30 DAYS/30 STORIES® 2022
Emily was a happy, healthy 11 year old. She loves school, choir, participating in school play, soccer, and dance. She dances competitively and assists teaching the younger girls’ classes. When she started complaining of shoulder pain, we assumed it was from dance and had her massage her shoulder with a foam roller and pinky ball. A couple weeks later we attended a funeral for 2 angels, one of whom was Emily’s classmate. Emily ended up passing out. She was checked out by EMT’s, and they said everything looked good and it was probably dehydration and the stress of the funeral. Over the next week or so she kept getting dizzy spells. She said everything would start to turn black so she would sit down until she felt better. Our pediatrician ran blood work and determined that she had a strep infection and treated her with antibiotics. She also recommended an EKG and cardiologist visit just to be on the safe side. The cardiologist said everything looked fine and some kids get syncope through their adolescent years. A week or so later, her shoulder pain started waking her at night so we made an appointment with a pediatric orthopedic. He did an xray and saw the mass in her chest. After talking with her pediatrician and cardiologist, it was determined she should be admitted for more tests. We went home to pack for a day and then came back. Little did we know it was the beginning of a long journey for our family.
The 1st test was CT scan. When the doctor told me she had cancer, time stopped. It definitely took a couple of minutes to sink in. Never would I imagine my healthy child could have cancer. Telling her was one of the hardest things I have ever had to do. We cried and cried. She called her siblings and friends to tell them. She was really worried about losing her hair. Her hair was so long, and she hated to even get a trim. I told her we can get wigs and hats and we will figure it out. From here on out, we would live one day at a time. We also adopting the saying “We are Strong, we are Brave, we will get through this together.” I wanted Emily to know she was not alone, and we would get through this together.
After it was determined to be cancer, she was transferred to Children’s Hospital of Philadelphia in our first ever ambulance ride. She was admitted to the PICU. First thing they did was a biopsy to determine what kind of cancer she had. She also got a PICC line in her arm. The tumor in her chest was so big that it was pushing on her airway and closed 2 valves to her heart so she could not get a Port. They also were not able to put her to sleep for the biopsy because of this so they put her in a twilight stage which meant she was awake when they took her back. She screamed on the way back because I couldn’t be with her. It broke my heart.
Emily was diagnosed with Primary Mediastinal Large B-Cell Lymphoma. I remember the first thing the doctor said was that it was treatable. That was a big weight lifted. They had a treatment plan. She is on a 21-day cycle with 5 days of constant chemo in the hospital followed by 2 weeks at home. She will complete 6 cycles. They started steroids and chemo immediately. By the next day, they were able to hear breath sounds on her left side. After 4 days in the PICU, she was moved to a regular room. A bone marrow and spinal biopsy confirmed she did not have cancer in her bones. She got an MRI and a pet scan when she finished chemo. It showed that she had a spinal compression fracture from the cancer. They didn’t feel like she needed a brace because she had no pain and the location was surrounded by the ribs.
The first round of chemo was brutal. She was very sick. She spent most of her days sleeping or throwing up. I think part of it was all the fasting she had to do for all the testing. The anesthesia also made her very sick. Every procedure, she would wake up throwing up. After 9 days at CHOP, she got to go home. She was sick twice on the 1 ½ hour drive home. She had to get daily Neupogin shots which made her bones hurt. She looked like a baby deer when walking up the steps. A couple days later, we drove an hour to King of Prussia CHOP for bloodwork where she got sick as soon as we got there. The car was no longer her friend.
We moved all her treatments to Lehigh Valley Reilly Children’s Hospital. Second cycle of chemo went much better. She was only sick a couple days not the whole week. They also switched her to a Fulphila shot with Claritin which is a single shot does and does not cause as much bone pain. After the 2nd cycle, a pet scan showed the tumors are shrinking so the chemo is working. They were able to put in a port before her 3rd cycle of chemo. After the 3rd cycle, she developed mouth sores and mouth pain but luckily that only lasted about 4 days.
She is currently on her 4th cycle, so we are getting there. She now has a soft back brace to wear when she is up and about for a while. It helps support her back, so it doesn’t hurt. She goes to clinic twice a week to check her blood levels. She is happy she can enjoy swimming this summer since getting the port in. She loves the water. She is happy for Facetime as it lets her connect with her family and friends when she in the hospital and not feeling the best. We are looking forward to her being in remission. She is hoping she can dance this year as it is her 10th year. She is looking forward to going back to school in the fall after her chemo is complete.
Written by Emily’s mom, Adele
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip
Photo by Mercedes Lynn Escoto-Wagner.