2024 Honored Patient: Damon
In the summer of 2022, just after Damon’s 6th birthday, he started to experience strange flu-like symptoms. The symptoms seemed to come and go, so he continued doing all his favorite summer activities: riding his bike, swimming in the lake, playing outside with friends, and attending camps. However, after a few weeks of this puzzling illness Damon’s parents took him to the pediatrician.
At that visit, Damon appeared healthy, and his lab work came back normal. Other tests were scheduled to investigate the cause, but nothing was conclusive. Then, when Damon began to complain of severe headaches in the back of his head, the pediatrician recommended he be taken immediately to the ER at Children’s Minnesota. A CT scan showed a large tumor in Damon’s brain. It was a total shock for his parents. What they thought would be an overly cautious trip to the ER turned into a life-saving and extensive hospital stay. Damon’s family knew that something was going on with him physically, but they never could have imagined what was really happening.
Damon’s parents didn’t have time to settle into the shock. They immediately met with the neurology team who devised a plan for his care. The next day, Damon was scheduled for surgery to place an external shunt to relieve the pressure on his brain. They also met with the rehabilitation team right away. Physical, occupational, and speech therapists played games with Damon to establish his baseline—something not standard protocol in many pediatric facilities but is considered best practice. This allowed the care team to form a plan for recovery after surgery. Many of the therapists conducting Damon’s initial assessment still work with him today. From the very beginning they formed a close relationship with Damon’s family and have been by their side through all the ups and downs of their care journey.
The surgery to remove Damon’s brain tumor was successful, but he had severe complications and serious side-effects. At first, he had trouble walking, talking, swallowing, and using the right side of his body. The right side of his face was also paralyzed, and he could no longer close his eye or smile on that side of his mouth. Because it was difficult for Damon to move, the rehabilitation team visited him every day and found creative ways to help him recover. Soon after Damon’s surgery, his parents received the news they didn’t want to hear. Tests showed that Damon’s tumor was cancerous, and he was diagnosed with medulloblastoma, the most common form of brain cancer found in children. An MRI showed that the cancer had also spread to his spine. He began treatment right way and had a third surgery to place a permanent shunt in his brain. In collaboration with Damon’s oncology team, Damon’s parents decided on a treatment plan. The path included six rounds of high-dose chemotherapy, a bone marrow transplant, and 30 rounds of proton beam radiation. The treatment was aggressive and would become a fierce battle.
A multi-disciplinary team of doctors, nurses, and specialists were with Damon and his family every step of the way. Because of all the complications from Damon’s treatment, the family has worked with almost every department in the hospital. The mutual respect and consistent communication between the care team assured Damon’s parents that he was always receiving the best care possible. They were shown patience and empathy on the hardest days, and joy and celebration on the best days. During treatment Damon missed his entire year of kindergarten and most of first grade. He went from an active and playful boy to a child who could no longer walk or use his hands. He experienced permanent hearing and vision loss, and now needs to wear hearing aids and glasses. At times, retrieval of information and the paralysis on his face made speech difficult. Damon has also worn orthotic “super boots” throughout his treatment. For a time, Damon had to use a wheelchair, but eventually regained his strength and was able to get around with the use of a walker.
Today, Damon can walk independently, and even take steps without his boots. His speech and hands are mostly back to normal, so he can write and perform almost all tasks again. Thankfully, he was able to finish out first grade with the rest of his peers. He wouldn’t have been able to reach these incredible milestones without the expertise of the Children’s Minnesota rehabilitation
team.
Through it all, Damon has been a brave and courageous warrior. He sustained his cheerful, charming, and curious nature, even as he endured painful procedures and agonizing symptoms. His acceptance of his situation has been remarkable. His bright spirit has always been a source of hope and inspiration, and he has touched the lives of many. His family has been grateful to have an extensive community praying for them and providing support.
Damon’s goal was to be “cancer-free in ’23,” and last summer he received that happy news. Fortunately, this is still true today. However, as for many cancer survivors, the battle continues. Damon still works closely with his medical team and rehabilitation specialists. Most likely this will be the case for years to come, but he makes positive progress every day. By the summer of 2025, he hopes to independently enjoy all his favorite outdoor activities again.
At that visit, Damon appeared healthy, and his lab work came back normal. Other tests were scheduled to investigate the cause, but nothing was conclusive. Then, when Damon began to complain of severe headaches in the back of his head, the pediatrician recommended he be taken immediately to the ER at Children’s Minnesota. A CT scan showed a large tumor in Damon’s brain. It was a total shock for his parents. What they thought would be an overly cautious trip to the ER turned into a life-saving and extensive hospital stay. Damon’s family knew that something was going on with him physically, but they never could have imagined what was really happening.
Damon’s parents didn’t have time to settle into the shock. They immediately met with the neurology team who devised a plan for his care. The next day, Damon was scheduled for surgery to place an external shunt to relieve the pressure on his brain. They also met with the rehabilitation team right away. Physical, occupational, and speech therapists played games with Damon to establish his baseline—something not standard protocol in many pediatric facilities but is considered best practice. This allowed the care team to form a plan for recovery after surgery. Many of the therapists conducting Damon’s initial assessment still work with him today. From the very beginning they formed a close relationship with Damon’s family and have been by their side through all the ups and downs of their care journey.
The surgery to remove Damon’s brain tumor was successful, but he had severe complications and serious side-effects. At first, he had trouble walking, talking, swallowing, and using the right side of his body. The right side of his face was also paralyzed, and he could no longer close his eye or smile on that side of his mouth. Because it was difficult for Damon to move, the rehabilitation team visited him every day and found creative ways to help him recover. Soon after Damon’s surgery, his parents received the news they didn’t want to hear. Tests showed that Damon’s tumor was cancerous, and he was diagnosed with medulloblastoma, the most common form of brain cancer found in children. An MRI showed that the cancer had also spread to his spine. He began treatment right way and had a third surgery to place a permanent shunt in his brain. In collaboration with Damon’s oncology team, Damon’s parents decided on a treatment plan. The path included six rounds of high-dose chemotherapy, a bone marrow transplant, and 30 rounds of proton beam radiation. The treatment was aggressive and would become a fierce battle.
A multi-disciplinary team of doctors, nurses, and specialists were with Damon and his family every step of the way. Because of all the complications from Damon’s treatment, the family has worked with almost every department in the hospital. The mutual respect and consistent communication between the care team assured Damon’s parents that he was always receiving the best care possible. They were shown patience and empathy on the hardest days, and joy and celebration on the best days. During treatment Damon missed his entire year of kindergarten and most of first grade. He went from an active and playful boy to a child who could no longer walk or use his hands. He experienced permanent hearing and vision loss, and now needs to wear hearing aids and glasses. At times, retrieval of information and the paralysis on his face made speech difficult. Damon has also worn orthotic “super boots” throughout his treatment. For a time, Damon had to use a wheelchair, but eventually regained his strength and was able to get around with the use of a walker.
Today, Damon can walk independently, and even take steps without his boots. His speech and hands are mostly back to normal, so he can write and perform almost all tasks again. Thankfully, he was able to finish out first grade with the rest of his peers. He wouldn’t have been able to reach these incredible milestones without the expertise of the Children’s Minnesota rehabilitation
team.
Through it all, Damon has been a brave and courageous warrior. He sustained his cheerful, charming, and curious nature, even as he endured painful procedures and agonizing symptoms. His acceptance of his situation has been remarkable. His bright spirit has always been a source of hope and inspiration, and he has touched the lives of many. His family has been grateful to have an extensive community praying for them and providing support.
Damon’s goal was to be “cancer-free in ’23,” and last summer he received that happy news. Fortunately, this is still true today. However, as for many cancer survivors, the battle continues. Damon still works closely with his medical team and rehabilitation specialists. Most likely this will be the case for years to come, but he makes positive progress every day. By the summer of 2025, he hopes to independently enjoy all his favorite outdoor activities again.