Kohen Karns Leukemia Fund
Donation protected
“Mom, I wish we had a wishing well so I could wish to be done with this.” Kohen, age 9, told his mom after being readmitted to the hospital for relapsed, high risk Acute Myeloid Leukemia. Kohen had been in remission after a bone marrow transplant in 2018. On July 26, 2020 his family learned that his AML was back. Kohen is currently hospitalized receiving treatment, hoping to become a candidate for a second bone marrow transplant and to become a childhood cancer SURVIVOR!
If you have ever met Kohen, you know how special this boy is. Kohen is an energetic, empathetic, fun nine year old who you can’t help but fall in love with. One of his Oncologists frequently reminds him how easy he is to adore. Kohen finds joy in helping others feel their best. The Hospital airs bingo daily and Kohen picks prizes to gift other children. You can also find him roaming the halls flying his drone or driving his remote cars for the younger children who watch them from their windows. This kid is amazing and continuously surprises everyone with what he can achieve. Kohen plays an active role in his treatment, giving himself his own shots and swallowing pills without a fight.
How Can You Help?
Kohen’s treatment for AML and recovery from a bone marrow transplant is a long process. The inpatient stay is lengthy and once discharged, Kohen will require isolation at home and frequent visits to the Heme/Onc Clinic for monitoring. These visits start out daily and become more spread out as his new bone marrow becomes stronger.
Cancer treatment for the Karns Family is not unfamiliar territory. What is, is navigating Kohen’s treatment during a pandemic. Lisa is a RN in the ICU at Mercy Health Saint Marys. Her unit is a designated COVID floor. Since relapse Lisa has not been back to work. With Kohen’s immune suppression, Eric and Lisa being marrow donors, the climbing cases of COVID, the family and Kohen’s treatment team have decided the risk is too high for Lisa to work. They also needed to factor in the strict COVID restrictions at Helen DeVos Children’s Hospital, which only allow two visitors per patient. By not working, Lisa is able to stay with Kohen so he is never alone in the hospital. If Lisa must return to work, she would need to quarantine prior to seeing Kohen in the hospital adding more stress and distance to loved ones for Kohen. Kohen also has a seven year old brother, Ford, who has been staying home and attending school virtually, who needs to be cared for as well.
The financial burdens of having cancer in addition to a decreased income, COVID restrictions and the increased risk for illness are placing further emotional burden on the family. The Karns family are Warriors. They have battled cancer once, they have rebuilt after the loss of their dream business, and are now faced with childhood cancer once again. It is no doubt they will rise above this, but with our help and support they can rise easier, with less stress and burden of debt. The Kohen Karns Family Fund was created to support 9 year old Kohen and his family while he undergoes treatment for relapsed Acute Myeloid Leukemia. The funds raised from this campaign will help support Kohen’s family and provide living expenses while they support Kohen through his cancer treatment and prolonged hospitalization.
If you would like to assist with their financial burden, any donation would be greatly appreciated. On behalf of Lisa, Eric, Kohen and Ford, their friends and family, I appreciate the outpouring of love, prayers and support shown over the past months and undoubtedly in the months to come.
What does he have?
Kohen has AML, Acute Myeloid Leukemia. Leukemia is a cancer of the blood. Kohen’s type of leukemia attacks the myeloid cells, or the cells that go to form the different types of blood cells in our bodies. There are various subtypes of AML depending on genetic abnormalities found on the cells. Each subtype, in combination with other factors, has their own prognosis. Kohen’s subtype is FLT3+ ITD and TKI. This type has a very poor prognosis, best survived with a bone marrow transplant.
How did we find out?
Back in March 2018, after a week of intermittent fevers, belly and leg aches, Kohen developed a tender, slightly swollen lymph node below his jawline. By the evening it had progressed in size, and was much more concerning. A trip to the Pediatrician the next morning showed a low hemoglobin level and Kohen was sent to the lab for confirmation and additional labs. The lab results confirmed the low hemoglobin level and additionally an extremely elevated white blood cell count and low platelets. Kohen’s Pediatrician directed Lisa to take Kohen directly to the ER where he was soon admitted and introduced to the Oncology team. The next day Kohen had his first lumbar puncture (to see if the leukemia was present in his spinal fluid), bone marrow aspiration and chemotherapy injected into his spine.
How is he doing?
Once diagnosed, Kohen was hospitalized for three rounds of chemotherapy and was able to have a bone marrow transplant on July 31, 2018. Kohen’s treatment and recovery was far from textbook. After experiencing numerous complications, including a PICU stay on a ventilator, he was finally discharged from the hospital October 26, 2018. This was a total of 224 days in the hospital, including a five day respite in June between treatments.
The next two years were uneventful. Kohen recovered and rehabbed back to the active, fun loving child he was before cancer. Kohen had suffered no residual effects from treatment. He enjoyed being with friends, going to school, playing sports, spending time with his brother and cousins on Big Star Lake and camping with friends.
On July 27, 2020, Kohen returned to the Heme/Onc Clinic for a routine two year transplant workup and bone marrow aspiration. The next day, while working as a Nurse, Lisa received the gut wrenching call that Kohen’s cancer was back.
Relapse: Now what?
On Friday, August 7, 2020, Kohen was admitted to Helen DeVos Children’s Hospital to begin chemotherapy for relapsed AML. Kohen sailed through the first round. He received a new treatment that is currently being studied as a Frontline therapy for AML. Unfortunately, the treatment didn’t yield the great results for Kohen as it was supposed to. He still had about 6% blasts (leukemia cells) in his bone marrow. The second round hit Kohen hard. He was diagnosed with Veno-occlusive disease, a rare complication of one of the medications he received. Kohen experienced extreme fluid overload and respiratory failure requiring a PICU stay, peritoneal dialysis catheter and mechanical ventilation for six days.
Kohen’s body suffered a gigantic blow and the doctors didn’t feel he would survive a third round of aggressive treatment. Kohen is currently receiving a bridging therapy with the goal to keep the leukemia low and give time to allow his body and organs to recover so he may become a candidate for a second bone marrow transplant.
Kohen remains hospitalized and more than likely will remain in the hospital until after transplant. Kohen’s mom keeps detailed updates on Kohen via his Facebook group: ABC.123 Leukemia - Kohen’s Journey. We will be sure to share them here as well, for those of you not on Facebook.
Follow Kohen’s journey here:
https://www.facebook.com/groups/614022962274490/?ref=share
If you have ever met Kohen, you know how special this boy is. Kohen is an energetic, empathetic, fun nine year old who you can’t help but fall in love with. One of his Oncologists frequently reminds him how easy he is to adore. Kohen finds joy in helping others feel their best. The Hospital airs bingo daily and Kohen picks prizes to gift other children. You can also find him roaming the halls flying his drone or driving his remote cars for the younger children who watch them from their windows. This kid is amazing and continuously surprises everyone with what he can achieve. Kohen plays an active role in his treatment, giving himself his own shots and swallowing pills without a fight.
How Can You Help?
Kohen’s treatment for AML and recovery from a bone marrow transplant is a long process. The inpatient stay is lengthy and once discharged, Kohen will require isolation at home and frequent visits to the Heme/Onc Clinic for monitoring. These visits start out daily and become more spread out as his new bone marrow becomes stronger.
Cancer treatment for the Karns Family is not unfamiliar territory. What is, is navigating Kohen’s treatment during a pandemic. Lisa is a RN in the ICU at Mercy Health Saint Marys. Her unit is a designated COVID floor. Since relapse Lisa has not been back to work. With Kohen’s immune suppression, Eric and Lisa being marrow donors, the climbing cases of COVID, the family and Kohen’s treatment team have decided the risk is too high for Lisa to work. They also needed to factor in the strict COVID restrictions at Helen DeVos Children’s Hospital, which only allow two visitors per patient. By not working, Lisa is able to stay with Kohen so he is never alone in the hospital. If Lisa must return to work, she would need to quarantine prior to seeing Kohen in the hospital adding more stress and distance to loved ones for Kohen. Kohen also has a seven year old brother, Ford, who has been staying home and attending school virtually, who needs to be cared for as well.
The financial burdens of having cancer in addition to a decreased income, COVID restrictions and the increased risk for illness are placing further emotional burden on the family. The Karns family are Warriors. They have battled cancer once, they have rebuilt after the loss of their dream business, and are now faced with childhood cancer once again. It is no doubt they will rise above this, but with our help and support they can rise easier, with less stress and burden of debt. The Kohen Karns Family Fund was created to support 9 year old Kohen and his family while he undergoes treatment for relapsed Acute Myeloid Leukemia. The funds raised from this campaign will help support Kohen’s family and provide living expenses while they support Kohen through his cancer treatment and prolonged hospitalization.
If you would like to assist with their financial burden, any donation would be greatly appreciated. On behalf of Lisa, Eric, Kohen and Ford, their friends and family, I appreciate the outpouring of love, prayers and support shown over the past months and undoubtedly in the months to come.
What does he have?
Kohen has AML, Acute Myeloid Leukemia. Leukemia is a cancer of the blood. Kohen’s type of leukemia attacks the myeloid cells, or the cells that go to form the different types of blood cells in our bodies. There are various subtypes of AML depending on genetic abnormalities found on the cells. Each subtype, in combination with other factors, has their own prognosis. Kohen’s subtype is FLT3+ ITD and TKI. This type has a very poor prognosis, best survived with a bone marrow transplant.
How did we find out?
Back in March 2018, after a week of intermittent fevers, belly and leg aches, Kohen developed a tender, slightly swollen lymph node below his jawline. By the evening it had progressed in size, and was much more concerning. A trip to the Pediatrician the next morning showed a low hemoglobin level and Kohen was sent to the lab for confirmation and additional labs. The lab results confirmed the low hemoglobin level and additionally an extremely elevated white blood cell count and low platelets. Kohen’s Pediatrician directed Lisa to take Kohen directly to the ER where he was soon admitted and introduced to the Oncology team. The next day Kohen had his first lumbar puncture (to see if the leukemia was present in his spinal fluid), bone marrow aspiration and chemotherapy injected into his spine.
How is he doing?
Once diagnosed, Kohen was hospitalized for three rounds of chemotherapy and was able to have a bone marrow transplant on July 31, 2018. Kohen’s treatment and recovery was far from textbook. After experiencing numerous complications, including a PICU stay on a ventilator, he was finally discharged from the hospital October 26, 2018. This was a total of 224 days in the hospital, including a five day respite in June between treatments.
The next two years were uneventful. Kohen recovered and rehabbed back to the active, fun loving child he was before cancer. Kohen had suffered no residual effects from treatment. He enjoyed being with friends, going to school, playing sports, spending time with his brother and cousins on Big Star Lake and camping with friends.
On July 27, 2020, Kohen returned to the Heme/Onc Clinic for a routine two year transplant workup and bone marrow aspiration. The next day, while working as a Nurse, Lisa received the gut wrenching call that Kohen’s cancer was back.
Relapse: Now what?
On Friday, August 7, 2020, Kohen was admitted to Helen DeVos Children’s Hospital to begin chemotherapy for relapsed AML. Kohen sailed through the first round. He received a new treatment that is currently being studied as a Frontline therapy for AML. Unfortunately, the treatment didn’t yield the great results for Kohen as it was supposed to. He still had about 6% blasts (leukemia cells) in his bone marrow. The second round hit Kohen hard. He was diagnosed with Veno-occlusive disease, a rare complication of one of the medications he received. Kohen experienced extreme fluid overload and respiratory failure requiring a PICU stay, peritoneal dialysis catheter and mechanical ventilation for six days.
Kohen’s body suffered a gigantic blow and the doctors didn’t feel he would survive a third round of aggressive treatment. Kohen is currently receiving a bridging therapy with the goal to keep the leukemia low and give time to allow his body and organs to recover so he may become a candidate for a second bone marrow transplant.
Kohen remains hospitalized and more than likely will remain in the hospital until after transplant. Kohen’s mom keeps detailed updates on Kohen via his Facebook group: ABC.123 Leukemia - Kohen’s Journey. We will be sure to share them here as well, for those of you not on Facebook.
Follow Kohen’s journey here:
https://www.facebook.com/groups/614022962274490/?ref=share
Organizer and beneficiary
Staci Carroll
Organizer
Grand Rapids, MI
Lisa Karns
Beneficiary