For 2023, Evan Cooper and mom Erin share Evan’s story along with treating physician Dr. York, University of MD.

Brother Liam and Evan

Evan, an active young man, age 13, from Rising Sun, Maryland started to have trouble breathing on Monday, July 11, 2022. His mother, Erin, noticed her normally active son was losing his appetite and easily tired.

The following day Evan was playing with his friends and found that he could not keep up. While he did not have any major symptoms (fever, sore throat or external bruising), he felt “off” and again, told his mother.

Erin, at home with her newborn, Wyatt, immediately called the pediatrician. On Wednesday at the appointment, all of Evan’s vitals returned normal, yet Evan continued with no appetite. By Thursday, he woke up with a swollen neck. He was seen by a second pediatrician, who told the family it was likely a virus. Erin insisted on getting an X-ray given that Evan was not improving. In fact, he was having significant trouble breathing.

Following the pediatrician’s visit, Erin took Evan for the radiology appointment right away. Within minutes of leaving that appointment, they received a call from Evan’s pediatrician instructing them to go straight to the Johns Hopkins Emergency Department. The X-ray detected a mass on his windpipe and his airway was compromised. The pediatrician’s office alerted the Hopkins ER that Evan would be arriving shortly. On their way, along with baby Wyatt, Erin pulled over to try to sort through the news they had just heard. There were far more questions than answers.

Upon arrival, Erin, Evan and Wyatt were seen immediately. An oncologist shared with them that Evan had a large tumor that was cancerous. They were told that it was either T-cell lymphoma or T-cell leukemia, but further testing was needed to confirm the exact diagnosis. Erin tried to remain calm, but the room felt like it was spinning. They also learned that the mass was so large that they could not biopsy it until it shrunk. Currently, the tumor was so large it compromised Evan’s airway. The team of oncologists quickly developed a plan for Evan, which would include being admitted to the PICU on the 4th floor and then they would move him to the 11th floor, where the pediatric oncology patients are treated, once the tumor shrunk.

Evan was told that he would start chemotherapy and remain in treatment for at least 2 ½ years. Evan, a rising freshman, was told he could not start his freshman year of high school in person. He would miss too much school, so would have to attend remotely through the school’s home and hospital program. Evan works with tutors and other specialists when he has to miss school due to weekly chemotherapy treatments.

Evan, an avid baseball player, was not ready to learn this news. His treatment would interfere with his two teams, including his travel baseball team. His twin, Liam, younger brother Mason (age 9), baby Wyatt, along with parents Erin and Troy Cooper, did the best they could to support Evan as he, and the family, processed this devastating news.

The family met with Dr. Stacy Cooper, who would oversee Evan’s treatment at Hopkins. Evan was started immediately on steroids in an attempt to shrink the tumor. Evan was finally diagnosed with T-cell Lymphoblastic lymphoma, which is extremely rare. The cancer was also detected in his bones and blood, which is very common in this type of cancer. As a result, Evan receives spinal taps regularly to check the spinal fluid for traces of the cancer.

All four Cooper boys during Christmas 2022

All four Cooper boys during Christmas 2022

The family quickly learned that due to an insurance policy restriction, Evan’s outpatient chemotherapy treatment would not be covered at Johns Hopkins. The family moved Evan’s treatment from Hopkins to the University of Maryland. Under the management of Dr. Teresa York and Dr. Ashley Munchal, Evan continued with chemotherapy.

Since his diagnosis, Even has had numerous hospitals stays and has also developed secondary medical challenges associated with the treatment, including SAIDH Syndrome, a kidney-related disease, and blood clots in his arms from the PICC line, which had to be treated with Lovanox shots to stop the clots from spreading to his lungs. Evan very quickly went from 114 pounds at the start of treatment down to 92 pounds and required a temporary feeding tube that was supposed to last only six weeks. Unfortunately, the NG remained in place over six months later in order to keep medications and added nutrition down as he regularly got sick from his treatments.

Erin was shocked to learn that the chemotherapy options were quite limited and several were in fact adult formulas, just a reduced dosage for pediatric use. This remains one of the realities of pediatric cancer– the treatment options are limited and often cause significant and chronic side effects.

Erin’s persistence with the pediatrician and pushing for an X-ray were no doubt critical in Evan’s speedy diagnosis. Erin knows that had they waited any longer, the outcome could have been very different.

The family remains grateful for the care and treatment Evan has received. Today, the tumor pressing on his windpipe is gone. However, treatment continues to kill the remaining cancer cells in his blood and bones so that the tumor does not grow back. Towards the end of his treatment plan, Evan will be able to go on a chemotherapy pill instead of having the infusions at the clinic.

Update September 2023:

The Cooper family enjoyed a summer together as a family, including a week at Deep Creek Lake, MD, courtesy of Believe in Tomorrow. Erin commented how the best part was that she and her husband were able to watch their kids just be kids again without the effects of chemotherapy and hospital visits. Evan then completed his therapy at Kennedy Krieger Institute and has continued to feel better, gaining back muscle mass, even walking around on his own for short distances. His progress has been amazing and his therapy team was so impressed with his strength and effort at each session.

Because of this progress, Evan’s Oncology team cleared him to attend school in-person this year, something he was very excited about after missing his first year of high school. At the same time, the team did recommend that the chemotherapy regimen resume, as it had been put on hold because of his neuropathy. Unfortunately, it caused pain in his right knee, but the doses needed to continue to effectively treat his cancer. Evan and his family is disappointed that the pain will cause some setback in his physical therapy. However, Evan will still push through intensive therapy at KKI, scheduled for Christmas break and Easter break, and resuming the weekly summer program like this past summer. These plans will provide Evan a good chance of a full recovery. Erin shares that Evan “is such an inspiration to us and our family and friends. His resilience in this fight is truly amazing.”

CCF is cheering for Evan and will check in with him regularly.