Emiliana started having intermittent shortness of breath and pain in her collarbone in January 2015. When we took her to pediatrician, he was not concerned and told her to exercise more. Since Em participated in Fall Cross Country, Swimming, Violin and Spring Trac, we blew it off, as it was off season, and she may have pulled a muscle. However, we weren't confident in this diagnosis, so we requested full bloodwork, which came back normal.
Fast forward to March of 2015, Emiliana began complaining more of shoulder pain, saying it 'felt like there is a weight on my shoulder'. At the time, the orthopedic doctor took an xray and diagnosed it as tendonitis. He advised her to stop gym, track and violin, 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 scheduled an Emergency MRI. The next day, the doctor showed us the results, which indicated a tumor growing into the bone and tumors in her lungs.
The pediatric orthopedic 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. Little did we know how wrong we would be.
Emiliana’s cancer started in her upper right arm and spread directly into her lungs. We were later told because she is asthmatic, it would be difficult to treat, but we all held hope she would overdome this disease. Her first 3 days in the hospital consisted of numerous tests, and surgeries. They inserted a chest tube to remove the fluid that had built up in her lungs, and a port for the chemo. Approx. (10) 2 liter soda bottles of fluid had been removed from her lungs thru the chest tube. The PET scan indicated tumors were also in both of her knees, her left arm, her ribs, and her hip. Emiliana spent her first 30 days in the hospital, in the Pediatric ICU unit - I wrote daily goals to maintain HOPE that we would be going home soon!
Emiliana was informed about everything the doctors told us, they looked to her for her input and answered her honestly. We made a decision to not hide anything from her. Even though the doctors were brutally honest, Emiliana still held HOPE, that she would be cured, either by a miracle or by the clinical trials.
When she was diagnosed, Em told us 'I'm not scared, Mommy, its just another IV." As a parent, we will always regret not finding it sooner, and wanting to take away her pain, but Em wouldnt hear it. She told us she didnt want any of us be in pain or sick, she wanted it to be her.
Emiliana fought through (3) 6 week regiments of some of the toughest chemotherapy drugs the oncologist team could throw at this disease, which included Doxorubicin, Methotrexate, and Cisplatin. All of these drugs carry harsh side effects, such as kidney failure, heart failure, hearing loss, and of course hair loss. We knew this would be disheartening to Emiliana - those that knew her, knew 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 were more spots, the last resort was 12 radiation treatments to try and ease her pain. All of which occurred the week before and after Connor was born.
We knewit was going to be a rough holiday season, and toward the end, we knew she wasn’t going to make it to her favorite holiday, Christmas.
Emiliana earned her wings after a six month battle on December 1, 2015.
Emiliana’s biggest pet peeve was there minimal funding and awareness for pediatric cancer. We hope to change that.
Emiliana is the bravest and courageous 13 year old we know. She never lost HOPE, even in her last moments.
The Story Behind Emiliana’s Hope
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 addition to our family. We found out in February that we were expecting our third child. The girls were thrilled and couldn't wait to become big sisters. They were involved in the planning of the room's decor, clothes, and the best memories are of registering at Babies R US. They had a blast.
In June, we were faced with the dreaded 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.
Emilian's 3rd PET scan on Oct 1, foretold our worst nightmare. The disease was spreading that time would be short. She loved the holidays, spending time with family, friends, and especially her cousins. You could see at Thanksgiving the trend was heading downward and she was starting to shut down. Em was able to spend her last 7 weeks with her sister and newborn brother. Even though she rarely felt well, she still tried to help the family as much as possible.
During all this, Em never lost HOPE, she said upon occassion, that she HOPED she could experience having a baby, and would name her HOPE. This is the most heart breaking thing as a parent, knowing she will never experience child birth, marriage, driving, college, NOTHING....
On Monday November 30th, was one of our hardest days. Em was having trouble breathing, her body was about to completely shut down, we could see it in her eyes. We immediately called 911, knew this was the last time we would be home with her 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 helicopter ride to CHOP. That was the longest car ride I had to endure by myself.
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 and generosity toward others. Emiliana's Hope's mission is to improve the lives of pediatric cancer patients with hope,and their families comfort, while creating awareness of pediatric cancer.
Let's Go GOLD FOR A CURE