Essentials Pouch

Meet Leukemia Warrior Jordan Johnson of Albany New York

His story as shared by his Mother Natalie 

One week after my son's tenth birthday, on an early spring day he went to the doctor's office for routine labs, just a normal appointment, until it wasn't. The platelet count was extremely low and set us upon a path I was too familiar with. As a child I had AML; my sister died from complications of AML My mother lost her mother to AML  Now I was certain. Even before the official diagnosis that my son, Jordan would also be facing AML and he is. Within a very few days he began bone marrow tests, spinal chemo, and IV chemo, which was then followed by side effects of varying degrees. This process has continued for six months. Continuous transfusions of blood have been a gift beyond measure in keeping Jordan alive and has allowed him to fight off additional problems and complications. To all those who donate blood, we are deeply grateful,  Know that YOU have made a significant difference to children fighting cancer.

Jordan almost sailed through the first couple of months; I was in awe of his strength, his endurance, and his ability to adjust to living in the Children's Hospital where he has lived now for six months. 

He was allowed to go home for a week in late June and early July, where he able to go out in public with a mask on. He attended his "moving up" day at school and a huge picnic with one of our favorite support groups, where he led the dancing! Immediately after the Fourth of July I readmitted Jordan for his third round of chemo, thinking maybe we'll just get through this chemo "unscathed", with no real crisis.  Everyone in my family and our medical team continued to be surprised at how his body was handling the load of chemo he was receiving, until one night about a week after treatment, Jordan was rushed to the Pediatric ICU where he was placed on a ventilator, medically paralyzed, and fought for his life for three weeks.  Jordan's lungs were bleeding as a result of his third round of chemo. 

This is as serious as it gets no more escaping "unscathed". His body and bone marrow were "tired" the doctors told us. When Jordan was allowed to wake up after this walk on the tightrope he had no strength at all. He was moved to a facility that specializes in physical, occupational, and speech therapy so that he could be brought back to being a pre-teen boy. There was also another goal in mind: to rehab him enough to endure his last round of chemo.

Jordan was readmitted from that facility back to the Children's Hospital in late August where his bone marrow was given more time to recover. They allowed him a brief visit at home but chemo began in mid-September, 2017. On his final date of chemo he was sent back to the PICU and then the OR, to have his infected central line removed. 

He is still recovering and confined to his room for the protection of his weakened immune system. Entertaining a ten year old who loves to be outdoors, a go get 'em kind of boy is a daily challenge for his family and the hospital staff.  Jordan's medical vocabulary is now quite substantial and he is very comfortable entertaining his medical care teams. He participates in medical conversations and his grasp of procedures and daily nursing care leads to questioning the things happening to him, sometimes in a humorous way and sometimes in a "do you know what you are doing" way. 

We hope to bring Jordan home in mid-October, 2017, after a very, very long six months in the hospital. Pediatric Hematology Oncology clinic appointments will consume a large part of his life, but he will resume being his happy, humorous, active self and I will be extremely grateful for all those who have saved his life, since that day when the earth caved in beneath my feet.