Andrea Verdone Gorsegner

Infinite Love – One Family’s Childhood Cancer Story

Dan and I met in college through a mutual friend and married two years after graduation.  I was working as a photo editor/producer in NYC and Dan was working in a family business in NJ.  Fast forward five years and Hannah Rose was born, and after six months in an increasingly cramped NYC apartment, we built what we thought would be our “forever home” across the river in Rutherford, New Jersey.   Our little family was complete when Natalie Grace came along two years later.  Life was good and we were a happy family.  And then it all changed.

One weekend, just before her third birthday, I noticed Natalie was a little off. In addition to her loss of energy I saw pin size dots around her eyes which, for my kids, usually indicated a fever was on the way. In fact, the next day Natalie had a low-grade fever and when it didn’t break after two days, Dan took her to the pediatrician where she was diagnosed with a “summer virus.” Just two days later we noticed more of the tiny dots however this time they were showing up elsewhere on her body.  Other symptoms quickly developed, small bruises on her legs, her right eye began to look red, and she was having small nosebleeds.  We assumed this was the virus, but we decided that I’d take her back to the pediatrician the next day.

That evening was a rough one for our girl.  We could tell that she was so uncomfortable, moaning in what we now know was pain from the cancer cells. The next day I left a detailed message for Natalie’s doctor, and by the time I had reached my office she was already calling me back.   Within minutes, and without explanation as she didn’t want to scare me, she was telling me to bring Natalie into the office immediately.  I didn’t know what was wrong, but I could feel the tears welling up in my eyes as I picked up my bag, walked back to the parking garage and drove straight home.

Andrea Verdone Gorsegner and Natalie Grace Gorsegner

August 16, 2012: Diagnosis Day

Twenty minutes after drawing Natalie’s blood, the doctor told me that it wasn’t reading correctly on their machines and that she wanted me to take Natalie to the hospital for more testing.   She later told me that she knew in her gut what this was, but in that moment, she didn’t want to scare me.

In the hospital, they immediately put us in a room, drew blood and left to run tests.  Through it all, I held Natalie while she slept.  As we were waiting, I could feel wetness dripping down my arm.  I gently lifted her head and was shocked to see that Natalie’s right eye and nose were both bleeding.

Just then, several doctors and nurse practitioners solemnly walked into the room.  The doctor, who had taken Natalie’s blood in the ER was leaning against the wall, and I could see that she had tears in her eyes. Moments later another doctor, Dr. Steele, broke the news to me that Natalie had leukemia.  I was in complete shock and I truly don’t remember anything that they said to me after that.  Eventually everybody walked out. I called Dan and our parents, and from there our lives changed forever.

Natalie Grace Gorsegner

November 1 2012: Because she had to go to clinic multiple times a week and Natalie HATED being accessed for her port. Her doctor allowed her to be accessed once in the beginning of the week then they would let it stay in and they’d remove it at the end of the week.

It was six days from Natalie’s first symptom to her diagnosis of high-risk acute lymphoblastic leukemia. We were now living in our new normal and we were about to go through every parent’s nightmare.

The next day, while she was having her port placed for chemotherapy, the medical team brought Dan and me into a room and told us what the next two years of our lives would be like.  We went through a 50-page document page by page.  It was so methodical that it reminded me of the process of closing on the sale of our house; initialing each page to acknowledge our understanding and agreement. It was a surreal moment as our initials this time around represented permission for them to poison our child through chemo. Our lives went from being “Groundhog’s Day” predictable, to a life that was anything but.

Natalie Grace Gorsegner

February 16, 2013: Natalie learned quickly as to take her everyday meds (always wanting to do it herself), even though she hated how they tasted.

Our greatest concern was Natalie’s health, we would do anything to ensure that she got better, however our next worry was of a financial nature.  During that first meeting, the doctors suggested one of us stop working, as taking care of Natalie would be 24/7. With that, I walked away from my lucrative, decade-long career in magazines to be a fulltime “Momcologist” to Natalie. This was a financial jolt for us as like most American families, we relied on both of our salaries.  There was no doubt we would have given up anything for Natalie’s health, but the reality of our sudden financial change was terrifying.  Immediately, we knew we would not be able to afford to keep up with our mortgage and so we put our house up for sale the week after Natalie’s diagnosis.   It was a hard decision, but we wanted to get in front of our financial challenges and not have to face being underwater when all our focus needed to be on getting Natalie better.

Natalie Grace Gorsegner

February 22, 2013: One of many stays, but big sissy Hannah always helped Natalie through it.

In the meantime, a dear friend of ours had started a GoFundMe page to help us. We were still fairly new to Rutherford and didn’t know a lot of people.  But the news spread fast at the girls’ school and so many people generously contributed.  Through the GoFundMe page and other fundraising efforts like my parents’ extreme yard sales, $25,000 was raised for our family. That money is what allowed us to stay afloat until the house sold. We will always be eternally grateful for the love and support from these amazing and wonderful people.

During the first few months, we experienced equal parts sadness and anger.  As a parent, you wonder how did this happen? Did we do something to cause this? Natalie’s favorite nurse reassured me that nobody really understands how this starts, it wasn’t anything we had, or hadn’t done, and I needed to focus my energy on supporting Natalie.

Natalie Grace Gorsegner

March 8, 2013: We called her good days where she seemed like herself “Tutu days,” because she LOVED wearing a tutu every single day (even long before her diagnosis), however once she got sick she’d only put one on if she felt good. So for these pics she had actually put TWO tutus on!

Needing to feel in control of something, I began to transition my focus to learning more about childhood cancer.  It didn’t take long before I learned how underfunded pediatric cancer research is.  There are over a dozen different types of childhood cancer and, hundreds of subcategories.  In the past 25 years there have only been four new drugs developed for any type of childhood cancer.  As I continued discovering these ugly realities, my sadness started transitioning to anger. How could I have gotten this far in my life and not known childhood cancer is the number one disease killer of our kids in this country? The funding to help these children is only 4% of the National Cancer Institute’s allocated budget, while the other 96% goes to research for adult cancers.  I began to think about what I could do to help.

Natalie Grace Gorsegner

March 17, 2013: Aside from her diagnosis day, this was the scariest moment of our lives.

I had set up the Facebook page, Infinite Love for Natalie Grace, to keep family and friends up to date on what was happening with Natalie’s treatment.   Not only was this therapeutic, but it also allowed me to inform the public about childhood cancer.  The number of followers on Natalie’s page quickly grew to several thousand.

While we were in the process of packing up our house, and Natalie was in the thick of treatment, I had an idea. I posted a picture of us holding a sign that read, “Will you send us $1 for pediatric cancer research?” I hoped to raise a few thousand dollars for cancer research. Within hours, the post was shared a couple hundred times! Soon, we were getting dollars sent to us from all over the county and even internationally as well.

Natalie Grace Gorsegner

April 10 2013: Just another clinic visit for chemo and blood draws.

Excited by the response, we were motivated to keep it going. Our new goal was to raise $50,000 by Natalie’s fourth birthday in September – which also coincided with Childhood Cancer Awareness Month, this gave us five months to raise the money. I honestly didn’t think we would make our goal, but people were so connected to our family’s story.  By Natalie’s birthday on September 28th, we blew right past it and raised $110,000. Every single penny was donated towards pediatric cancer research.

After the success of that initial fundraiser, I committed myself full-time to raising these much-needed funds for pediatric cancer research.  Our 501c3 foundation, Infinite Love for Kids Fighting Cancer, was created and one by one our Infinite Love team began to grow.

Angelina and her brother Aiden

I also began to get more deeply involved with families affected by cancer.  Having been there myself, I understood the emotional and financial support these families needed.  As a result, while research is still a major part of Infinite Love’s goals, we also provide direct assistance to families.  We don’t just write a check and move on. We’re with them from the moment we meet until they no longer need us and even then, they will always be a part of our Infinite Love family.

Natalie Grace Gorsegner

October 3 2013: This was the result of what was raised with our very first “Will You Send Us a Dollar” fundraiser. This check says $98K but by the time it really ended we were at $110,000 and that funded our very first research grants. You can see those grants HERE.

Angelina was a ten-year-old fierce, spunky, and hilarious little girl who had been fighting neuroblastoma for half of her short life. Last December when we knew the end was near, her mom Danielle was on a mission to fill Angelina’s bucket list and one of her greatest wishes was to visit Hawaii.  Within a two-week period, Infinite Love put together an online appeal and raised over $20k for their trip. Weeks later, Angelina and her family were able to experience an amazing week in Hawaii.  Unfortunately on February 21, 2020 our world was shattered and a bit dimmer as sweet and loving Angelina passed away.

Infinite Love has researched treatment options for families, we’ve renovated backyards for children who are home confined because of their compromised immune systems, replaced expensive hot water heaters, built extreme tree houses, sent children to sporting events with VIP treatment, decorated hospital rooms and put together goody baskets for families returning from the hospital.  We’ve arranged family portraits and much, much more.  If there is a need, we try our absolute best to fulfill it.

Natalie Grace Gorsegner

November 12 2013: Shortly after we got home from her “Make-a-Wish” trip to Atlantis Natalie ended up with a virus that landed her in the hospital for a few days.

None of this would be possible without our incredibly generous donors, and the wonderful people who make up our team. Jim McCaffrey, Rachael Kanapka, Jeana Bloodgood, Emily Nikoo, Sue Funck, Stephen Lunanuova, Jeanine Burns, Susannah Haesche, Karen Rodrigues, Regina Misercola.  And my dear mom, Linda Verdone who’s been there since day one.  All these special people have their own fulltime jobs and families and yet they generously contribute countless hours of their lives. I hope that anyone reading this story will take the time to read about them as they are all truly amazing people.

As wonderful as Infinite Love is, we do have our challenges.   On a personal level, being able to keep myself emotionally in check is not easy.  In the seven years our team has been doing this, I’ve been to the funerals of EIGHT children.  Sometimes it’s too much to bear. But then I think about how these children fought. They did not “lose their fight with cancer” because they NEVER, ever gave up.  Even through the worst of it all, they continue to fight, live life and love.  These children are stronger than I’ll ever hope to be, so if they’re not giving up, neither will we.

August 9 2014: Ocean City. This was our first bit of family fun since Natalie had been diagnosed. It felt SO good to feel normal and to hit the beach every day.

The other challenge is the constant need to raise awareness and funds.  Because our mission involves children, many believe the funds are easier to raise, but they’re not.  We have wonderful loyal donors, but overall, it’s tough.  And now, the financial turmoil caused by Covid19 makes fundraising harder than ever.  The cancellation of our 2020 in-person fundraising events has meant a loss of over $300,000, and we’re predicting that 2021 could be even worse.   As a foundation, we are struggling financially and currently we’re relying heavily on our “Monthly Giver Club.” The recurring donations that people give have been critical to our financial well-being and enabled us to continue helping our Infinite Love families. During the month of November, for all who join our Monthly Giver Club, we’ll be holding  raffles every Tuesday night at 7:00pm EST on our Infinite Love Facebook page.

September 24 2020: Natalie turned 11-years-old 4 days later : )

I’m often asked about my passion for Infinite Love.  While I found my charitable passion by accident, others searching for their own passions can choose a cause and make a difference. Just pick a cause that’s near and dear to you and do something for it because there are so many who desperately need your help.  Don’t think that you as an individual can’t make a difference. You absolutely can–simply utilize your daily occupation or any other skill you may have and think about how to apply those skills to help others in need. Your contributions don’t always have to be of a financial nature.

Additional resources:

Click HERE to read first-hand reviews of Infinite Love.

Click HERE to learn more about Infinite Love’s “Monthly Giver Club.”

Click HERE to see an itemized list of the research that Infinite Love has funded.

Click HERE to sign up for Infinite Love’s 1st Annual “Spin 4 Kids” Peloton themed fundraiser.

Click HERE to see Infinite Love in the press.  From the Asbury Park Press to People magazine, Infinite love has officially made a splash.

Photos courtesy of Andrea V. Gorsegner and Magdalena Studios

 

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2020-04-15

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