May 12, 2016 Latest post:
Mar 26, 2018
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.Our family is overwhelmed with the outpouring of love and support.
It all started with a bit of itching…
Ella was itching. Normally this would not be really a big deal in our home because Jen works in Dermatology. We treated Ella with various creams, ointments, and anti-histamines, which helped for about a week; but then her condition seemed to worsen. She was scratching throughout the day and night, so much so that she scratched until she bled. Our intuition said, “Something is just not right.”
Ella was born with a mole behind her ear and it was slowly getting larger. Prior to the onset of the itching we had decided to have Jen remove it at her office (thankfully,it came back benign.) Since Ella's itching had not improved, we ordered labs that same day (April 18, 2016). We were concerned her kidneys were not filtering the daily medication she took for her congenital kidney reflux (a condition her doctors discovered when she was eight weeks old). She had been doing really well from that standpoint but we knew something could have changed.
When the results came back, to our surprise, her liver function enzymes were high. Hmmmm! After some reading, we wondered if this was a result of the daily antibiotic taken for the kidney reflux. Our pediatrician, Dr. Anne Cata, ordered some additional labs to rule out other viral disease processes, all of which came back negative. The next step was a GI specialist consult at Dayton Children’s but there was quite a wait. Dr. Cata decided she wanted to take a look at Ella in the meantime.
On Thursday, April 28, we took Ella to see Dr. Cata. Upon assessment, Dr. Cata determined that Ella’s liver was enlarged and ordered new labs. The following day, we received word Ella’s liver enzymes were worse and she needed an ultrasound of her liver. An ultrasound of her biliary tract was done at the Children’s testing center on Dayton-Xenia Rd. in Beavercreek, Ohio. We were very fortunate to have an ultrasound tech that was both thorough and compassionate. We noticed she was taking many measurements and we definitely saw something odd. That oddity was a 5 cm mass and it was difficult to determine the location, so the tech asked us to hang around until the radiologist could talk to our pediatrician.
After speaking to the radiologist, Dr. Cata asked us to come to her office so she could go over Ella’s results in person. It was supposed to be her day off.
She then sent us directly to Dayton Children's where their cancer team met us for a CT scan of her abdomen. The next morning, Saturday, April 30, an MRI/MRCP was completed and it was determined Ella needed further work up. A battery of tests, labs, and studies were performed at Dayton Children’s. That same afternoon, due to the location and intricacy of Ella's mass, we were transferred to Cincinnati Children's.
A great team of doctors and nurses began caring for Ella upon our arrival. After much coordination with multiple teams of specialists, on May 3rd, Ella had an ERCP where they were able to get a few biopsies and place a stent to help her biliary system drain appropriately. The mass was not allowing that to happen making bile salts back up and caused her itching. The original biopsies were not adequate, so on Friday May 6th she had another ERCP but this time it was an ultrasound guided needle aspiration biopsy. On Saturday May 7th, 2016 we received official confirmation: our daughter has Rhabdomyosarcoma of the biliary tract.
Stage I (T1b NO MO)
Although inoperable due to location, it is treatable. Her PET Scan showed no signs of metastasis or large lymph node involvement.
Now we embark on a new journey. Ella’s current plan includes fourteen, 21-day cycles of chemotherapy with radiation and a potential for surgeries down the road. We are numb, profoundly sad and still in complete disbelief. We are hopeful because we have been told 8 out of 10 children with Ella’s staging will be completely cured.
We are lifted up by each of your caring calls, cards, letters, texts, gifts, meals, hugs, tears and prayers.
We honestly have no idea what the future will hold but we all know Ella is feisty! (Now we know why!)
“Though she be but little, she is fierce” William Shakespeare, from A Midsummer Night’s Dream