Jack is a very thoughtful 8-year-old. He takes a minute to warm up to people, but will very quickly start talking your ear off about Pokémon, or rocks, or his dog Eevee. He is silly and feels intensely. He has a newfound interest in geology and has rock collection he is very proud of.
Jack was diagnosed with ALL in May 2017. He was diagnosed with JPA in December of 2017.
For ALL, Jack had extreme pain in his leg. At first, we thought he had growing pains. Then it got to the point where we couldn’t touch him without him crying out in pain so we took him to the ER thinking he had a fracture. They did bloodwork to rule out a blood infection and found blasts in his bloodwork.
His JPA was asymptomatic, we found it by chance. Jack had a reaction to one of his ALL chemotherapy medications that resulted in abnormal neurological behavior. We took him to the ER because he was non-responsive but awake. The neurological issues turned out to be Methotrexate toxicity, a side effect of chemo treatment. But when the doctors ran an MRI to confirm this diagnosis they found an unrelated tumor near Jack’s brain stem.
Jack has been in treatment for just over 2 years and has 8 months left for ALL. He went from intense weekly chemotherapy in the first 9 months of treatment to one a month treatment for maintenance.
The JPA was partially removed in December of 2017, but the doctors were not able to remove it all because of its location in relation to his brain stem. Because he is in treatment for ALL we have been unable to treat his JPA further. We are monitoring the JPA with regular MRIs. We will see how the tumor behaves once ALL treatment is over to see if we need to do anything else in treating his JPA. So far only small fluctuations have been seen.
Hope session by Stephanie Lynne Photography