Jeffrey Ehrman II Memorial Fund
Donation protected
Jeffrey Brian Ehrman II passed away on the morning of Saturday, July 28, 2018. Jeffrey spent 13 months fighting a never seen combination of extremely rare diseases. We are raising funds to pay for Jeffrey’s funeral and to create scholarships in his name for High School Marching Band and Robotics Students.
In June 2017, Jeffrey was nearing the end of his freshman year at Mission Hills High School in San Marcos, California. During his very busy freshman year, Jeffrey played the tenor saxophone in the Mission Hills Cardinal Alliance marching band, Symphonic band and Jazz band . In addition, Jeffrey joined the Iron Kodiaks robotics team.
On evening of June 4, 2017, Jeffrey was taken to the emergency room with shortness of breath and exhaustion. He was transferred to Radys Children’s Hospital in San Diego. The initial diagnosis was Leukemia. The news left the family devastated. Over the next few weeks, it was determined that Jeffrey did not have Leukemia but had two exceedingly rare hematological conditions called Myelofibrosis and Secondary Hemophagocytic lymphohistiocytosis(HLH). Myelofibrosis occurs most often in adults with fewer than 100 cases of Pediatric Myelofibrosis being reported in the world (2014 ).
Due to Jeffrey’s weaken immune system, he was forced to leave school before his sophomore year. He was devastated that he would not be participating in marching band, symphonic band, jazz band and robotics. Jeffrey put down his saxophone for the first time in five years and didn’t pick it up for the remainder of 2017. Jeffrey continued his school studies as a sophomore using the internet and remote learning.
Jeffrey’s official diagnosis is Idiopathic Immuno Dysregulation with Pediatric Myelofibrosis and Secondary HLH. The source of his disease is not understood and continues to be unknown. It is hoped that Jeffrey’s autopsy will reveal the reasons for this rare and deadly combination so that no other family will suffer a devastating loss as we have.
The challenges that Jeffrey went through were many. Since June 4, 2017, Jeffrey spent more than 150 nights in the hospital which included three trips to the Pediatric Intensive Care Unit (PICU) totaling 30 nights. Some of the experiences that Jeffrey suffered through include:
- Pancytopenia
o Low counts of platelets and red and white blood cells
o He received more than 100 units of blood product transfusions
- Posterior reversible encephalopathy syndrome (PRES)
o Resulted in a seizure and fall in the hospital room
o 1st trip to PICU and a code “blue” when he stopped breathing
- Avascular necrosis
o Made it impossible to move due to hip pain
- Coma brought on by Hydrocephalus
o 2nd trip to PICU
o Brain surgery to insert an external ventricular drain
o Six weeks of intensive physical, occupational and speech therapy
- Bone Marrow Transplant
o 15 days of chemotherapy
o 25 days of recovery
- Kidney and Liver shutdown
o 3rd and final trip to the PICU
Jeffrey entered the hospital on May 29, 2018 for his Bone Marrow Transplant. After 15 days of chemotherapy preparation, Jeffrey had his Bone Marrow Transplant on June 14, 2018. The results of the transplant were amazing. The donor cells reached engraftment within 12 days and he was able to leave the hospital 25 days after the transplant. His departure on July 9, 2018 was a time of great celebration with his doctors and nurses. It included Jeffrey’s first saxophone performance of 2018 . The following ten days at home were Jeffrey’s best since June 2017. On July 19, 2018, Jeffrey was admitted back into the hospital with low blood counts and fatigue. After a few days it was determined that the HLH had returned. His kidneys and then his liver shutdown over following days. Jeffrey passed away on the morning of July 28, 2018. Jeffrey was 15 years old.
Tina, Ashley and I appreciate your assistance as we move forward without this amazing young man in our lives. We will carry the memory of his grace, wit, perpetual smile and positive attitude with us forever.
-Jeff Ehrman
In June 2017, Jeffrey was nearing the end of his freshman year at Mission Hills High School in San Marcos, California. During his very busy freshman year, Jeffrey played the tenor saxophone in the Mission Hills Cardinal Alliance marching band, Symphonic band and Jazz band . In addition, Jeffrey joined the Iron Kodiaks robotics team.
On evening of June 4, 2017, Jeffrey was taken to the emergency room with shortness of breath and exhaustion. He was transferred to Radys Children’s Hospital in San Diego. The initial diagnosis was Leukemia. The news left the family devastated. Over the next few weeks, it was determined that Jeffrey did not have Leukemia but had two exceedingly rare hematological conditions called Myelofibrosis and Secondary Hemophagocytic lymphohistiocytosis(HLH). Myelofibrosis occurs most often in adults with fewer than 100 cases of Pediatric Myelofibrosis being reported in the world (2014 ).
Due to Jeffrey’s weaken immune system, he was forced to leave school before his sophomore year. He was devastated that he would not be participating in marching band, symphonic band, jazz band and robotics. Jeffrey put down his saxophone for the first time in five years and didn’t pick it up for the remainder of 2017. Jeffrey continued his school studies as a sophomore using the internet and remote learning.
Jeffrey’s official diagnosis is Idiopathic Immuno Dysregulation with Pediatric Myelofibrosis and Secondary HLH. The source of his disease is not understood and continues to be unknown. It is hoped that Jeffrey’s autopsy will reveal the reasons for this rare and deadly combination so that no other family will suffer a devastating loss as we have.
The challenges that Jeffrey went through were many. Since June 4, 2017, Jeffrey spent more than 150 nights in the hospital which included three trips to the Pediatric Intensive Care Unit (PICU) totaling 30 nights. Some of the experiences that Jeffrey suffered through include:
- Pancytopenia
o Low counts of platelets and red and white blood cells
o He received more than 100 units of blood product transfusions
- Posterior reversible encephalopathy syndrome (PRES)
o Resulted in a seizure and fall in the hospital room
o 1st trip to PICU and a code “blue” when he stopped breathing
- Avascular necrosis
o Made it impossible to move due to hip pain
- Coma brought on by Hydrocephalus
o 2nd trip to PICU
o Brain surgery to insert an external ventricular drain
o Six weeks of intensive physical, occupational and speech therapy
- Bone Marrow Transplant
o 15 days of chemotherapy
o 25 days of recovery
- Kidney and Liver shutdown
o 3rd and final trip to the PICU
Jeffrey entered the hospital on May 29, 2018 for his Bone Marrow Transplant. After 15 days of chemotherapy preparation, Jeffrey had his Bone Marrow Transplant on June 14, 2018. The results of the transplant were amazing. The donor cells reached engraftment within 12 days and he was able to leave the hospital 25 days after the transplant. His departure on July 9, 2018 was a time of great celebration with his doctors and nurses. It included Jeffrey’s first saxophone performance of 2018 . The following ten days at home were Jeffrey’s best since June 2017. On July 19, 2018, Jeffrey was admitted back into the hospital with low blood counts and fatigue. After a few days it was determined that the HLH had returned. His kidneys and then his liver shutdown over following days. Jeffrey passed away on the morning of July 28, 2018. Jeffrey was 15 years old.
Tina, Ashley and I appreciate your assistance as we move forward without this amazing young man in our lives. We will carry the memory of his grace, wit, perpetual smile and positive attitude with us forever.
-Jeff Ehrman
Organizer
Jeff Ehrman
Organizer
Escondido, CA