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.
After the 4th cycle Emily would develop mucositis which would cause a fever and require a day or two at the hospital. Emily completed all 6 cycles.
After she was home, she started complaining of headaches but nothing major. We mentioned it to the doctors but chemo can cause headaches, so they weren’t overly concerned. About 2 weeks after she finished treatment she got a PET scan. We were told the cancer was gone and she was done. It didn’t feel real. I heard them saying she was done but in my heart I knew we weren’t.
THE RELAPSE
A couple days later on October 9th, 2022 Emily spiked a fever which landed her back in the er. She had been complaining of headaches for a couple weeks and I noticed her one looked squinty, so they did a head CT and that is when they discovered the cancer had spread to her brain. It took a couple days to come up with a treatment plan as this was rare. In fact, they based her treatment plan off of a couple other studies that were just like hers. When I asked how many they said 2. 2 documented cases like hers is what we followed. The treatment plan worked for the other 2 so that is what we did. She would get high dose chemo followed by a stem cell transplant followed by radiation. Her new treatment planned included lumbar punctures(LP) weekly where they injected an immunotherapy directly into her spine. The first couple were absolutely terrifying for me. What if the needle went wrong, what if she had a reaction, could she be paralyzed. So many fears go through your head when venturing into the unknown. Her chemo got stronger and she now spent 3-4 weeks in the hospital with a week home for count recovery. Then she came back for 1 more week of high dose chemo and then got another week at home. During her home time she did not need an LP. After the first round she went to CHOP for 3 days to have her stem cells harvested. It was an interesting process. Apheresis is where they cycle the blood to remove the stem cells. They cycled through her blood volume 7 times and it took about 4 hours. She had 2 tubes inserted in her neck. One removed the blood, it ran through the machine, then through a heater to warm the blood back up before returning it into the body. There was always a tech in the room to keep track of her calcium level because it could drop. Luckily, they were able to retrieve all they needed in the first try. Some kids take a couple days to get all that they need.
After 2 rounds they said it was working and they were going to up the LP injections to twice a week to really kick this thing. She got 4 rounds total of this chemo. During this time she maxed out a couple chemos that can no longer be used as your body can only tolerate so much I was told. During this time Emily received a lot of blood and platelet transfusions. We got lucky she was able to be home for Christmas. The nurses and doctors at Lehigh Valley Reilly Children’s Hospital became family. Emily spent so much time there and they were so good to her. They will always be angels in my heart for how they took care or her on a medical, emotional and physical level. They really are special people!
The next step in her journey was a Stem Cell Transplant. She had to get multiple testing done beforehand to make sure her body could handle it. The original tumor in her chest damaged the nerve that controls her diaphragm leaving the left side stuck up. This was a major concern so testing her lungs was important. The morning we were to leave Emily woke up with a stomach bug that pushed everything back a week. The following week were at CHOP ready to go. For Stem Cell Transplant they start at day -7. The first day is really getting settled in and starting the steroids. After that the chemo started. It was very heavy duty chemo as the goal is to kill every cell in her body. The first week went pretty well. After that she caught the rotavirus and was not allowed out of her room. She also got pneumonia. Her blood pressure would be high then low. One night we had a room full of people almost all night just keeping track of her blood pressure. Luckily, she never had to be transferred to the PICU. She got her Stem Cells on March 27th, her 2nd Birthday they called it. She also got a NG tube inserted. It is standard for transplant patients. Unfortunately, later that day she threw the tube up so left her go without it. After a couple weeks living on lipids and fluids they reinserted the NG tube. This time Emily was able to keep it down even when she was sick. This helped her go home. I got a crash course in tube insertion and operating the pump for feeds. Emily spent 45 days at CHOP. They did a clap out when she left. All the available staff lined the hallway to clap as she walked out, rang the chime, and added a star to board of transplant kids.
The first week at home was a little hard. Not being able to leave her room left her weak. Stairs were difficult. Getting up and down from the bed and sofa were difficult. The bath was extremely difficult but day by day she got stronger. She started to eat and drink more. About 3 weeks after coming home Emily removed the NG tube by herself. I was so glad I didn’t have to do it. We gave her rides around the neighborhood in her wheelchair. She would start off walking and then as she got tired she would sit. The goal was to get a little farther than the day before and she did most days.
4 weeks after she got home she started radiation. I was so scared for radiation but after spending 2 weeks at home I realized I was more afraid of the cancer returning and less afraid of radiation. They decided to do full brain radiation with a slightly high concentration where the cancer was. Because it was full brain she was able to get it done at Lehigh Valley. She was so brave allowing them to make the mask and bolt her head to the table so she could get radiation. She received 12 doses of radiation which took about 10 minutes total. Most of that time was setting her up on the table.
Emily will get final scans at the end of summer. If everything is clear she will finally get to ring the bell.
UPDATE: Emily got to Ring the Bell October 6th!!! Since then she has returned to school full time. She will in 8th grade this year. She got to be part of the school play and compete a solo dance this past year as well. Treatment has left her left side weak and painful at times so she does physical therapy twice a week in hopes that she will regain full strength and all the pain will go away one day. Treatment has also left her with restrictive lung disease and asthma. Luckily it is controlled well with inhalers. She continues to get brain scans every couple makes to make sure the cancer stays away.
Emily got to be part of LVH Reilly's Children Hospital's advertisement. She has appeared on billboards and trans bridge buses. We are hoping to collect over 1000 squishmallows this year for kids with cancer. We have been working hard to raise awareness. St. Baldricks is amazing for all the money they raise for cancer research.
