The Story of Today

“One hundred years from now we will be gone. But the stories we leave will transcend time.  These stories are the culmination of the very best this world has to offer. They’re what you get when you push through the smokescreen to find what matters.” – Eddie Pinero

It’s easy to find what matters, just ask Alyssa Marshall. She started a business in February of 2016 and it literally changed her life, especially when life changed.

 

Fast forward to about a week ago, March 5th of 2018, when Alyssa paid a visit to her USHEALTH Advisors regional meeting in Nashville, Tennessee. “I came back to visit and nobody cried until the very end,” says Alyssa. “It was wonderful to see so many smiles and I totally processed all of it and took it in.  I told my husband it was so great to go visit and not a single person asked,’ when are you coming back?’ “They all said, ‘we love you, we are praying for you, we miss you,’ but no one asked when are you going to start selling again? I told my team leader Amy as soon as I get back I want to start building a team again, she said, ‘we are not having that conversation right now. You take care of what you need to take care of.’ It reaffirms I’m in the place I am supposed to be.”

What Alyssa is taking care of is what matters… her six-year-old daughter Amelie.

The challenge began shortly after the most recent Christmas vacation with the family up in Maine. “We came back home on January 3rd,” says Alyssa.  “Amelie’s story is that she is a really energetic kid, she does gymnastics and was complaining on-and-off about her wrist hurting. It was about a week later, on January 8th, she came home from school and my husband was taking off her jacket and asking Amelie about her day  – we could see her wrist was super-swollen.”

‘I said baby, what happened?’ “Amelie is a people-pleaser, she doesn’t want to stir the pot and make life difficult for others, so she doesn’t complain much, but her skin was swelling and we could tell it looked uncomfortable, so we took her to the urgent care center.”

The x-rays raised concerns for the doctor on-call. Though he said it wasn’t a fracture or a broken bone, but as Alyssa remembers,”in a “sweet but severe tone, he said if it was his kid he would not wait around for any referrals, but instead make an appointment with an osteopath first thing tomorrow morning.”

The next day once the staff at the specialist’s office read the radiologists report, they set up a quick appointment. Alyssa says when the doctor walked in she looked very serious. “What we are seeing looks exactly like a malignant tumor,” she said. “It could be an infection, but probably a tumor growing in your daughter’s arm. And understand there is nothing you could have done about it and you didn’t bring her in here too late.”

The cancer diagnosis was unexpected and frightening, but now it was time to get moving and make sure the necessary foundation was in place to begin treatment… it was.

“When I joined USHEALTH Advisors I got a health policy for my family,” says Alyssa. “I had no clue, except for having two babies, about how insurance worked. But when I got this job I bought the policy and the supplements, not just on the adults, but on the kids as well, which most parents don’t do, they don’t get critical illness supplements on their children.”

It was a shrewd move because cancer is a disease which doesn’t age discriminate – and life can change in the blink of an eye – as it did for Alyssa, her husband Naphtali, daughter Eloisa and of course Amelie. The supplemental critical illness policy helped to pay-off the deductible, so the family could simply focus on the journey ahead one day at a time – this next chapter in the story of their lives.

The days and weeks after the diagnosis have been filled with lots of testing and treatments. The biopsy of the tumor showed Ewing’s Sarcoma, a very rare type of cancerous tumor that grows in the bones, or the soft tissue around the bones.  This cancer only affects about 200 people a year and for five-year-old Amelie, it presented itself early in life, since it usually affects people a bit older, from the ages of ten-to-twenty. The treatments include chemotherapy, radiation, and surgery. The chemo treatments started almost immediately.

Stay in the past you are depressed, worry about the future you are anxious, remain in the present and you are at peace. What you focus on helps craft your story and for Amelie, her story helps keep her calm.

“It’s been hard,” says Alyssa. “What Amelie started doing, especially after the first big day of major tests was to ask me, ‘mom could you tell me the story of today?’ It’s really me just telling her with my words and her looking into my eyes about what happened today, that the big things aren’t really big and scary, it helped her fill in the blanks for that day. Early on, when Amelie had the port inserted into her chest, she would be sedated and wouldn’t know what had happened, but she wanted to know. Or even on bigger days of testing and treatments, (like the night of this interview and another round of inpatient chemotherapy), she might ask me to tell her the story of today… walk her through it, tell her it’s OK, put a positive spin on all of it and not think about the scary things she might have to do.”

Throughout this process of trying to get Amelie better, the periods of inpatient chemo treatments, the back-and-forth to the hospital, the challenge of trying to keep a normal life for their other younger daughter Eloisa, Alyssa says it’s been God, community and her USHEALTH Advisors family that has kept her family-centered – and paying attention to the small miracles happening every day. Miracles which began even before Amelie’s illness.

Alyssa explains: “We moved from Chicago to Nashville nearly four years ago because the cost of living was cheaper – and we had $70,000 in debt. I tried to start a photography business but it was still a struggle. I prayed about it and prayed for a job that I could earn enough each year, let me make my own hours, be there for my kids and step back if I needed to and not feel guilty about it. I interviewed with Amy Mauk at USHEALTH and then went to work. I “10-X-ed it”, even while raising a 9-month-old and a 4-month-old and did $100,000 in sales in ten weeks. I’m a relationship person, and if you buy the person, you buy the product.” In just about a year-and-a-half the family paid off all the debt and started putting money into savings, which served as a cushion when Amelie was diagnosed in January of this year and Alyssa needed to step back to her most important role as a mom and be there for her daughter.

“My USHA team, they are amazing,” says Alyssa. “Amy Mauk might be the most generous person I’ve met in my entire life. She set up the GoFundMe account and a huge goal of $150,000. When I told her that’s too much, she told me you don’t know what people want to give, or what you might need. My husband and I are missionary kids, so we grew up in families that had to ask for money to support the church and the mission. So it felt like a lot and we don’t want to burden people. Yet it’s so amazing to have a work-family that is totally a family. Throughout this company, there have been personal losses and challenges, but so much loss has only brought us closer together.”

So far in three months $32,000 has been donated to the GoFundMe account, (https://www.gofundme.com/ameliemarshall). A USHA team bought an iPad for the family and countless others have contributed.  Amy says another mom who works for the company in Florida reached out to her immediately to say she had a child with cancer, offering some important tips. “Once you have a kid with cancer you realize you don’t know that many families who have kids with cancer,” says Alyssa.

Yet through this illness and the inpatient treatments, the family has now met people dealing with a similar situation. Amelie has made several friends, including Chivanaye, (Naye), who is also going through treatment at the same time. “It really helps,” says Alyssa. “We’ve learned to tell Amelie the night before her next round of chemo treatments, that it’s going to be alright, especially if Naye is going to be there. We tell Amelie, the sooner you are done, the sooner you can play with Naye. Yes it sucks, but you have a friend. There’s always a BUT to everything now. We are all here under terrible circumstances, BUT we are all family. For this latest round of treatment we were supposed to come in two days ago, BUT we couldn’t, so we didn’t have a dinner scheduled for the night we arrived in the hospital. BUT we have an awesome Facebook community of nearly a thousand people, (https://www.facebook.com/groups/ameliestribe/), so we were able to post a request for dinner so people have the opportunity to reach out and help, because so many want to, and we got dinner delivered. These people are so thankful to join in our story of today and be part of it. That is so awesome.”

 

Amelie’s illness has also taught Alyssa so much about life and what can happen at any given moment, as well as the true meaning of blessings.

“How audacious is it to think we have all this control?” says Alyssa. “You give yourself the illusion you have control, then watch it be taken away from you in one fell swoop. But my biggest takeaway is I’ve learned that God is not there because of the amount of blessings you have – because we have had a lot of blessings in the past year – I believe He’s here because of how loved and cared for we are in the middle of the darkest nightmare any parent can have. I think that’s the biggest lesson I never want to forget.”

The Marshall family has also become very involved in trying to support awareness about funding for different cancer treatments since less than 4% of government-funded cancer research goes to pediatric research – therefore children are subject to painful treatment options that date back all the way to the ‘70’s and ‘80’s.

There’s the story of today and then there’s the story of tomorrow… yet to be written. The prognosis for Amelie is promising.

Pre-cancer days with Dad

“The bone marrow biopsy came back negative,” says Alyssa. “So the prognosis is good, fighting just the single sarcoma. There will be surgery in April to remove the bone and growth plate in Amelie’s wrist and replace it with the fibula bone from her leg. If all goes well there will be four-to-five months of chemo and then hopefully all done… and cancer-free by this Christmas. The long-term is in the future, as Amelie grows she will probably need more surgery to modify and fuse the bones to get them to work properly. In her teenage years, we will revisit the conversation about what is best.”

But that’s for the future. For now, the family is focused on what matters… the story of today.

Until next time, thanks for taking the time.

Your Storyteller,
Mark Brodinsky