Additional information and context for The Dragonfly Effect podcast released on May 30, 2019, called “Jeremy’s Story.” Dragonfly.org/podcast Information was provided for publication by Jeremy and his wife.
“Aiden was diagnosed with ALL (Acute Lymphoblastic Leukemia) on July 11, 2016. He was taken to the local hospital with abnormal bruising and persistent headache. They found he was very anemic. Aiden was rushed to Children’s Hospital by ambulance. That night we were told, “your son has cancer.” Along with that, they also found some type of mass in his head. They weren’t sure if it was a bleed in his brain, another type of cancer, or something else.
They treated his cancer aggressively with one-month of chemotherapy, hoping that whatever was in his sinus cavity would go away. After two days of intense chemo, Aiden’s headaches stopped. After a month, the mass in the sinus cavity was almost completely gone! Unfortunately, the doctors found another issue, something called residual disease in his bone marrow, which increased his risk of relapse.
After more chemotherapy, Aiden went into remission in November of 2016. However, the battle is still not over as treatment plans for leukemia are many years of chemo.
Aiden spent 11 months combined (so far) as an inpatient in the hospital with most of his admissions being between 2 weeks to a month long — not including outpatient procedures or doctor visits. One admission was from his painful experience with what was basically liver failure, and a very swollen and painful belly. This could have been deadly, but he pulled through like a champ.
He has endured more than 30 lumbar punctures, numerous IVs and steroids, and multiple blood transfusions. He has also had 10 days of radiation on his head to remove the rest of the mass and prevent its return. The good news is that he is not expected to need more radiation. However, he continues to need oral chemotherapy every day and IV chemo monthly, along with other medications and steroids. He also gets a lumbar puncture every three months.
Due to a port Aiden has in his chest, he has to follow sepsis protocol and be rushed to the hospital WITHIN ONE HOUR every time he gets a fever. There, they draw his blood cultures and start him on antibiotics. This can sometimes be challenging since we live in Indiana, but we make it work.
Today, Aiden is doing well overall. However, he does have side effects, including tooth decay, from chemo and steroids — things that he will have to deal with for the rest of his life. He also is shorter than most kids his age, his bones are weak, and it takes longer for his bone marrow to recover. He is expected to finish treatment in November 2019, and to have his port removed shortly thereafter. He will have to continue to visit the survivor clinic every 3 months, then every 6 months, then annually.
The fear of relapse is the worst.
Aiden has a 20% chance of relapse, so they are hopeful, but the chance of survival after relapse of Leukemia is very low. (More research is needed.) The intense treatments that are needed are horrifying, and we pray that we never have to cross that bridge. Unfortunately, this has happened to many families we have met along our journey.
With all the sadness fear, and pains that families have to go through with cancer, Dragonfly has helped put so many smiles on our faces. It has allowed us to “forget” for a few hours and to enjoy life – allowing some “normal” in a not so normal life. Dragonfly gave us things to do as a family in a safe environment, surrounding us with people who understand, people you don’t have to explain things to because they get it. Dragonfly is full of support.
The Dragonfly Foundation is a family, a great organization run by heartfelt, caring people. We are so blessed to be a part of this.”
To hear more of Aiden and Jeremy’s story, listen to this weeks Dragonfly Effect podcast.