“The MPN Research Foundation funds the research around this disease...There is still so much we don’t know, but the foundation is a big part of finding the next piece. They are the framework for the staircase where each step will be laid as we move forward finding answers with MPNs.”
The Story of a Young Jedi
Most patients are diagnosed with an MPN after age sixty. Most, but not all. There are exceptions to every rule in life. And Jedi* is an exception. He is just ten-years-old and living with Polycythemia Vera.
Jedi’s mother Sarah was scheduling well visits for her children in 2016; her older son didn’t want to be seen by a “baby doctor” anymore, and of course neither did little brother Jedi then either. She planned a well visit for her children with her husband’s general practitioner. During Jedi’s exam, the doctor asked many questions. Sarah told him about her younger son's extreme leg pain, tingling hands and feet, and stomach pains. The doctor wanted to run a blood test. Sarah was hesitant because she believed these were childhood growing pains. Then she heard the Doctor say, “If it were my child I would.” Sarah was startled and her radar went up. Did the doctor sense something else going on? True, her son could never sleep through the night. It was just growing pains though she reassured herself.
And then the phone call came from the doctor. “He explained that he thought Jedi had Essential Thrombocythemia. He said he’d taken extra time to send the file to a few other doctors and recognized it as ET due to his adult patients with it but didn’t think it occurred in children.” Sarah says, “Because he was a child, it was hard for him to attribute what was normal. After his diagnosis, Jedi said, ‘You mean you don’t have headaches every day?’”
Jedi has only been diagnosed for eighteen months (initially with ET, now with PV JAK2 Mutation), but this family’s world has changed in every way since then. The stress of having a child with a rare diagnosis can quickly tax a family. They now juggle mounting medical bills, two parents working full-time while trying to care for a sick child, balancing time with their older son, managing the endless doctor appointments, and still trying to fit in the “normal” family stuff too. There’s also the long-term worry parents face when caring for a sick child. As Sarah explains, there are feelings of isolation and grief. “The grief of knowing that your vision for your child has changed so dramatically. He might be facing a bone marrow transplant when all of his friends are going to college.”
Jedi’s world has, of course, changed too. This past summer he had an MRI after doctors thought he may have had a brain bleed. A natural athlete, the soccer he once loved is now too risky for him to play because of the elevated risk of bleeding (Jedi has acquired Von Willebrand disease which can occur with high platelets). However, Jedi was able to trade a soccer ball for a furry friend. Chewy, Jedi’s service dog, keeps a close eye on him, so close in-fact he recently noticed Jedi’s legs were starting to bother him and woke Jedi in the middle of the night before his leg pain escalated. Sarah was then able to quickly administer Jedi’s medicine before his pain became excruciating and everyone easily went back to sleep. In the past, it has taken almost two hours for Jedi to get comfortable and sleeping again when he is awakened with leg pain. Chewy isn’t too bad of a sports companion either. Jedi is teaching him agility and they both love learning the jumps and tunnels.
Sarah wants other parents of pediatric MPN patients to know, “This is a marathon, not a race...make sure you create guidelines with your significant other as to how you are going to make care decisions. Recognize all the children in your house and know that they need your attention too.” And in less than two years, Sarah is thankful to have the support of her work family, close friends, and Jedi’s grandparents who have all helped and offered support in different capacities.
When Jedi was first diagnosed, Sarah relentlessly searched for answers for her son that she couldn’t find. There wasn’t a cure. But as she says, “The MPN Research Foundation funds the research around this disease...there is still so much we don’t know, but the foundation is a big part of finding the next piece. They are the framework for the staircase where each step will be laid as we move forward finding answers with MPNs.” And with the support of donors, the foundation can continue to build this staircase for Jedi’s future, one step at a time.
*Jedi's real name has been changed to protect his privacy
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.