Eli is a joy once you get to know him. He can be a bit shy at first. He loves to crack jokes and is a king at sarcasm. He has 3 loves and passions: hockey, hunting and fishing. Prior to diagnosis he was the top 2006 hockey player in the state. He plays for teams in 3 different states. He is always trying to get fishing or hunting for anything. He’s been doing all of these things since he was about 3.
In the summer of 2017, he seemed a bit more tired when skating then usual. He had some strange bruises that I noticed. Then, he came home from practice complaining that he just couldn’t skate – he was too tired. His sister noticed a rash on his temple. I am a nurse practitioner and immediately recognized it as petechiae. I started looking him over and noticed he had it in his mouth and ear as well. I took him to the clinic the next morning where we immediately were transferred to a children’s hospital.
Eli has undergone multiple bone marrow biopsies, spinal chemotherapy, oral and iv chemo therapy, multiple blood and platelet transfusions. Along with MRI’s, CT’s and multiple hospitalizations and ER visits. This will continue for 3 1/2 years.
The first year of treatment was horrendous. He had so much pain. His muscles wasted away and he couldn’t even get himself out of the bathtub. He couldn’t get up steps without assistance. He missed an entire year of school. He was so depressed and angry. Prior to diagnosis, Eli was extremely active. He played hockey for multiple teams. He was unable to do any of the things he enjoyed.
The closest ER he can go to is 1 hour 15 minutes away. His treating facility is 3 hours away. Once discharged from hospital we were traveling there at least twice weekly. Initially we had to miss a lot of work. He couldn’t be left alone. His therapy is also 1 hour 15 minutes away.
Nothing could be scheduled or planned in advance due to his treatment and the unknown. That is getting a little better. Honestly, I cried everyday for at least a year. I have gotten to once or twice a week now. My daughter feels a bit neglected as everything revolves around Eli. I know she doesn’t want to feel that way, but she is a kid and cannot help it. There seems to be more stress reactions within our family. We try to do as much as a family as we can as Eli is very high risk for relapse. If relapse happens his odds are not good. I truly feel this is eating us up from the inside, constant fear and anxiety for what could happen to him.
Hope session by Kaitlin Brown Photography | Facebook | Instagram