Emiliana started having intermittent shortness of breath and pain in her collarbone area in January of 2015. When we took her to pediatrician, he was not concerned and told her to exercise more. Em participated in Fall Cross Country, Swimming, Violin and Spring Track. We blew it off, as it was off season, and she may have pulled a muscle. However, we weren't confident in his diagnosis, so we requested full bloodwork, which came back normal.
Fast forward to March of 2015, Emiliana began complaining more of shoulder pain. At the time, the orthopedic doctor took an xray and diagnosed it as tendonitis. He advised her to stop track and violin, as to not aggravate it further. During our follow up visit, we discussed there was no change and it was getting worse. He recommended going to a Pediatric Orthopaedic to take an MRI. He felt confident they could give a better diagnosis. We were able to get an appointment 3 weeks later. At which time, the doctor took another xray, which looked like the shoulder was dislocated. We then scheduled an Emergency MRI. The next day, the doctor showed me the results, which indicated a tumor growing into the bone and fluid in her lungs. At the time, she was on her inhaler, but not so much it concerned us.
The doctor contacted a colleague at CHOP for further evaluation. We rushed to CHOP leaving Caitlyn with family, thinking we would be home by her birthday on Monday June 22, 2015. Little did we know how wrong we would be.
Emiliana’s cancer started in her upper arm area and spread directly into her lungs. This was the worst case scenario, as she is asthmatic. Her first 3 days in the hospital consisted of numerous tests, and surgeries. Of which was the placement of a chest tube to remove the fluid that had built up in her lungs. When it was all said and done, about (10) 2 liter soda bottles of fluid had been removed. Emiliana spent the first 30 days in the hospital, most of which was in the Pediatric ICU unit. During this time a game plan was laid out on how we were going to attack this disease.
Emiliana fought through (3) 6 week regiments of some of the toughest chemotherapy drugs the oncologist team could throw at this disease. she ingested Doxorubicin, Methotrexate, and Cisplatin. All these drugs carried harsh side effects, for example kidney failure, heart failure, hearing loss, and of course hair loss. If anyone knew Emiliana, she loved her hair and makeup. She would wait every month for her Birchbox to arrive and her frequent trips to Sephora. After the chemotherapy regimen was deemed in effective, we tried the oral chemo drug to try and slow things down a bit. After the scans showed there was more spots, we did the last resort of 12 radiation treatments to try and ease her pain.
We knew we were going to have a rough holiday season in 2015 as we knew she wasn’t going to make it through the Christmas Season.
Emiliana earned her wings after a six month battle with cancer on December 1, 2015. Emiliana’s biggest pet peeve during this was why does breast cancer get all the attention, why is there always pink ribbons, and why doesn’t anyone know about childhood cancer.
Emiliana is the bravest and courageous 13 year old we know, who knows this disease is curable in some cases and is not scared of chemo because "it's just another IV". She never lost HOPE, even in her last moments.
Emiliana’s Hope Story
As you have read during Emiliana's story, that we didnt have enough going on in our lives with Em's diagnosis and fight, we were expecting a new edition to our family. We found out in February that we were expecting. The girls were thrilled and couldn't wait to become big sisters, in Em's case again. They were involved in the planning of the rooms decor, clothes, and the best was registering at Babys R US. They had a blast.
Then we were faced with the dreaded June and the fight our family was headed for, all while my wife was pregnant. I admired my wife for sleeping for weeks at a time on the uncomfortable couches and the endless beeping in the hospital rooms. I know that I couldn't do that. fast forward to September, things with the progression of the disease was not heading where we wanted it to be. We knew that options were thin and the inevitable happened October 1st after the scans results. The disease was winning and we were told that time will be short. We were hoping for the holidays to get through this for her sake. She loved the holidays, spending time with family, friends, and especially her cousins. You could see at Thanksgiving the trend was heading down and she was starting to shut down. Em spent October until the end with her little brother, being the best helper. Em through all of what was going on never lost hope. She knew everything and had input about her treatments. We made a decision to not hide anything and even the doctor's team where behind it, not hiding or sugar coating too much. During all this, Em never lost HOPE, she said upon occassion, that she HOPED she could experience having a baby. This is the most heart breaking thing as a parent, knowing she will never experience child birth, marriage, driving, college, drinking. NOTHING....
On Monday November 30th, was once of the hardest days ever. Em was having trouble breathing, shutting down, and you can just see it in her eyes. We immediately called 911, and i knew this was the last go and our lives would be changed forever as a family. We were rushed to the local hospital and from there my wife and Em had a personal air lift helicopter ride to CHOP. That was the longest car ride I had by myself to endure.
Em recieved her wings a day later on Tuesday December 1st, 2015 at the Children's Hospital of Philadelphia.
Emiliana's Hope is a 501 (c) (3) non- profit, 100 % volunteer driven NJ Based organization. This was created to honor the memory and continue Emiliana's visions. Emiliana's Hope's mission is to improve the lives of pediatric cancer patients with hope, their families comfort on the financial side, while creating awareness of pediatric cancer.
It is disheartening to realize that only $4 out of every $100 in government research funding goes specifically toward childhood cancer research. Emiliana's biggest pet peeve is everyone is all about breast cancer and pink. Why doesn't anyone know about mine and support gold.