markers went down before this scan, so we hope this is a good indicator that the DFMO is working.
Tomorrow Brooke will have an additional scan called a PET scan. The MIBG will attach to and highlight any Neuroblastoma cells in Brooke's body in clusters of about 400 cells or more. Anything less is too small to see, even with the best current technology. The PET scan will determine how active that Neuroblastoma is. We have seen Brooke's cancer go dormant or benign in the past, so if her MIBG scan is not clear or NED (No Evidence of Disease), the next best thing is a clear PET scan.
Then tomorrow afternoon, Beau will meet with Dr. Sholler, and hopefully I will get to be on speaker phone with them as results are delivered. I believe also tomorrow Brooke may have her blood collected for the Autologus T Cell study with the 3rd Generation GD2 Chimeric Antibody so that a T Cell army may be grown for her in the lab over the winter and injected back into her in the spring. In the meantime.... we pray for clear, reduced or at least stable cancer in her body. Her marrow is just still so weak with weekly platelet transfusions still needed and nearly once a month blood transfusions. We continually pray for her healing and thank you for yours.
Yesterday was a special day for Brooke both in Texas and in Michigan. In Texas, the Corpus Christi ISD Superintendent's Leadership team gathered for a second annual Christmas blossom making party and this time brought in every single campus administrator from throughout the district. It was our largest blossom making party to date. I was blessed to be able to go and say thank you on behalf of Brooke to the room full of loving smiles and colorful blossoms AND it was so great to see the men using glue guns too! I was peeking over their shoulders and let me tell you they were making some beautiful blossoms!!!!!!!! Meanwhile, in Michigan, a group of talented high school vocalists came for their annual volunteerism to sing Christmas Carols to children at the Hospital, and after meeting Brooke last year during her progression and 5 day radiation just before Christmas, Brooke had seen them and shared a few awareness blossoms with them. This year they had asked well in advance and wanted awareness blossoms to wear for their performance this year. So as Brooke was walking from the Renucci Hospitality House to the Children's Hospital with her daddy, it was in God's perfect timing that they were scheduled to sing down in the lobby at that exact passing. Brooke got to not only hear this amazing group of talented young people sing Christmas songs again, but she got to see they ALL were wearing blossoms for her (the boys wore them as boutineers and the girls wore them in their hair). Then they sang her favorite fun Christmas song to her.... Rudolph the Red Nosed Reindeer!!!! SHE LOVED IT!
It's amazing really how flowers bring smiles to hospitals, especially the kind that kids can wear.... and especially for kids with no hair.
We are blessed to be able to continue to give forward the love of the Lord in this way to children who need it desperately in their challenging circumstances, and to know the immediate impact these blossoms, hats and headbands can have in their lives. But we are also keen to the critical importance of research and funding.
TODAY (the vote is this afternoon) there is a chance that 12 million federal dollars from an old presidential campaign fund COULD go to pediatric cancer. We have written a letter of our strong support for this legislation, the Gabriella Miller Kids First Research Act of 2013 (H.R. 2019) and hope and pray these actions will not be ignored by our local congressman. We encourage you too to reach out to your congressman today in favor of this. Some day we hope Brooke's Foundation will raise millions of dollars to continue helping kids directly but also to continue funding critical pediatric cancer research that will lead to cures for them. We know the T-Cell trial we are hoping for Brooke to get on in the spring was funded by a parent led foundation. We know the trial Brooke is on now with the DFMO has been funded by parent led foundations. We know the trial Brooke was on with the molecular guided therapy was funded by parent led foundations, including Brooke's Blossoms, and we know the Hu3F8 trial she did in NYC was funded by the Band of Parents. If facts and figures don't appeal to you, perhaps these facts will. The reason kids are surviving right now is BECAUSE of foundations, like Brooke's Blossoming Hope and others that are helping to make the researchers ideas into real clinical trials for kids to be posted on the ClinicalTrials.gov website when our government is inadequately funding them at less than 4% of the total budget of the National Institute of Health. We KNOW kids are surviving better because families and communities believe this is unacceptable or for less than a penny on the dollar to go toward "restricted research" of kids fighting cancer through our local cancer societies. We KNOW our local group has taken action to honor Brooke in the spring and has found a way for us to allocate those funds raised in her name specifically toward Neuroblastoma and we KNOW this is not the norm for the organization. But we also KNOW people who read, follow, love, hope and pray for our children fighting DO care and will continue to be the driving force for a better tomorrow for kids with cancer.... kids like Brooke who never give up, never stop smiling, and never lose hope.
You can find YOUR congressman here: http://www.house.gov/
Also, anyone can become a Citizen Co-sponsor of Gabriella Miller Kids First Research Act by signing up at http://majorityleader.gov/makinglifework/kids-first-research-act/.
Thank you for your continued love and prayers and we will post as soon as we know more about her scans this week.
With Everlasting Hope,
Libro de visitas
Guestbook signed 15 times today
We read all entries daily! In fact we look forward to it & often check more than once. We also read Brooke's to her...
Brooke's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.