Saturday, April 4, 2015

Erica's Heart

I love the story of how I met Erica Shea, although until now I have shared it with only a few people. It was the Saturday after this past Halloween and I was in the mood to purge stuff from my house. It's an urge I get often -- to simplify and, like my friend Katie says, prove that less is more. Anyways, I figured it was time to get rid of the kids' old Halloween costumes. I had been saving them in hopes that one day we successfully adopt a third child but I figured that by the time that happens, it would just be easier to buy him or her a new costume.

I laid out the costumes on my living room floor, took pictures of them, and posted them to my town's yard sale page on Facebook. Almost immediately, a young woman named Erica Shea commented and said that she wanted all of the costumes.

I recognized Erica's name because I had followed her story through the town newspaper. She was a fellow cancer survivor and I had been so taken by her story that several months prior I had shared an article about her on Facebook and begged people to become organ donors.

Erica had been diagnosed with Hodgkin's lymphoma when she was just 22 years old. As a result of her aggressive chemotherapy regimen and, four years later, a complicated pregnancy, Erica fell into heart failure. In December 2013, Erica was placed in a medically induced coma after she was diagnosed with sepsis -- a critical condition that can precede organ failure. Erica underwent open heart surgery in January 2014 so that doctors could insert a ventricular-assist device (LVAD) that would support Erica's heart function and blood flow. At that time, Erica was also placed on the transplant list. For the last 16 months, she has desperately awaited a new heart.

In the meantime, life has not been easy for Erica or her husband (Dave). Erica has been in an out of the hospital for countless different reasons while Dave has worked as many overtime hours as possible to bring home enough money for Erica's medications and everything else their family needs. Erica wants to work but given all of her medical appointments and limitations, it's next to impossible. So Erica has done all she can to use her photography skills to help her family. (In fact, I hired Erica to take the "author photo" for the back of my book not only because she's great at what she does, but because I wanted Erica's name on the cover.)

One of Erica's hospitalizations occurred over this past Halloween. Erica was stuck at Tufts Medical Center while other moms and dads took their kids out trick-or-treating. The nurses at Tufts arranged a very sweet version of trick-or-treating for Erica's son (Ryder), but as Erica said, it just wasn't the same.

As she and I exchanged messages on November 1, 2014 about how I could get her our old costumes, I finally told Erica that I knew her story, that I prayed for her (in my own way), and that I was so sorry cancer had done this to her. Erica maintained the most positive attitude about everything. In fact, she seemed giddy as she told me that wanted all the costumes because she was going to try to make up the holiday she missed by dressing up with Ryder in the week ahead. I loved her energy and the fact that she wasn't going to let the holiday pass without celebration. I just wished so badly that she could have the trick-or-treating part with her three-year-old. Even I got that on my most awful Halloween.

The trickier part, however, was that Erica was scheduled for more tests that upcoming Tuesday and bad results on those tests would mean another hospitalization. There was a small window -- Monday night -- and I had an idea.

I explained to Erica that Brian and I had somehow landed a house in what I am convinced is one of the most generous neighborhoods on earth. I asked her, "If we could arrange for another Halloween, would you want to take Ryder around?" As much as I wanted to do this for Erica's family, I expected her to say No. But Erica did the best thing ever -- she said Yes! And just like that, with one Facebook post to my neighborhood page, over twenty houses near mine redid Halloween for a three-year-old they didn't even know.

When I got home from work on Monday November 3rd, Brian had the kids dressed up in costume again. Teddy was a hockey player and Annabel was wearing her PawPatrol Ryder sweatshirt (Brian had made her a little badge, too). Dressing up as Ryder from her then-favorite TV show was her idea after she learned that Erica's son was also named Ryder. I just loved that.

The next hour or so was one of the most precious hours of my life. I had the pleasure of pushing Erica's wheelchair while Dave took Ryder up to my neighbors' front doors. As I stood back and watched this amazing group of people make Halloween again, I was in awe of the goodness in the world. Not only did my neighbors fill the candy bowls again, but they gave Erica hugs and cards and best wishes. One of my neighbors who had taken down her Halloween decorations put them back up again. Others put on Halloween t-shirts and costumes. I can't lie -- it was kind of magical.

Since that awesome November Halloween, Erica and I have kept in touch. But why do I tell her story now, you may ask. Because I feel helpless and this is the place I turn when I feel that way.

*   *   *

In order to do everything he could to help his family, Dave worked hard last year. He earns $19 per hour as a carpenter and earned around $50,000. Much of what he brought home went straight to caring for Erica, but the Massachusetts health insurance program didn't seem to care. Because today Erica learned that on April 30, 2015, because Dave earned slightly more than the qualifying number, she will lose her current health insurance coverage. With a lapse in coverage would come the most devastating blow -- Erica would be removed from the heart transplant list. 

There are other options for Erica, as she explained to me when we spoke today. But those options are simply not viable. She could get onto a health plan through Dave's work but it will cost them $600 per week, which would be Dave's entire paycheck. Erica is ready to go to work to help, and she has explored working on an assembly line in a factory. But as I told her last week, I cannot fathom her doing that job with the LVAD pack, shortness of breath, and all of the other crap she has to endure. There has to be another way. 

Let me be clear that this post is not an "ask" for anything. I do not ever want to use this space for favors. Instead, this post is about awareness and about hope. 

I want people to know that the brutal effects of cancer don't end when cancer goes away. The medications used today, while often effective, can be extremely harsh. They can leave people like Erica with a heart that no longer pumps enough to keep her alive. We need to do better and I am so hopeful that great scientists and doctors are in labs and hospitals right now trying to do just that. Unfortunately for Erica, however, the damage is done. 

Erica's story is also a great example of why I named my book what I did. Perhaps better than anyone, Erica knows what it means to have hope. But on April 30th, no matter how much hope the whole world may have for Erica, she will lose her place in line for a heart if she is dropped from MassHealth without any other insurance. We have to do something more. I wish I knew what that was, but I don't. So I'll do what I know to do. I'll write. 

Over text today, Erica told me something I may never forget. She said that her illness has never made her feel helpless -- "not cancer or heart failure." "But," she explained, "feeling like all my fighting was for nothing if they are going to cancel my insurance is so discouraging." It sure as hell must be. 

I wish my neighborhood could help solve Erica's health insurance problem as easily as we threw together another Halloween. But unfortunately we can't. I guess all we can do is pass along Erica's story to anyone who may be able to help Erica navigate the health insurance system through this nightmare. Because she cannot lose her place in line for a new heart. Ryder's next Halloween with his mom depends on it. 

Erica after having internal defibrillator placed -- June 2013

Ryder Shea
Pre-op for LVAD surgery

Right before surgery to place the LVAD 

Erica and Dave -- May 2014

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