Christine Luddy's fight against Glioblastoma

We, The Luddy Family, would like to thank you for visiting our GoFundMe and for taking the time to understand what our family has been going through over the past year.

On June 7, 2021, our mother, Christine Ott Luddy, was rushed to the ER after waking up in the middle of the night with paralysis on the entire right side of her body and loss of speech. After many tests and scans, she was diagnosed with a malignant brain tumor known as Glioblastoma (GBM) Grade IV. She was admitted to the neurology floor at Delray Medical Center and immediately set up with a team of doctors to plan the next steps.

In the following days, we were very worried about our mother. We had so many questions and so many unknowns ahead of us. She was heavily monitored and medicated to manage her symptoms and to keep her comfortable. Fortunately, the tumor was close enough to her skull that it was operable. On June 17, 2021, our mother had a craniotomy to remove as much of the tumor as possible without damaging important parts of her brain. Post-surgery, a biopsy of the tumor discovered it was malignant. She then spent a total of 4 weeks in the hospital recovering from brain surgery and working with Physical, Speech and Occupational Therapists (PT/OT) to regain enough strength and very limited mobility on her right side to be safely discharged back home. She was able to recover her speech during this time. We did not know it then, but this would have been the easier part of her recovery.

To understand the gravity of our mother’s diagnosis, we must explain what a Glioblastoma is. A Glioblastoma Grade IV (GBM) is one of the most complex, deadly, and treatment-resistant cancers. It is very aggressive and fast-growing. The five-year survival rate for GBM patients is 6.8%, and the average length of survival for GBM patients is estimated to be 8 months. In addition to being life-threatening, GBM – and its harsh treatments – inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part. Many patients will lose their ability to work, drive, and perform other functions that contribute to one’s sense of self and independence.

(See link for more information: https://braintumor.org/take-action/about-gbm/)

Despite the odds, it has been a miracle that our mother is still here and doing as well as she is one year later, but she still has a difficult journey ahead.

Since being home, her recovery continued with more and more unknowns arising and several lows as we all learned how to navigate this very unpredictable affliction and how to help our mother in the best ways possible. Over the next few weeks after returning home, she would have numerous doctors’ appointments and PT/OT sessions as we learned how to set up caregiving, therapy, hospital equipment and deal with the nuances of insurance and the many unfortunate restrictions. Shortly after her return home, on July 21, 2021 (Mom’s 64th birthday), she would be rushed by ambulance to the hospital due to a severe seizure and spent the next couple of days in the ICU recovering before returning back home. Unfortunately, this would not be the end of the seizures as they have now become a regular occurrence and need to be maintained with medication. The seizures have caused constant setbacks in her speech and will drain her energy, often taking days to recover.

After the first seizure, she started radiation and chemotherapy treatments. Once the radiation therapy was complete, she transitioned to monthly immunotherapy and chemotherapy treatments. Her current treatment plan is scheduled for 2 years, which she is almost a year into. In tandem with the treatments, she continues with PT/OT sessions twice a week to determine if she will ever be able to stand, walk or swim (her favorite activity) again. It has been such a long and exhausting year for our family as we continue to adjust to this - multiple weekly doctor’s appointments, treatments to fight the remaining cancer, various medications, MRI scans, sporadic seizures, blood clots, medical complications and setbacks, adjusting their home for a wheelchair and learning how to be the best cheerleaders and caregivers we can be for her.

Our mother continues to courageously fight her cancer and is working hard to regain her mobility in hopes of being independent again one day.

Unfortunately, remission is not something commonly heard of with a GBM, and the outcome is likely that this will end her life. But until then, we aim to make her comfortable, keep her spirits up and offer her the best care we can.

Those who know our mother know how upbeat she is, how she welcomes everyone in her home with open arms and how driven she can be when it comes to completing tasks and achieving her goals.

Before her diagnosis, she was a passionate school teacher in Boca Raton to children with severe autism. Now, she is unable to work, drive, or do any day-to-day functions independently. Our father has stepped up to be the primary income provider, caregiver, and the most supportive husband he can be. This road has been difficult for both of them and has changed them in many ways. We are beyond fortunate that her treatments have been successful thus far keeping the cancer at bay and to have had 1 full year with our amazing and strong mother. We honestly did not know how much time we would be given when the doctors used the word “terminal,” and we began doing our research.

That being said, anyone who has dealt with cancer knows its immense challenges. GBM is one of the more expensive cancers to treat, often leaving patients and families with major financial hardship. After 1 year of trying to keep our heads above water, our family is now feeling the financial burden and having tough discussions regarding sacrificing certain care to not leave my parents financially ruined.

For example, affording to continue with a hired professional caregiver who is an additional out-of-pocket expense not covered by insurance of $52,000/year for 40 hours per week and the desire to increase her PT, possibly adding aquatic PT into her rehabilitation, etc.

Our father continues to work tirelessly to support them and would never dream of asking for help. However, we can’t continue to do this alone.

Here is where YOU come in - we hope, one day, our father, who is almost 70 years old, can look forward to retirement with our mother and live comfortably for the remainder of their days. He has had to pay out of pocket to employ a caregiver, pay all the accumulating medical bills and continue providing proper medical insurance coverage for our mother. The reality is, our mother will most likely be on chemotherapy and immunotherapy treatments for the rest of her life. She will need a full-time caregiver and several other caregiving items that insurance will not cover. We also aim to make the best of each day we have with her, whether we can allow for her to travel, spend more time with her grandkids, get into their pool for a swim, or just comfortably relax at home.

We hope and pray that, despite the statistics and what the doctors say, she can beat this cancer and have several wonderful years of life ahead of her.

Our mother is a very selfless and giving person. She wears her heart on her sleeve and always takes the best care of anyone who crosses her path. Over the years, she has helped our neighbors with raking leaves, shoveling driveways in Rochester, NY, cleaning trash from highways in Rochester and Miami Beach, checking in on our elderly neighbors, teaching children with behavioral issues and special needs, and so much more.

Our goal and hope by establishing this GoFundMe is to be able to assist our parents in any way we can. We know, that with the help of the amazing community our parents have surrounding them, we can provide at least some relief during this difficult time.

Thank you to our entire family and close friends who have offered an overwhelming amount of unconditional love and support - we are beyond appreciative and grateful!

Thank you for reading, sharing and donating.

The Luddy Family