Hemophagocytic Lymphohistiocytosis

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Hemophagocytic Lymphohistiocytosis
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    Megan McCleary

    Building a Life With Chronic Illness on the Other Side of Terminal

    Hi, my name is Megan McCleary and like any kid, I didn’t get away from childhood without some trauma. My dad was an alcoholic. I was raped, and then some before I was 18. I was diagnosed when I was 15 with hemophagocytic-lymphohistiocytosis in the summer of 2014. I was a newly minted sophomore in high school, on the marching band team. I played the flute. I was an honor student, at the time I thought I was going to be a nurse. That was the before. I was treated with high dose steroids, etoposide chemotherapy. I spent weeks in the ICU at Arkansas Children’s Hospital – doing physical therapy, getting treatment, learning to live again. My family watched me get sick, watched me sit at death’s door waiting for him to take me to heaven. And then, I survived. Since HLH, I’ve since been diagnosed with lupus (SLE), POTS, tachycardia, avascular necrosis, early on-set osteoporosis, asthma, major depressive disorder, severe anxiety disorder, PTSD, and obsessive-compulsive disorder. I’m constantly sick with urinary tract infections, ear infections, chronic rashes, butterfly rashes, strep-throat, bronchitis and so much more. I am in pain every single day of my life. I’ve had multiple surgeries such as having my knee and my hips replaced, having my bones decompressed for Pete’s sake. I take 17 pills at night, 12 in the morning and three mid-day. I pick up over $800 worth of medications. I have a wheelchair; I have a wheelchair handicap place card. I still need my wheelchair; I still can’t go a whole day without feeling pains everywhere in my body. This is the aftermath. I’m not telling you these things to feel sorry for me, I’m telling you these things because even though I’m a little fragile, even though I am a little scarred over, even though I have panic attacks and night terrors, even though I still baffle doctors, even though I can’t stand for long periods of time, even though I am hurting … I have peace. I have made peace with my chronic illness, but that doesn’t mean I have given up hope that there may a cure. That there will be a day I can walk without pain. That one day there will be a miracle treatment for me. That one day, I’ll be OK. I have hope still. It has been six years now since first being diagnosed. I’m a pharmacy technician. I’m going to college at the University of Arkansas. I’m a food science major with a concentration in Poultry Science. I want to be a QA facilitator. I want to be ready for tomorrow. Despite my shortcomings, I’m going to be OK. The past was hard, but that doesn’t mean there isn’t hope. My mom (my hero) says there is no coincidences in life, that everything happens for a reason and they make you stronger. I was strong before, but I am stronger now, and I’ll be stronger yet. I’m not writing this to tell you to be happy with your chronic illness, I’m not belittling your chronic illness, but learn to be the main character in your book. Be more than your disease. I say this because it is possible to be on the other side of happiness. It is possible to hope for treatment. It may not be today; it may not be tomorrow but the world is ever-changing and the world is here for you. The world is for your taking. So, take it for all its worth. I say that because this is the after. This is life beyond terminal.

    Community Voices

    You Never Know Who You Might Be Inspiring

    Last Season the St. Louis Blues had a unique good luck charm.  11-year-old Laila Anderson is a huge fan and became a viral icon for the team.  Young Laila was diagnosed with hemophagocyticlymphohistiocytosis, which causes the immune system to fail.  White blood cells not only don’t work in a helpful way, but can actually cause harm to the liver, spleen and bone marrow.  Laila had nearly died battling her condition, however continued to be an outspoken proud St. Louis Blues fan.  After meeting with the team last year they realized how inspirational her positive spirit was.  She had to endure a period of isolation for her illness, but was able to make it to the winning game and was invited onto the ice to celebrate with the Stanley Cup and with the team.

    The St. Louis Blues recently had their Stanley Cup ring ceremony and the championship rings were unveiled.  The rings included over 10.6 carats of precious stones (diamonds and sapphires), but also included a heartwearming tribute to Laila in each ring.  Her strength was a continuous motivation for the team.  In fact, two players from the team recently showed up at her house to present her with her very own championship ring, which she promptly kissed while happy tears were flowing.

    What a great reminder that our attitude and the way we fight our battles can be a motivation to so many people, some we may never even meet or know about. #hemophagocyticlymphohistiocytosis #raredisease #parenting

    Cynthia Godin

    Deciding to Have More Kids After First Son Was Born With Rare Disease

    I’m writing this as I sit here, 37 weeks pregnant, in the labour and delivery unit of a hospital. With my cervical sticker in place and the monitors hooked up to measure for any contractions, I feel anxious and afraid. Yes, that’s right, I’m being induced at this very moment, and hopefully in a few hours I will get to meet my daughter. Exciting right? It should be, but unfortunately our life is anything but normal. Let me start at the beginning. In December 2005, my seemingly healthy, beautiful son, Isaac, was born. At 2 months old, Isaac was diagnosed with familial Hemophagocytic Lymphohistiocytosis (HLH), a life-threatening condition affecting his immune system. We spent the next year fighting for his life. Isaac received treatments of chemotherapy and many other drugs for six months and had his life-saving bone marrow transplant at 8 months old. Now, he’s nearly 9 years old — a healthy and active little boy, and we feel blessed to have him. We waited a long time before having enough courage to try for another child. We knew that every pregnancy would hold a 25 percent chance of our baby having HLH. Finally we decided to trust in whatever God’s plan is for us. In 2011, I got pregnant, and at 11-weeks gestation, we had testing done to find out if our baby was also affected with the disorder. The results were not what we wanted. Our second son was also sick. Leland was born still at 39 weeks. Our hearts were broken, but we believe God must have had a plan, and we trusted in that. I love my child and will never forget him. I feel certain that one day I will see him again. Exactly one year and a week to the day we lost Leland, Elijah, our third son, was born — a beautiful, healthy boy who tested negative for HLH. We couldn’t have been happier. He will be 2 on January 21st. Now I believe all things happen for a reason. Sometimes we just don’t understand what that reason could possibly be. Maybe God has a sense of humor. In April 2014, we were completely surprised to be expecting a fourth child. While I had mixed emotions, my husband was elated. He was convinced it was a girl. I was more afraid than I’d ever been before. I had two beautiful children, and I didn’t want them to have to go through life with a sick child — constant hospital visits, waiting in sterile little rooms, being away from their mother, not being able to be close with their new sibling, traveling back and forth, staying in strange places. The stress of it all just seemed so unfair. My husband reassured me that no matter what, everything would be OK and we would do what we had to. I agreed, but I don’t feel shame for not being sure. This new life is going to change all our lives. It’s going to be rough, and while I have good days when I feel positive, I also often feel like falling apart and running away from it all. In August, we received the results of the HLH tests, and I knew the results before the geneticist told me. I knew deep in my heart this child would be sick, and I’m so sad to say I was right. What I wasn’t prepared for was for her to also tell me that my baby was a girl. That one was a shock! And for the first time during this pregnancy, I felt some happiness. I let myself smile, and I cried. This was meant to be. Things would turn out fine. I’m going to have a daughter, and I have to be strong for her. I need to remind myself that I’m human and it’s normal to not always know how to make the right decision. It’s OK to take time to think or freak out. We have hope for our daughter, who we’ve named Magnolia. And so, as we patiently wait for her to make her arrival, we’re completely content with our decision to have more children, and we pray to have enough strength to handle whatever may come our way. For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .