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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

what IS a miracle?

I found myself wondering today, what is the exact definition of a miracle.  I mean we all know the word and what it means, but I wanted to know what Webster says and I found this simple definition: A miracle is an event not explicable by natural or scientific laws.


Not explicable.


Something explicable is able to be accounted for or understood. 


At the beginning of Brooke's diagnosis, I cried so much and asked God over and over and over again why… why… why?  My heart was torn, smashed and shattered to smithereens as I seemed to look past the blood dripping from her IV into her body to what appeared to be blood smeared and dripping down the hospital wall from where my heart had been ripped from my chest while it was still beating and slammed to the wall before crashing to the floor. My child was quite painfully dying of cancer at age three and a half and all I could cry out was WHY.  I buried my face in my hands and sobbed for her life.


It didn't take long into heavy prayer for her battle for me to I realize that there was too much I would never understand; that I was never meant to understand.  Rather, I was to seek peace that surpasses understanding from the only source it can come from - our heavenly father.  


I pray for peace.

I pray for strength.  


I do not pray for the inexplicable.  


There is no reason for me to understand. 


Life is full of suffering we will never understand.  Life is full of pain and heartache and cruelty and misery but that is really and truly only a small part of life.  Life is abundant with joy and peace and happiness and laughter and comfort and compassion and so much more –all of which are gifts granted when we seek them.  When we leave this earth for eternity we will have no pain.  We will have only peace.  We will have all the understanding we need. In Brooke’s battle, we have first-hand witnessed many, many obstacles.  We have seen her abound and overcome things that should have taken her life.  We have heard doctors who have no explanations other than the power of prayer and the mighty hand of God in her life and give Him all the glory.  But we have also had naysayers who point out that Brooke is still battling cancer and thus has not received her miracle of remission.  


No, Brooke is not in remission. 


Yes, Brooke has seen miracles; many miracles.


She has experienced the inexplicable - unable to be accounted for by anyone other than our awesome God and the healing hands of his son and the Holy Spirit that surrounds her.  Brooke is exactly two months away - today - from turning 8 years old.  She was diagnosed with stage IV aggressive cancer at age three and a half.  She has had many friends she has known in her battle already gone to be with Jesus (although she doesn’t know it nor has she asked).  To her, they are still at their temporary home with their families here on earth rather than at their permanent home in eternity.  Some day, I am sure she will ask and then she will know, but not until God is ready to reveal that to her.  Brooke knows however, that her battle is fierce and that it could take her life from her. She is incredibly smart and knows intricate details about cellular and body function and life and she knows what she feels when she hurts more than we could ever know, and yet she somehow stays so strong and resilient. 


Children are so resilient – I hear that all the time. 


Yes... they are, but they are also very, very innocent and fragile and when they have cancer they endure a different level of harshness in therapy because of the unknown. We read side effects for her and sign papers for her and prepare her for whatever we can, but when it comes down to it, cancer therapy takes a terrific toll on a child’s body much differently than an adult.  Brooke’s size 6 clothes hang on her tiny frame.  I see other children her age, or even sometimes have sent her sweet care packages that arrive for her in size 7 or 8 clothing and I am reminded how very tiny she really is for her age and I put away the clothes in a box in hopes she will grow into them. 


But she is certainly not just a big kid trapped in a five-year-old-sized body.... she is more like an adult!  Brooke's maturity is so beyond her years and her own peace surpasses the peace I feel when I pray for it for myself.  Her turmoil comes when she is hurting which is beyond heartbreaking and we are grateful when she is able to have pain management through medication. 


Right now, she isn’t on any pain medication AT ALL.


A week ago, she was.  She was hurting intensely. 


She had a massive cholesteotoma growing and oozing deep inside in her left ear with bacteria festering and stealing away any small bit of white cells she had as it eroded away parts of her inner ear.  God miraculously opened a door from one day to the next for Dr. Joseph Taylor to remove that from her ear surgically exposing a severely perforated ear drum and damaged hearing parts of the inner ear.  Yesterday at follow up with the ENT, he removed a large dried up clot of post surgical blood from her ear canal and now she can hear a constant whooshing and buzzing sound in her ear.  We continue to pray her ear will heal and that the cholesteotoma will not return in a rage.


Brooke’s stem cells are going CRAZY in her marrow producing white blood cells to boost her immunity and we are so grateful and hopeful her platelet production and red blood cell production is next.  Her appetite is still minimal and we hope that will continue to improve as well. 


Last week, the doctors had to pull us in for a private meeting.  They explained to us that if Brooke did not engraft, that she may not be able to have any further treatment. 


This week FIVE different physicians have hugged my neck in response to Brooke’s ongoing engraftment response in her marrow and have looked me square in the eye telling me this is nothing short of a miracle. 


I don’t think they expected her engraftment to work… or at least they were pretty unsure if it would.


But they took the chance!!


Her spine and pelvis and femurs are full of cancer – the exact bone marrow needed the most to engraft, and yet somehow her small body has still allowed her other bones and bone marrow to make room for myleocytes to flourish and crank out white cells of immunity.  She has had severe chest pain, rib bone pain, top of foot pain, side/hip/pelvic pain, back pain, leg pain, neck pain, headaches likely from skull pain…she has had moving pains all over her body that began to fade until by 3 days ago, she didn’t need the hydrocodone and heat packs for pain any more.  Her WBC at last check had risen to over three thousand with an ANC immunity score of 2,200. 


Brooke has been neutropenic since her course of therapy began after we left the T-cell trial in Houston and she had so badly progressed and the Michigan team had to work to stop it.   That means that sometime mid-November through late February (this week) she had ZERO immunity.


The lack of immunity made fungus grow inside her lungs and liver and a few spots on her skin. It kept her plain old common cold ear infection so severe that her eustacian tube stopped draining and created a vaccum to her left ear drum literally sucking it in to rip open and collapse upon itself and caused skin and infection to grow deep inside her ear canal and outer brain tissue as it festered and brewed and stole what little immunity she was producing.  Her body was not in a good place as the infection and heavy antibiotics caused her to have nausea and diarrhea issues that stole her electrolytes compounded with a possible long term Fanconi syndrome kidney issue that makes her lose her phosphorus from the years of platinum based chemo she has had.   


Brooke has experienced another miracle.


She still has much ahead of her however.


Next Monday, she will have a head, chest and abdomen CT evaluating her ear, lungs and liver. Then on Wednesday an interventional radiologist is generously giving up his office time to come and do an urgent procedure on Brooke to attempt to biopsy her liver, which will not happen until mid-morning.  She will have to have several platelet transfusions during days prior to the surgery for her safety and risk of bleeding.  That morning of surgery, she will not be able to eat before anesthesia, and then post surgery will have to lie flat for several hours to make sure she has no bleeding from her liver which will be quite angry from the biopsy.  But the biopsy brings SO much HOPE.  The biopsy will give the doctor another chance to analyze her cancer and do molecular guided therapy for Brooke – now hopefully with stronger marrow than she has ever been able to see with Brooke since she never began targeted therapy until May 2012 AFTER she had already endured strong ICE chemo and MIBG whole body blood radiation which destroyed her marrow.  The results of the biopsy will not take weeks, but DAYS, and hopefully by the following Monday there will be a plan in place for Brooke!


In the meantime, we wait and hope and pray for her full engraftment to continue and for her body to start making red blood and especially, platelets.


Brooke is not being sent home next week on palliative care or hospice. 


Instead, her marrow has begun to engraft her own ROCKSTAR stem cells from when she was three and a half years old and we hope and pray it will make her marrow strong again so that now, Brooke can not only have individualized, targeted therapy, but be able to tolerate a strong enough regimen to destroy her Neuroblastoma and finally give her the gift of remission. 


In the meantime, we lavish in her smile and our hearts are broken for our friends who are not getting such hopeful news for their child right now. 


I saw a daddy of a child we know in clinic yesterday and when I asked how things were going he couldn’t speak.  He could only look down, or look away, to keep the tears from streaming down his cheeks.


Cancer and childhood should never have to be spoken in the same sentence, nor should the words hospice and child. But they are. I don’t know what that sweet baby faces right now or what that family is having to do, but I know I felt pain in the father’s eyes - in my friend's eyes.  I could feel what I knew I felt in my own broken heart last week when the doctors brought me in to that meeting to explain this was a critical possibility for Brooke should she not engraft. 


My heart celebrated in the moment for my child as her white counts soar and her body is pain free and at the same time my heart shattered as I looked at the father with the warmed heat pack in his hands on his way to take it to his hurting child and I know I never ever want to stop fighting childhood cancer. 


No matter if cancer overcomes Brooke or leaves her body forever, I will not stop fighting for hope and cures to be found for children – for their miracles of life to occur.  For birthdays, graduations, celebrations, weddings, and rejoicing in each gift from God no matter how big or small, I will always find a way to keep fighting for the lives of children. There is no excuse for cancer to be the number one disease killer of our kids when there is HOPE to be found and there is research that is happening and that God is no doubt revealing answers through just like with the first discovery of penicillin and vaccinations to cure other diseases. 


I strongly believe that when our surgeons, doctors, medical researchers and genomic scientists are doing what they do with the humility and guidance of our heavenly father over their hearts and hands, that they open doors for miracles and will and do find inexplicable answers and cures.  It does take funding and strong advocacy to make that happen, and that is where I believe God needs me to continue to focus.  To share my voice, my faith - even my writing - if somehow it can help others, to know that He is in control and that is all that really matters if we believe and turn our eyes to His as we lift our babies on the altar just like Abraham and Issac.  We must turn to him and know and trust His plan no matter how painful or how much we don’t understand and we must take the time to pray. 


God will always listen and hear our hearts and pour love upon us… he will heal us either in this life or in eternity.  This temporary life is a short journey on our path to that eternal peace and for that, I am beyond grateful and I hope that somehow my life is a reflection to my children to do and feel the same relationship with their heavenly father that I have been blessed to have in this life.


Thank you for your love and prayers and the hope and faith you have for Brooke and her miracles as the sun sets tonight and rises in the morning with God's love surrounding us all.


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Comments

39 Comments

Susan Salewski
By Susan Salewski
So happy that you can do a little celebrating. Brooke IS a miracle? Continued prayers for sweet Brooke.
emily welk
By Emily Welk
Praying every day for sweet Brooke!
Lynnett Jankuski
By Devin/Lynnett Jankuski
Always praying for Brooke's miracle & her sweet family. Sending love to you all. God Bless,
Becky Pulley
By Becky Pulley
continuing to pray for Brooke AND working hard to spread the word about childhood cancer and raise funds for a cure
Nigel Burrell
By Nigel Burrell
Childhood Cancer is a vileness that needs to be excised from the entire world... As ever I am holding Brooke The Brave and Beautiful in my prayers for healing and happiness. She is a constant inspiration to so many. Thinking of you all from the U.K.

Nigel xxx
Sarah Gouzoules
By Sarah Gouzoules
Sending lot's of prayers for Brooke. Brooke is a miracle. Hugs!! Sarah C.O.L.E'S Prayer Team www.colesfoundation.org
Kellie Lavallier
By Kellie L
My heart is happy hearing this wonderful news. I will keep praying for Brooke, for your family and for God to give you peace and strength. God bless, Kellie
Anita Turner
By
So happy to read this good news, sending positive thoughts for continued improvement with her blood cell, and that Brooke continues to feel good and remain pain free. Happy days!
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Louann Hunt
By Louann Hunt
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Despina M
By Despina M
Always praying for Brooke and your entire family. Praise God for He is great.

God bless and be with you always.
Despina
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