Stay Strong. Stay Strong.
Written by Invictus Member Rachel Ragosa

My name is Rachel Ragosa, and you may remember me from way back in 2012. I’m thrilled to be back at CrossFit Invictus! To put it lightly, life has thrown me a couple curveballs the last few years. I was honored when I was asked to tell my story. I hope it helps others who find themselves in a seemingly impossible life situation. I guess I’ll start from the beginning…

“There is something wrong with Charlie.”

I didn’t know it at the time, but that sentence would be the start of my entire life taking a very unexpected turn. My daughter Charlie was taken for an evaluation shortly after birth, for what I thought was just trouble maintaining temperature. I gladly took a long shower while my husband, Tommy, followed our daughter to the NICU. No more than 15 minutes later, Tommy walked in, tears in his eyes. I knew immediately that something tragic had just happened.

At 20 hours old, my daughter had fallen into a coma. We found out several days later that she had experienced a severe metabolic crisis and was diagnosed with an extremely rare disease, Glutaric Aciduria Type II (GA2). Her case was a severe one, and the prognosis of infants with GA2 is very poor.

Simply put, her body cannot use fat for energy, and she cannot process certain amino acids. She cannot fast, even during the night. In fact, going for more than six hours without food could put her into a coma once again. The doctors said she would not live longer than a year, and we were released home on pediatric hospice care. They told us she would never lift her head. They warned us that she would never walk and would likely be mentally challenged.

Charlie’s first year was difficult, to say the least. We endured month after month of hospital stays and a few very close calls. I lost myself in her diagnosis. I ceased to take care of myself. I ate horribly and did not exercise. Instead, I spent every waking moment researching my daughter’s diagnosis. I gained a significant amount of weight. I ended up with a blood clot in my leg that required surgery, and my blood pressure was always high. I thought that if I didn’t pour 100% of my energy and effort into taking care of Charlie, that she would die and it would be my fault.

Over the following year, she defied her initial prognosis and graduated off of hospice care. She began lifting her head, sitting up, crawling, and even began to walk. Cognitively she was far from mentally challenged. In fact, she was advanced in many areas. I finally felt as though I could start to relax a bit. I started getting out more, eating a bit better. I felt at peace with our situation and had the confidence that I could handle her needs. We went through 2015 without a single hospital stay. Life was good.

“They think I have Lymphoma.”

In February of 2016, the air was knocked out of me, yet again. My husband’s aching back and recent weight loss turned out to be Stage IV Non-Hodgkins Lymphoma. After the initial shock had worn off, I decided that I would handle this challenge differently than how I coped with my daughter’s diagnosis. I refused to lose myself again. I began to run on a regular basis and I went to yoga classes. I wanted to be strong enough to help Tommy through his cancer treatment. The doctors seemed optimistic about remission and so were we.

During the next five months, Tommy and I rallied. He stayed home from work to recover the best he could. There were bad days, and still a lot of really great days. There were many trips to the zoo, afternoons at the park with Charlie, and time with friends and family. We finished the five months of chemotherapy, and he went back to work. He was stronger, I was stronger, and we were thriving.

“The cancer pain is back. I’m so sorry babe.”

When my husband spoke those words, my entire world came to a standstill once again. We confirmed with a scan that the cancer had never fully gone away. I was crushed. When we went back to the doctor, there wasn’t that same hopeful optimism as before. Instead, his doctor referred us to the Bone Marrow Transplant Team. We learned about the process regarding stem-cell transplantation, and he had to endure more chemo to prepare for the transplant. This chemo hit him harder. Our good days were fewer and far between. But still, we pushed forward. I kept running. I kept making better choices. I kept moving for him and my daughter. I couldn’t give up on them or myself.

“I can’t wake Tommy up.”

I remember calling my parents one Saturday afternoon after I had hung up with 9-1-1. My husband had laid down for a nap with a headache. After two hours, I went to check on him. He was breathing very slowly and he was unresponsive.

Shortly after, we received news that his cancer had gone to his brain, and that was the cause of his comatose state. The oncologist informed us that chemo injected directly into his spine would fix everything. They said he would be back to himself within a week or two. I could breathe again.

To pass the time at the hospital, I would run up and down the stairs, I wanted to keep moving. My husband would have given anything to have his body healthy enough to run up the stairs. I tried to be strong enough for the both of us.

“Yeah. That. They. Yeah.”

Those were the first words I heard my husband say as he slowly came out of his coma. Over the next few weeks, Tommy slowly came to. He started to remember his name, who I was, and that he had a daughter named Charlie. He started finding his words, and although he wasn’t quite the same, I still loved him with all my heart.

When he was released home, I was cautiously hopeful that things could get back on track. Unfortunately, after about three or four days, the headaches returned with a vengeance. Fluid had built up in his brain and he needed emergency brain surgery that night. I walked the hospital, ran the stairs, and kept moving. Movement had become my solace from the stress of the ICU. I kept repeating to myself, “Stay strong. Stay strong.”

The initial brain surgery didn’t work, and he required a second a few days later. During this whole ordeal, he needed more chemo, as the cancer continued to spread despite the injections into his spine. This seemed to work. In fact, he started walking again. His personality was returning, and I felt like I was getting my husband back. I walked with him. I helped him with his physical therapy. We talked about our goals, our achievements, and a future that we didn’t believe was possible just a few weeks prior.

He was doing so well that he was discharged after multiple weeks in the hospital. We both cried tears of joy the entire ride home. He told me how proud he was. He was impressed at how well I held everything together in his absence. I made sure to tell him that it was his strength and positivity that was carrying me forward the whole time. We had an amazing few days together as a family.

“The chemo is no longer working.”

Within five days, the headaches came back. The doctors were out of options. I just remember walking in and seeing him on the ventilator for the final time. I held his hand, stroked his head, and told him how much he meant to me. He slipped slowly back into a coma. A few days later, my husband passed away due to swelling in his brain. Tommy passed surrounded by family and friends. He had a picturesque passing. It was about as beautiful as it could be.

When you see your loved one screaming in agony for weeks on end, death is a strange thing. It is a mix of relief and utter sadness. When his cancer kept spreading despite the chemo, I began to prepare myself for the worst possible outcome. I believe that helped me cope better, as his death wasn’t completely unexpected. However, I never gave up the hope that things could be better. I think that is what keeps me going now. The hope that despite my husband’s passing, things will continue to get better. People tend to treat widows like we are fragile people because of our loss. On the contrary, we move mountains. We already know what deep loss feels like and we aren’t afraid of it anymore. We are bulletproof. I feel stronger now than I ever have before.

From here on out, I have made a promise to myself to grow stronger physically, emotionally, and spiritually. Getting back in the gym has been a huge part of that. I am incredibly grateful to the Invictus community for welcoming me back with open arms after my four-year hiatus. I’ll continue to push forward each and every day with your help.

If you have read this far, you are probably wondering why I am telling you my story. I believe that personal growth comes from sharing perspective. Everyone has had challenges in their life. I have shared mine with the hopes that it helps someone going through a difficult time. I have been given an incredible opportunity to tell the stories of other members who have overcome impossible odds, survived a life challenge, and have continued to demonstrate Invictus mindset. We are the masters of our fate, captain of our souls.

Also Check Out…

Overcoming Obstacles In And Out Of The Gym

Transforming My Body And My Mind

CrossFit Saved My Life

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Nichole D
Nichole D
January 5, 2017 5:25 pm

Rachel!!!! I don’t know if you remember me but I coached some of the classes you came to when you first joined!
You are a very inspiring women and have incredible strength. I hope I can see you & Charlie at the gym the next time I am in town visiting. Thank you for sharing your story and for showing us what courage, strength and determination looks like.

Rachel Ragosa
Rachel Ragosa
January 6, 2017 11:24 am
Reply to  Nichole D

I certainly remember you! Next time you are in town let me know and I’ll make sure to be there when you are at the gym! Would love to see you!

Calvin Sun
Calvin Sun
January 5, 2017 5:13 pm

Rachel, thank you so much for being so open and sharing your story. I find your courage and strength to be incredibly inspiring and I hope that others do too. You truly embody an unconquerable mindset.

Rachel Ragosa
Rachel Ragosa
January 6, 2017 11:24 am
Reply to  Calvin Sun

Thank you for your kind words Calvin! It means a lot.

January 5, 2017 9:20 am

So terribly sorry for your loss; thank you for sharing this with us, Rachel. I’d love to know how Charlie is doing.

Rachel Ragosa
Rachel Ragosa
January 5, 2017 10:53 am
Reply to  Nathan

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She is doing amazing! We have gone more than two years without an overnight hospital stay! She may need a liver transplant in the future, but we just take each day as it comes! 🙂 Thank you for asking.

January 5, 2017 3:07 pm
Reply to  Rachel Ragosa

Wow. How wonderful! Keep on staying strong. Your story is going to impact a lot of people. Thanks again.

Beth Spearman
Beth Spearman
January 5, 2017 6:34 am

I am just sitting here awestruck at your strength and courage. I don’t have any words, really… Stay Strong Rachel. Thank you for sharing.

Rachel Ragosa
Rachel Ragosa
January 6, 2017 11:25 am
Reply to  Beth Spearman

Thank you so much for reading and the support! It helps me to keep going!

January 4, 2017 8:44 pm

Amazing story! Thanks for sharing!

Rachel Ragosa
Rachel Ragosa
January 6, 2017 11:25 am
Reply to  Noah

Thank you for reading!

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