Love for Ciara
Dearest family, friends and well-wishers,
First let us extend our thanks to everyone for all of the love and support that has been shown to our family during this difficult time. Now more than ever we will need you all.
It all began a few weeks ago when beautiful 9 year old Ciara began to complain of headaches. The normal type of headaches that were relieved with over the counter children’s Motrin. Then on Christmas day she had what appeared to be a lazy eye. Ciara knew something was wrong with her eye but was unable to fix it. The very next day the lazy eye got worse and now her vision was effected. Ciara was also now complaining of a bad headache. Ciara was then taken to the Emergency Room at Wentworth Douglass Hospital in Dover. WDH performed a cat scan and told the Family that it was perhaps "nerves" and they scheduled a follow up appointment with Ciara's Primary Care Physician in Portsmouth at 4pm the following day. On the next day they received a phone call at 1pm, hours before the scheduled appointment, the PCP's office called and said that the Doctor had a chance to look at the scan and he "found something". He instructed mom Stacie and Ciara's Dad, Harold, to immediately bring their little girl up to Dartmouth-Hitchcock in Lebanon, NH.
At Dartmouth-Hitchcock they performed multiple MRIs and Ciara was terminally diagnosed with a malignant brain tumor called a DIPG. DIPG - Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
DIPG affects children almost exclusively. Approximately 200-400 children in the United States are diagnosed with DIPG each year. These children are typically between the ages of 4 and 11. DIPG accounts for roughly 10-15% of all brain tumors in children.
DIPG is an aggressive tumor that interferes with all bodily functions, depriving a child of the ability to move, to communicate, and even to eat and drink.
As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death.
On Friday 12/30/16 one of Ciara's Doctor's believed that he could reach enough of the tumor to perform a hot biopsy that may allow them to provide some sort of treatment to prolong Ciara's life, but Mom & Dad were told to prepare for the worst. The results of the biopsy are expected to come back in 10-12 days.
On 12/31 Ciara was allowed to go back to her home in Portsmouth where she was met by her brother, her sister, her parents, her many cousins, Aunts & Uncles and Grandparents too, and together they celebrated New Year's Eve. The guest of honor, Ciara was smiling for the first time in days and was talking and making jokes with her big crazy family. She was in great spirits and if it weren’t for the bandages wrapped around her head, you wouldn’t be able to tell that all is not well with our ray of sunshine looking at her beautiful smile.
The purpose of this fund in no particular order is:
- Create as much joy as possible for Ciara for as long as time allows
- Help parents offset the cost of missed work(Harold will be shutting down his business for the time being to be with Ciara) while spending as much time with their little girl as they can
- Medical bills
If anyone would like to send cards, care packages or private donations for Ciara please send to :
Ciara Brill (Harold Brill)
P.O. Box 571
Portsmouth, NH 03802
We will update as we receive results
All of your prayers, support, help and love are so greatly appreciated.
Clinical trial CED-8H9 needs approval to help children with DIPG
Ciara has completed her first week of a 6 week course of radiation. She is feeling well so far and is in good spirits. When her radiation is complete we need to get her into a clinical study to hopefully get rid of this tumor. The study we need to get her into is at Memorial Sloan Kettering Cancer Center located in NYC. As of right now they are awaiting on approval from the FDA to continue with this study. They have been doing this trial already and have been having success. We need everyone who read this to please call the FDA and ask for them to approve the extension for CED-8H9.
Please call 888-463-6332
This can help Ciara and many other children with DIPG.
Thank you all so much for all of the continued love and support.
Ciara Brill (Harold Brill)
P.O. Box 571
Portsmouth, NH 03802
Ciara will start radiation therapy at Dana Farber today.
Thank you all for your love and generosity during these difficult times.
Please continue to keep Ciara in your prayers.
Ciara is my granddaughter. She is the kindest, sweetest young lady. To say this isn't fair, for such a young, beautiful child to have to deal with this, can't even compare to what she is going thru. To those of you that are donating, please know that I am beyond thankful. Beyond gracious. I can't even try to explain how truly thankful I am, for each and every one of you. People are good, and kind. Thank you. God bless you all. My friends, my family and people we don't even know. Thank you all, from the bottom of my heart.
Please reach out to Jonathan Agin on facebook. His daughter also suffered with DIPG. https://www.facebook.com/jonathan.agin.9 He will have lots of information for you about DIPG and is actively involved in policy and raising funds to get better treatments. Best of luck. In my prayers. XXX
Please reach out to the National Brain Tumor Society braintumor.org They have researchers that they fund and can provide information. I am meeting with Jeanne Shaheen's office on Monday to ensure the STAR act gets passed by the Senate. Pediatric research as you know is poorly funded. My heart goes out to you all.
We own a ranch in the Texas panhandle! We would love to have y'all come and help work cattle and ride horses, we have a perfect little pony called Pumba she can ride hours on!!! We have plenty of room in our house!! Love and prayers!!! You can contact me if you wish at brookecarter43@gmail
My son had a brain tumor when he was 5. There is an organization called Friends of Jaclyn that pairs kids who are battling cancer or brain tumors with college sport teams who provide love, support and friendship. We could find Ciara a team and the girls could be a great support to her. PM me if you are interested. It has been invalauable for my son.
I am so GRATEFUL for the outcome of love and support for beautiful Ciara and her AMAZINGLY STRONG family!!! The comments and donations keep pouring in which will help immensely!!! Please keep sending positive comments and prayers as they keep US all going. It truly helps reading all of your thoughts!! God Bless you all who have found it in your heart to donate. It warms my heart to see even the smallest of donations as it shows how big your hearts are!!! Love and health to you all!!
Again, Ciara is my beautiful granddaughter. I'm here to thank you all, each and every one of you for your donations, and your prayers, you are all so thoughtful and kind! We can't thank you enough. This world is so kind! Thank you, thank you, thank you! Together, we're going to fight this! Ciara is going to fight this cancer off with our help! She's too good and kind and she's needed here on this earth!
I do not have money..no not even a dollar. Something I have learned from watching true men and women of God preach is YOU have the power to cast this sickness and disease out In THE NAME OF JESUS!! 2000 years ago we were already healed and made whole. So IN THE MIGHTY NAME OF JESUS I COMMAND THAT CANCER TO GET OUT OF HER. GET OUT IN THE NAME OF JESUS!! LAY YOUR HANDS ON HER AND CAST IT OUT!! Everyday no matter what. Declare and decree she is well she is whole because of the word. By Faith not by sight!! I am praying for you Brill family!! We are in a spiritual war. Jesus already won!!
A little girl in my church community was diagnosed with the same tumor around 18months old. She is something like six years old now, and thriving. She still has the tumor, and she still struggles, and her parents will never truly know how much time they will have with her, but she is SURVIVING. Their secret? Cannabis oil. Fed to her with cheerios on a daily regimine. I urge you to look into this treatment, if it is a legal option where you live. It's controversial, but canabis is amazing stuff that can practically work miracles if you are willing to try it!
My heart breaks for your gorgeous family. I can't imagine how terrible this is for you. There is a brain surgeon in Australia who is beyond incredible in this area. Dr Charlie Teo - if anyone can help you - he can. I include a link abt him. https://www.curebraincancer.org.au/page/58/charlie-teo I pray that he, or someone can help save your beautiful little girl. Danielle
Ella Wolff, My name is Harold Brill and I am Ciaras Dad. What you are doing is absolutely the sweetest and most thoughtful thing ever. I would like to purchase some bracelets from you myself. Can you please ask your parents to look me up and Facebook and reach out to me so I can get some information. You are a very special person with a very big heart and Ciara and the rest of her family are so greatfull for you amd everyone else that is helping Ciara in any way possible.
Everyday my company JW Consulting works hard and travels the world looking for answers to help cure cancer .With every case and every trail we learn . We work hard to save lives like yours Ciara . Stay strong baby girl . My prayers are with you Stacy and family