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
For updates go to :
https://www.facebook.com/A-page-for-Ciara-and-updates-1851876795098095/?pnref=story
All of your prayers, support, help and love are so greatly appreciated.
