Four years ago, Bernadette Catrabone collapsed after trying valiantly to make it through her weekly workout. As a former athlete, she believed she just needed a “tune up” when she was rushed to the hospital. That was not to be the case. With her doctors and husband at her side, she was told this was not the “lack of iron and other vital nutrients” she thought she had, but was instead a deadly Aplastic Anemia. Since then she has battled the failure of her first treatment, spinal meningitis, swine flu, four cases of pneumonia, three instances of Graph vs. Host, and constant colds.
September 2013 will mark the five-year mark of her illness. Five years could mean an official pronouncement of remission, and every day until September will bring her one day closer to that landmark. And there will not be a day where she won’t think about it.
After being diagnosed, Bernadette went numb. You can imagine her disbelief. But her next instinct was “fight mode.”
The specialists at the Cleveland Clinic told her she had two options.
1. An immune suppressive therapy consisting of:
A) Antithymocyte globulin (ATG) — a drug that targets a type of white blood cell called T cells. T cells are an important part of the immune system. T cells direct the rest of the immune system when to attack foreign cells such those that cause infection. They also help in the attack.
B) Cyclosporine — a drug that targets T cells.
C) Methylprednisolone — a drug that causes the immune system to make fewer antibodies and that is used to reduce the side effects of ATG.
This treatment would last for a week in the hospital and then she would be released to recover in hopes her immune system would rebuild on its own in the months to come.
2. An allogeneic bone marrow transplant:
To prepare for the transplant, you are first given chemotherapy, radiation therapy, or both. This treatment kills your unhealthy stem cells. It also kills the cells that make up your immune system which keeps your immune system from rejecting the new healthy stem cells you will receive.
Once you are ready, the doctor will infuse healthy stem cells from a donor into one of your veins. These cells travel to your bone marrow and begin to grow and make the healthy blood cells your body needs. This process is called engraftment. Until the donor cells have engrafted, you stay in the hospital. You then have to stay secluded for 100 days.
“Clearly to me, the choice was obvious–ATG. The less time out of the hospital, and the quickest time back on my feet, would be my choice. Anyone who knows me, I have a ‘fix it and move on’ mentality. Little did I know, this was bigger than that, and my journey was just beginning when the ATG treatment failed,” said Bernadette.
So Bernadette now faced a bone marrow transplant. But who would be the perfect match? Well it turn out to be her sister. Not only did her sister give her precious life-saving bone marrow, she gave her love, quit her job, and became Bernadette’s children second mother.
Bernadette was amazed, “Our sisterhood was never tested until March 16, 2008. After the ATG procedure was over, I came home on a Sunday night, telling my husband, ‘I can’t do this alone.’ The next morning, I called my sister Erica at 6:30 a.m. and asked her to come care for my children, my household, and me. She took over my crazy role…. as housekeeper, mother, caregiver, banker, school volunteer, etc. and without a thought, Erica quit her job and was knocking at my door at 7 a.m. Who does that? Who just walks away from their life and take over someone else’s? School, kids, dog, and all? This is a love I have never known.”
“It wasn’t until a friend asked me, ‘Are you going to make a video?’ Perplexed, I asked them ‘For what?’ He replied, ‘For your children.’ It was then that I said to myself with overwhelming determination and prayed until my knees bled, ‘I am not ready.’ I am not ready to leave my job as a mother. I cannot leave my children. They would be without a mother for 100 days but they wouldn’t be without a mother forever. It wasn’t a matter IF I was coming back from the hospital, it was WHEN. I made that pledge. The next three years were trying, not just on me, but also on my children. My eldest understood, but didn’t want to; my youngest didn’t understand but wanted to.”
“While I feel heavy when I think about what my children have been through, I feel this experience has strengthened them in different ways. Whether they learned to be more loving, more patient, or less confrontational and loud, quiet trauma shapes our children in so many ways, and I am hoping they can look back and say their mother was a fighter, a loving one, and she never quit. If I can pass anything on to them, I hope that is it.”
Bernadette also found strength through Brené Brown’s book, The Power of Vulnerability. “Her lecture about being whole-hearted … about embracing vulnerability … willing to breathe through the heartache, the sadness, the shame and realizing that it is also the birthplace of joy, belonging, love, and to surrender to it and walk into it was such an important lesson for me,” she said.
Bernadette learned three important lessons from Brown.
• Courage. Telling who you are with your whole heart (hence the whole-hearted), realizing you are imperfect, and not being ashamed to admit it.
• Compassion. Be kind to yourself. If you don’t, you cannot be kind to others. Love with your whole heart, even when there are no guarantees. Practice gratitude and joy.
• Connection. In order to be connected to yourself, you have to be authentic, which will allow you to connect with others. We all need connection… family, friends, colleagues, but you cannot have that if you are not authentic.
Every year Bernadette is away from transplant is the chance to be “cured” and in remission. Her four-year check up went well, but she will spend the rest of her life with a compromised immune system.
But Bernadette said with force, ”I AM NOT GOING TO STOP LIVING. Every day is a gift, and every morning… I can’t wait to unwrap it!”