A Mother’s Instinct and a Devastating Diagnosis

The ordeal began in late 2023 when Inez started experiencing vague abdominal pain. Ellen Vossen, Inez’s mother, noted her initial concerns: Nurserys were seen on an ultrasound, but the doctors said that glands can occur more often after a continued infection. Driven by a mother’s intuition, Ellen persisted. Yet my gut feeling continued to say that there was more to it. On December 28 I urged a second ultrasound. The subsequent investigations revealed the devastating truth: Inez had neuroblastoma stage 4, a malignant tumor of the nervous system. The cancer had metastasized to her bone marrow, right hip, and spread throughout her abdomen via the glands.

Ellen recounts the moment of the diagnosis: At that moment your world is collapsing. You think: this is not happening to us, this is not possible. But you don’t have time to stand still, you have to switch immediately. From that moment our lives has changed wholly. The family immediately began navigating the complexities of pediatric cancer treatment.

A Warrior’s Spirit Amidst Grueling Treatment

Inez immediately began treatment at UZ Leuven, enduring intense chemotherapy sessions every 10 days. The side effects were harsh, including hair loss, but Inez faced it all with remarkable resilience. Inez received heavy chemotherapy every ten days. Her hair fell out,but she dealt with it in an amazing way. At a certain moment she looked in the mirror and said, ‘I’m super gorgeous,’ ellen shared. The family drew strength from inez’s unwavering spirit.

We were impressed by her strength. That kept us right. We saw our child suffer, but together occurring she kept laughing and joking. No matter how heavy it was, she kept fighting. That gave us hope, Ellen explained, highlighting the profound impact of Inez’s positive attitude on the entire family.

Setbacks and Continued Hope

In may, Inez underwent a major operation to remove the tumor. Though, surgeons could only remove 40% of it as the cancer cells were dangerously close to her blood vessels and pancreas. They could only remove 40 percent of the tumor, because the cancer cells were on her blood vessels, near the pancreas. Operating further woudl be life -threatening. That news was a blow. You hope that the tumor can be almost completely removed,but that turned out to be unfeasible, Ellen explained.

Despite the challenges,Inez’s spirit remained unbroken.She was soon back on her feet, even cycling through the hospital corridors.It was terrible to see her at the ventilation machine in intensive care, with different tubes in her arms and neck. Yet she was soon happily cycling around again.This is how everyone knows her at UZ Leuven: while cycling through the corridors of the hospital.

Stem Cell Transplants and Lingering Complications

Following the surgery, Inez underwent a stem cell transplant, a process that proved more challenging than anticipated. We thought, ‘That’s just a bag of stem cells.’ But the impact was much larger than we thought. She was in isolation for weeks, had to be washed for four days every four hours and had a heavy mucous membrane inflammation. She was so sick,and yet she kept laughing. That’s who Inez is. despite everything, she remains a light.

The second stem cell transplant brought further complications, including liver damage and a fungal infection in her lungs. In December, Inez began a series of 12 irradiations, choosing to undergo the treatment without anesthesia. She said: ‘I can perfectly stop, mama. I’ve been for five years. I have also experienced this worse than this.’ We tried this, and it worked very well. It was also a moving scene.With a broad smile, Inez always drove into the waiting room of the radiation room in her car. For example,she always put a smile on the face of other patients.

The Urgent Need for DFMO

After months of relentless treatments, Inez is now receiving

Inez’s Battle: Understanding Neuroblastoma and the Fight for Life-Saving Treatment

Did you know that neuroblastoma, a rare and aggressive childhood cancer, affects approximately 700 children in the US each year? This interview delves into the complexities of this disease and the urgent need for innovative treatments.

Interviewer (Senior editor, world-today-news.com): Dr.Evelyn Reed, you’re a leading expert in pediatric oncology, specializing in neuroblastoma. Inez’s story highlights the desperate search for effective treatments. Can you explain neuroblastoma in simple terms for our readers?

Dr. Reed: Neuroblastoma is a cancer that develops from immature nerve cells, typically found in the adrenal glands or along the spinal cord. It’s most frequently diagnosed in children under five years old, often presenting with vague symptoms like abdominal pain or a lump. The cancer’s aggressiveness varies significantly, with stages ranging from localized tumors (stage 1) to widespread metastasis (stage 4), as seen in Inez’s case. Understanding the stage is crucial for determining the appropriate treatment plan.

Interviewer: Inez’s parents are seeking access to DFMO, a medication not yet approved in Europe. What is DFMO, and why is it considered a possibly life-saving treatment option?

dr. Reed: DFMO, or difluoromethylornithine, is an enzyme inhibitor that targets an enzyme crucial for cell growth and division. Studies have shown it is especially effective in reducing the risk of relapse following neuroblastoma treatment. While initial trials were promising, its effectiveness can vary among patients.The hope is that, in certain cases like Inez’s, DFMO can help prevent the cancer from returning. The use of DFMO is still considered experimental in many countries, but its potential positive influence on relapse prevention should not be dismissed.

Interviewer: What are the standard treatment protocols for stage 4 neuroblastoma like the one Inez is facing?

Dr. Reed: Stage 4 neuroblastoma requires a multi-modality approach: this usually involves high-dose chemotherapy, surgery to remove the tumor (where feasible, as in Inez’s case), radiation therapy, potentially stem cell transplantation, and immunotherapy. The goal is to eliminate the existing tumor and prevent relapse. The treatment course’s specificity is steadfast by the patient’s overall health status,the extent of cancer spread,and response to initial treatments.

Interviewer: Given the severity of Inez’s case and the challenges she’s faced, what are some of the potential long-term challenges she might encounter?

Dr. Reed: Survivors of high-risk neuroblastoma, like Inez, can face long-term side effects from the intensive treatment, including cardiac dysfunction, secondary malignancies, endocrine disorders, and neurological issues. Ongoing monitoring and supportive care are crucial to manage these potential complications and maintain quality of life. These long-term effects can include infertility, growth impairment, hearing loss, and cognitive difficulties. Understanding these potential physical and cognitive deficits permits better planning for early intervention and appropriate intervention. Early and frequent assessment helps maximize quality of life and improves patient prognosis.

Interviewer: What message of hope can you offer to families facing similar situations?

Dr. Reed: While the journey is undoubtedly arduous, advances in pediatric oncology offer increasingly effective treatment options. Open and honest interaction with the medical team, coupled with unwavering hope and support, are vital. Families should actively participate in decision-making, ensuring they fully understand the treatment plan and potential risks.

Interviewer: Any final thoughts, Dr. Reed?

Dr. Reed: Research into neuroblastoma continues to advance, leading to new targeted therapies and improvements to existing treatment strategies. Although neuroblastoma remains a grave challenge, the prospects for prosperous outcomes are constantly improving. It’s crucial for families to find support networks and advocacy groups, like those focusing on childhood cancer, for the emotional, and informational support needed to navigate these challenging times.

We encourage readers to share their thoughts and experiences in the comments below,and help spread awareness of neuroblastoma and the importance of research and effective treatments.