Two chronic illnesses in one family can be perceived as a gift
Why I struggled when my son was diagnosed with immune thrombocytopenia
A few weeks ago, I was driving to see my son, Jake, at college. I’ve written before about visiting him, but this was different from my usual college visits.
It was 4:45 a.m. when we got Jake’s call: “I’m heading to the hospital.” I immediately packed a bag and hit the dark highway — alone.
Since my husband, Arman, was diagnosed in 2009 with early-onset Parkinson’s disease — at age 38 — I’ve never left him alone overnight. I’m just not comfortable with that. I need to be there to help him get dressed and shave, prepare his meals, and be there in case of a fall. But this time, I couldn’t wait the 30 minutes it would take him to get dressed and pack up all his medications and deep brain stimulator chargers. My son needed me more, so he was my priority.
Jake is a healthy 19-year-old, but he was diagnosed with acute immune thrombocytopenia (ITP) during the winter of 2021 as a result of the Epstein-Barr virus (the virus that causes mononucleosis). His symptoms started with a painful sore throat that was so excruciating he was unable to swallow his own saliva.
He was tested for COVID-19 and strep throat several times at our local pharmacy, but all the tests were negative. We then consulted our pediatrician, who immediately diagnosed mononucleosis, even before Jake’s blood test results had come back. We soon received a call from the hospital alerting us that Jake’s platelet count was at 11,000, which is dangerously low. (A normal count ranges from 150,000 to 450,000.) His immune system was attacking his platelets, and he needed to be hospitalized immediately.
This was a challenging time for all of us, as we didn’t know how to remain strong in addition to our situation with Parkinson’s disease. Watching my husband suffer is one thing, but it’s inexplicably painful to see my baby suffer. But as we always do, we got through it together as the strong family of five that we are. My daughters didn’t wait even a minute; they headed home (one from college, the other from law school) to be by Jake’s side.
Jake was treated with intravenous immunoglobulin and high-dose steroids. While he responded well, his platelets continued to drop soon after each treatment. It was his senior year of high school, and all he wanted to do was play baseball with his team. Unfortunately, it was nearly impossible to make this happen, as the risk of being hit with a ball or bat was high. So he sat on the bench and watched the season go by from the dugout.
We learned quickly that ITP was an extremely rare complication of the Epstein-Barr virus. Just like BioNews, the parent company of this website, we are rare! There was no way of knowing if ITP would become a chronic illness for Jake, or if it would go away as soon as the mono did.
It’s now the spring of 2023, and Jake’s platelets are at a steady number (knock on wood!). They are still lower than before mononucleosis, but he is in a safe range. Whereas he once had bloodwork every other day, he now tests monthly. Just like everything in our life, we are cautiously optimistic.
As it turned out, I probably didn’t need to rush to see my son that day a few weeks back. It ended up being strep throat, which was resistant to his initial medication. But a few hours of IV antibiotics kicked the strep to the curb. I have to learn that Jake can weather some storms without me by his side.
Looking back, I had difficulty accepting another (potentially) chronic illness into our life. It felt like another blow to our family in the boxing game we call life. I started to feel as if we were cursed and wondered what the next hit might be.
However, as time passed, I realized how physically and mentally strong my son is, and how I could learn from him. I also watched my daughters pull together and become the backbone of our family when I simply couldn’t bear the weight. My children have grown into these unbreakable humans, likely because they have a parent with Parkinson’s disease.
What sometimes can feel like a curse can also be interpreted as a gift, depending on how you perceive it. The bright side continues to be the best side for us to focus on.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Thank you very much.
"THE BRIGHT SIDE" "A CURSE CAN BE INTERPRETED AS A GIFT , DEPENDING ON HOW YOU PERCEIVE IT', both phrases like sunshine illuminate my way of fight against Parkinson's disease.
Your husband,son,daughter and you gave me the encouragement and the strength.
A warrior always faces blood.
A explorer alway faces dangerous mountains.
Live is full of challenges.
Parkinson's disease is a test of our strength and optimism as human being.
please accept the blessing from a 76-year-old Parkinson' disease patient in Beijing China.
Good luck to you and your family.
Thank you for your kind words and blessings; it is very much appreciated!
Thanks for the reply.
A man thousands of miles away gives his best wishes to you and your family.