This is Cecily. She is a smart, caring, vivacious 6 yr. old who loves her family and friends, and is passionate about life. Her bright spirited and caring personality have made an impression on all who know her, both her many friends, church family, parents, grandparents, aunts and uncles.
In June 2016, she began to complain of pain in her left shoulder, arm and neck. Activities that she enjoyed such as swimming, gymnastics and cartwheels made her hurt and were no longer fun or doable. Initially the DR.’s that she was seeing locally assumed she had fallen and broken a bone. She had many X-rays done, but they were unable to provide the family with any answers. They advised to give her advil and see if it would get better. The pain was worsening causing her to not sleep at night, so she went back to the Dr. A CT scan was performed and based on those images, concern prompted the Dr. to advise them to see a specialist in NYC. Upon bringing her to NYC, they were informed that Cecily had a destructive lesion growing inside the bone of her left clavicle. Breathtaking and heart-wrenching words like cancer became a potential reality. They began what would become many back and forth trips to Morgan Stanley Children’s Hospital in NYC where she underwent countless lab draws, numerous X-rays, CT-scans, MRI’s and bone scans.
An open bone biopsy was performed within the month that resulted as non-specific, but helpful to exclude diseases like Langerhans cell Histiocytosis X, benign or malignant bone tumors. She was then placed on a 3-month course of strong antibiotic treatment as a preventative incase the biopsy showed bacterial disease.
Almost a year had passed and she continued to guard her arm and complain of pain, regardless of being on anti-inflammatory treatment with NSAIDS. Still uncertain about what was happening inside her body, they requested a second opinion.
She is now receiving care from the Children’s Hospital of Philadelphia, where they are performing more tests, procedures and treatments.
They have diagnosed this disease process as a form of non-bacterial Osteomyletis .
What is Happening Now
In July of 2017, after additional MRI’s were taken, the family was informed that the destructive lesion had grown in size, and it has become necessary to change to a more aggressive course of treatment.
Every other week for the next year she will receive injections of her new medication, Humira, in hopes of suppressing her body from attacking itself. This medication has many concerns; one being that it will compromise her immune system making her more susceptible to illness or disease. Her Rheumatologist informed them that due to swelling and enlargement of her clavicle she is also at high risk for fracture and dislocation of her clavicle. As a result Cecily is restricted from participating in any contact sports or activities that could potentially compromise her bone.
How can you help?
The unexpected nature of this has been a strain financially on Jon and Heather as they were not prepared for the many back and forth trips to NYC (3.5 hr trip) and Philadelphia (4hr trip), piles of co-pays, traveling expenses, surgery, medications and bills that have had them pay an estimated $3,000. On top of what they have already paid, they have bills of about $3,000 owed to hospitals in NYC. As they continue to travel, and accumulate bills for treatment and care they are currently receiving, the financial burden is growing.
Anything you can give will relieve this current burden and then help them pay for continued travel and medical expenses they will need to cover over this next year as Cecily gets the treatment she will need.
A Personal Note from the Family
For well over a year now, we have watched Cecily as this disease began to invade her active young body. At first it was thought to be something very treatable, but since that time we have been brought into the reality of the unknown, being something of an enigma to the many doctors who have examined her. They have of course made the best assessment they can, and we believe they are pursuing the right and best course. Jon and Heather have made many trips to the Children’s Hospital in NYC and not having success there, have gone to Philadelphia. Jon and Heather never asked for anything from anyone, not even their parents. They have quietly and sometimes painfully paid bill after bill to care for their daughter. The bills are mounting up, and becoming overwhelming, and have the potential to really set them back even more as future treatments are prescribed as well as long trips to Philly. That is why we as her family are looking to start this program, to help in any way we can to gather friends, family and fellow believers in Christ to help with their medical expenses. When you are going through a health crisis with a loved one, one of the things that can add extra burden is the heavy financial toll that it takes. If this can be alleviated or reduced, we believe that it can make a big difference.
Through it all, Cecily has been so cooperative and so very brave! Even at her worst she continues to light the world up with her infectious smile.