I’m just a Dad with Aplastic Anemia
This is my story. And it’s a little long, but I hope it’s worth your time. Here’s a short video of my story.
My wife Angela and I, married 19 years, have 4 children (3 girls and 1 boy) ranging from 8 to 16. They are at a very impressionable age – an important time to teach your children the ‘lessons of life’ and how to be productive members of society.
And also at an age where they may not understand the severity of my condition.
That’s because if you look at me, I look relatively normal (except for the 40 pounds I lost in the hospital). My symptoms aren’t readily apparent, and I try to have as normal a life as possible. I ran a 5K with my entire family a month before my diagnosis, and felt normal until January 3, 2014.
Right after New Years, the entire family was taking down the Christmas lights outside on a Saturday. I had to stop several times and rest…almost passing out. I knew something was wrong, but my wife thought I was just trying to get out of taking down the lights.
I thought it was my heart, so I had a complete work-up by my cardiologist on Monday. On Tuesday, he called me with the results of my blood test. “It’s not good news. You have something called ‘pancytopenia’, where all 3 of your blood cell levels are critically low: red blood cells, white blood cells, and platelets. That’s typical of a condition called Aplastic Anemia.”
As physical therapists, both my wife and I had heard of Aplastic Anemia, but didn’t know much about it (but we obviously have become self-proclaimed experts).
But even scarier, my doctor then said, “You need to go to the hospital right now to get a transfusion and bone marrow biopsy.” My wife and I quickly put some things together and arranged for our kids to be watched that night. But an emergency bone marrow biopsy???
I wasn’t scared. I wasn’t really worried (except to find out which hospital my new insurance would accept). I was concerned, though.
I was concerned about my family. First and foremost I wanted to be sure that my wife and children would be OK through this.
I really wanted to make this terrible experience into something positive, particularly for my children. I wanted to use my battle against the disease as something that’s hard to teach as a parent: courage, strength, patience, endurance. Perhaps even life-changing. I didn’t want them to see me as a weak, whiny, complainer in a bad situation. I had to be strong to survive this and be an example for my kids in battling life. And use a little humor along the way.
“Why me?” is a question that I don’t really ask myself. I think that question should be, “What’s God’s plan for me? What am I supposed to do with this condition? How can I make this experience positive?”
So I decided that night to make this a learning experience for my kids and others. I created a blog, www.bonemarinara.com to inspire, motivate, and educate people while I battled AA. (If you’re curious about where I got the name, visit the “About” page on the website!)
I didn’t expect to get so many compliments on the blog about how inspiring and humorous it was…but that was exactly what I was trying accomplish! That in itself motivates me to search for everyday lessons in my fight, find the positive in even negative situations, and share my experience with family and friends in an entertaining way.
As we left for the hospital that first night, we tried not to scare the kids. The diagnosis wasn’t confirmed…but in a few days, we explained to them that I had ‘severe’ AA.
Aplastic Anemia is generally an acquired condition, although it can be inherited. 75% of acquired AA cases are idiopathic (meaning the cause remains unknown). AA can affect any age, but is more common in younger males.
So why me? A 46 year old father of 4 with a PhD is suddenly sick? Everyone thought I acquired it by eating some crazy food in another country (I travel extensively internationally). But my cause remains idiopathic. In these cases, the cause is usually an auto-immune attack. That means that my own immune system is killing my bone marrow because it thinks it’s foreign for some reason.
The symptoms are fatigue and early exertion (from low red blood cells), infections (from low white blood cells), and easy bruising and bleeding (from low platelets). These 3 types of cells are all produced by your bone marrow. The diagnosis is confirmed by the bone marrow biopsy. Mine showed that my bone marrow is 95% fat.
Yes, “fat.” I have only about 5% of true bone marrow. My wife commented, “You’ve reached a new level of obesity…even your bones are fat!”
Humor is sometimes the best medicine. I easily found that it’s much better to try and make people smile, particularly those caring for you like nurses. It makes them feel better, and makes me feel better, but I know that it’s not always easy to have a sense of humor.
I have ‘severe’ aplastic anemia, meaning my cell counts are extremely low. I need weekly transfusions of blood and platelets. It’s not easy to tell jokes when you are on your 4th needle stick of the day between blood tests and transfusions.
It was at this point that I began to ask for “Mojo”…popularized in the Austin Powers movie, our “MOJO” generally refers to a mysterious power that allows someone to be successful and gives talent. Before my biopsies, I got MOJO from around the country. Austin himself would have been proud.
The standard treatment for severe AA is to “kill off” the immune system and hope it “wakes up” again to start producing those cells. In order to kill the immune system, they infuse an IV medicine derived from a horse (yes, a horse!) over the course of 4 days followed by 6 months of chemotherapy (cyclosporine).
That works about 70% of the time, but less in older patients like myself. I have a 50-50 chance of it working. Luckily, I received my treatment at the National Institutes of Health in Bethesda, Maryland as part of a clinical trial.
Being a PhD, I felt somewhat obligated to participate in the study as a subject rather than a researcher. Plus it was being done at a place with tons of experience. I found many scientific papers authored by doctors at the NIH and my doctor there, Dr. Neil Young, actually pioneered the protocol.
Bethesda is pretty far from home. It’s a 2 hour plane ride. As much as I was eager to get into the study, my main concern was my family. While Angela joined me the first few weeks in the hospital, I wouldn’t be able to see my children and I wanted to be sure everything was in order.
Paying the mortgage. Cleaning the fish tank. Completing the taxes. And all the accounts and passwords for our checking, retirement, insurance, and of course, Netflix. I made a notebook with as much information as I could find. I wanted to be sure Angela could easily find things she needed that I typically took care of in case things went downhill. (That’s my cautious optimism coming out.)
Angela had organized an army of family and friends to watch our kids while she was with me in the hospital, getting them to school, being sure they were fed, and keeping up the house (most of the time). We were very blessed to have a great support network and Angela did an unbelievable job coordinating everything. And she did an incredible job taking care of me.
After my 3 weeks in Bethesda, I come home only to be back in the hospital the next day with renal failure, liver failure, and sepsis. Literally in one day, I was at death’s door. The doctor said, “It’s hour-to-hour for you right now.” That’s when I started to get worried. Not scared, but worried that I wouldn’t make it. I also had a painful rectal abscess that forced me to stay in bed. I was in the most pain I’d ever endured. But I battled through it with Angela at my side. She literally saved my life.
I spent another 3 weeks in Our Lady of the Lake hospital before returning to the NIH for 3 more weeks for more treatment. Because of my condition, I had to fly a life-flight jet to get to Bethesda. Angela was again with me and again saved my life and gave me the strength to get through the various treatments and exams. She was literally an ‘angel’.
During my 2nd stint in the NIH, I received 4 rounds of ‘granulocyte’ infusions to battle the various infections I had acquired during my sepsis. In addition to my rectal abscess, I had even developed fungal pneumonia. Things were not looking good, and the treatment for my AA would be on hold. I ended up having surgery for the abscess. But as my doctor said, “Those granulocytes saved your butt!”
I finally returned home after 4 weeks at the NIH. While it’s great to be home, I have to be a ‘germophobe’ at home to avoid any infection. So if you see a bald guy with glasses wearing a surgical mask, it’s probably me. Oh, and you might not recognize me after losing 40 pounds on the “Tramua Diet” and getting a great tan as a side-effect of the chemotherapy.
At this point, I’m getting weekly transfusions, usually platelets. They are the last cells to “come in,” so I have a greater need for platelets than blood. I hope you consider donating platelets or blood regularly.
At my age, and with my situation, if this treatment doesn’t restore my marrow, the next step would be a bone marrow transplant.
That’s where you come in.
I know what you’re thinking…”No way! That sounds painful!”
But it’s really not. It only takes a simple mouth swab to see if you’re a potential donor. If you are a matched donor, then it’s as simple as giving your blood. Very rarely do they actually take your bone marrow. So when you think about your ability to save someone’s life, doesn’t that motivate you?
It may not even be saving my life. I’m asking for bone marrow donors as well as blood and platelet donors for anyone who needs them. Aplastic Anemia, Leukemia, bone and blood cancers… I didn’t know how many different diseases need these life-saving products only you can give!
It doesn’t matter what your blood type is; anyone can donate. Most importantly, we need to increase the number of people in the bone marrow donor registry for anyone in the country who needs a transplant. That will increase the chances that someone in need finds a “match.” Matching bone marrow donors and recipients are essential for the transplant to be successful and to minimize complications and side-effects.
So, I’ll leave you with some cliché’s from my experience:
- Attitude is everything. Stay positive, strong & courageous.
- Prayer can be a powerful thing. Use it.
- Be patient and pro-active. That makes for a good patient.
- Exercise is medicine. So move as much as you can.
And with one of my favorite quotes from CS Lewis:
“The magic is not in the medicine, but in the patient’s body.”
Thank you to everyone for your continued thoughts, prayers, and MOJO!