Bernedette-An Angel With Broken Wings

My name is Tina (Christine). I was enjoying the music at a bluegrass Shindig in Wind Gap, PA, on a warm, sunny September day. A woman, who I had noticed earlier because of her beautiful hair with long, flowing curls, approached me. She asked to take my picture. Puzzled but without hesitation, I agreed. Photo taken, she explained to me that her friend had dared her to ask for my picture.

Her name is Bernedette Fitzsimmons Marques. She explained she was normally quite reserved but wanted to prove to her friend that she could win the bet. I told her I had wanted to stop her earlier and compliment her hair. Without hesitation, she said it was a wig. Matter-of-factly, she mentioned she was terminal with cancer. We hit it off immediately and chatted for quite awhile even taking a selfie together.

When I saw my friends later, I told them about Bernedette and our meeting. She was such a beautiful person and I was saddened to think I would never see her again. However, later that evening I met up with her around a campfire jam where we picked up on our earlier conversation and traded photos by text. A wonderful friendship began!

Ten years earlier, Bernedette beat cancer in her reproductive organs and stomach with treatment and surgery. Two years ago she had major back surgery for degenerative disc disease. She had three discs removed and plates fused. She became disabled because of her debilitating back condition. Unfortunately, the surgery did not slow down the degenerative progression of her spine. Physical therapy, acupuncture, and pain management did not work to ease the pain. Her spine is too soft for any additional surgery.

Bernedette has a long history of volunteering and aiding others. She was nominated and won countless awards for her volunteer efforts.

In 2016, Bernedette was awarded Volunteer of the Year for her work in Bergen County, NJ. The praise from the director of the facility was clear: "You are an amazing woman with the purest of heart". After a month of joining the facility family, programs being cut or in jeopardy of being cut were no longer in jeopardy and a few were reopened thanks to Bernedette's work. Besides volunteering as a head group leader for five different groups, she selflessly provided care and help to others.

Bernedette is amazing in her many acts of kindness. These are just a few. She:

Visited cancer wards weekly to bring smiles to children

Gave children things they never had such as flying a kite, Christmas in June, a prom

Joined and stayed with patients in the emergency room

Manned hotlines

Assisted women and families in abusive relationships to get help

Lent her efforts in fundraising for prominent foundations such as St. Jude, Make-A-Wish, and Harley Davidson

Visited terminally ill patients bringing cheer, hope, happiness, laughter, and fun

Single-handedly made wishes come true for terminally ill patients

A grief-stricken mother conveyed "My daughter passed away and she wanted to be a butterfly. I don't know how or where but Ms. B got butterfly wings for my baby to be sent to eternity in."

After beating cancer for the first time, Bernedette was diagnosed with a new cancer in February 2022. In their June 2022 newsletter, the cancer center where Bernedette became a patient, printed "We are shining a spotlight on one of our patients who continues to go above and beyond to help other patients and employees." Bernedette Marques was getting treatment for Stage 4 Non-Hodgkins Lymphoma when a few weeks later, she was diagnosed with a malignant tumor in her bladder and two in her stomach. "It's rare to be fighting different cancers at once", states the newsletter.

The cancer center noted that although experiencing all the mental and physical agony of having cancer, Bernedette, since her second day of treatment, came in smiling. She brought little presents for fellow patients happy to see them smile. Her love for Mickey Mouse shows daily. It was not unusual for her to wear Mickey Mouse ears or a Mickey Mouse or brightly colored shirt when coming into the facility for her own treatment. "I can't change the world, but if I can make one person smile and brighten their day, I'm good with that."

Bernedette gave out her personal phone number to patients telling them to call day or night. Bernedette set up what she calls a "You're never alone system" where she organized interested patients with their phone numbers and hours they are available. "From all of us thank you Bernedette Marques you impacted everyone of us from your fellow patients to faculty. Your warm smile, positive vibes, kind loving heart is rare. You don't think of yourself first or ever. You're happiest doing for others."

In October of 2022, Bernedette was offered a spot in a clinical trial to kill blood cancers. However, the $2,550 cost for the non-placebo medications put the trial financially out of her reach. She declined the trial as she did not want to hold a spot someone else could use. Trials are considered experimental and therefore, not covered by insurance. However, they are extremely important for research. The disability payment she receives monthly is at the poverty level. Nevertheless, she tries hard to support herself and her child, a full-time college student, who is her whole world. Shortly after she declined the trial, another spot opened up. The doctors and nurses, ever inspired by her generous spirit, collected the funds needed amongst themselves.

The trial was completed with promising results. However, expensive medications were needed as a follow-up to the trial. Her nursing advocate was able to secure discounts from the pharmaceutical companies and an anonymous donor supplied $1,000 which left her short $1,765. She received that amount from friends but only accepted it under the condition that they would allow her to try to repay it which she has started to do by selling personal items. Out of 12 members of the trial (three dropped out due to the extreme adverse effects of the medication), two remain. Unfortunately, the others lost their battle with cancer. Bernedette is one of the remaining survivors.

Bernedette has excruciating pain and exhaustion so in 2022, she was unable to continue her yearly tradition of delivering a fully stocked Thanksgiving basket of cheer to a needy family. She did find the strength, however, to donate food. In January 2023, she was told by a six-year-old girl, a patient at the same facility Bernedette attended, that she "missed" Christmas. The child wrote to Santa but felt he did not find her since she was in the hospital. As ill as Bernedette was, she managed to organize a belated Christmas for the child. This included presents, decorations, a Christmas tree, and of course, a visit from Santa himself who assured the girl she was never forgotten. The child beamed when he told her he was proud of her bravery. She thought Santa did not come since she cried when she got needles. Santa admitted to her that he also cried when he got needles.

Bernedette continues with the necessary treatment after the trial was completed. This additional part of the trial is for 12 weeks. She recently completed week six. March 16, 2023 is the estimated date this part of the trial will be completed. However, her road to recovery remains a long one. The cancer treatment and back problems leave her with vision changes, headaches, and loss of strength in her hands, arms, legs and feet. To date, her insurance has denied an updated MRI of her back. The doctors feel something is pressing on her spine. Insurance wants a peer-to-peer review. An MRI with sedation is needed before more intense pain medications are prescribed. Bernedette has turned down hospice twice but has recently entered a palliative care program. That program is working on getting her a motorized scooter or wheelchair which will be necessary as her condition progresses. She is a severe fall risk. Her back pain causes blinding headaches which make her nauseous. She cannot walk or stand for long. Just a nudge when in a crowd could cause her to lose her balance.

Bernedette is not one to ask for help, but I am. Please join me in helping her with funds to assist with her mounting medical bills and the need for help with daily expenses for food, transportation, and everyday life. Our goal is $7,000 to relieve her of the current financial situation in which she finds herself. My thanks to her friend for his dare which made it possible for me to meet and befriend this beautiful, caring, generous, and inspiring individual! Bernedette is truly an angel, an angel, unfortunately, with broken wings.

Thank you for taking the time to read this story.

Tina (Christine) Grzywacz