Light for Inez: Limburg Family Launches Crowdfunding
Five-Year-Old Inez Battles Neuroblastoma with Courage
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In Zonhoven, Ellen Vossen (41), Yves Aerts (41), and their daughter Sia (8) are facing their toughest challenge yet.Their youngest, five-year-old Inez, is bravely fighting neuroblastoma, a rare and aggressive form of childhood cancer.
the Initial Diagnosis
The ordeal began in late 2023 when Inez started experiencing vague abdominal pain.”An ultrasound revealed some swollen glands, but doctors suggested it could be a common occurrence after an infection,” explains her mother, ellen. “Though, my gut feeling told me something more was wrong.On December 28, I insisted on a second ultrasound. After a series of tests, it became clear that something was seriously amiss, and we rushed to Leuven.”
The subsequent diagnosis was devastating: neuroblastoma stage 4, a malignant tumor of the nervous system.the cancer had metastasized to her bone marrow, right hip, and glands throughout her abdomen. “At that moment, your world collapses. You think, ‘This isn’t happening to us, this can’t be real.’ But there’s no time to dwell; you have to act instantly. From that moment on, our lives changed completely.”
“I am super mooi” – Inez
Treatment commenced immediately at UZ Leuven. “Inez underwent intense chemotherapy every ten days. Her hair fell out, but she handled it incredibly well. At one point, she looked in the mirror and declared, I am super mooi
(I am super stunning).” We were amazed by her strength. It kept us going. We watched our child suffer, yet she continued to laugh and make jokes. no matter how tough it was, she kept fighting. that gave us hope.”
Surgery and Setbacks
In May, Inez underwent a major operation. “They could only remove 40 percent of the tumor because the cancer cells were wrapped around her blood vessels near the pancreas. Further surgery would have been life-threatening.That news was a blow. You hope that the tumor can be almost completely removed, but that proved impossible.”
Despite the severity of the surgery, Inez was soon back on her feet. “It was heartbreaking to see her on a ventilator in intensive care, with tubes in her arms and neck. Yet, she was soon cheerfully cycling around again. Everyone at UZ Leuven knows her as the little girl cycling through the hospital corridors.”
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inez with her bike in UZ Leuven -
Inez with her bike in UZ Leuven -
Inez with her bike in UZ Leuven
Stem Cell transplant and the Road Ahead
Following the surgery, Inez had a stem cell transplant.”We thought, ‘it’s just a bag of stem cells.’ But the impact was much greater than we anticipated. She spent weeks in isolation, had to be washed every four hours for four days, and developed severe mucositis.”
Understanding Neuroblastoma
Neuroblastoma is a rare cancer that primarily affects children. It originates in the adrenal glands or the nerve tissues.
What is it?
“Neuroblastoma is a rare and aggressive childhood cancer that develops in the adrenal glands or the nervous system. It is indeed the worst tumor that occurs in children and behaves unpredictably: in young children, it can disappear spontaneously, while in older children it is frequently enough very aggressive. The disease only manifests itself late, with symptoms such as pain, easy bruising, fatigue and loss of appetite.”
Treatment and Prognosis
“The treatment is heavy and lasts about a year. It includes chemotherapy, surgery, radiotherapy and stem cell transplantation. Only half of the patients in stage 4 survive.Relapse usually means a very poor prognosis with little chance of survival.”
What is DFMO?
“DFMO stands for difluoromethylornithine and is a maintainance treatment in pill form, intended to prevent relapse. It was approved in the US, but not yet in Europe and is also currently difficult to obtain.”
Five-Year-Old inezs Brave Fight Against Neuroblastoma: A Q&A Guide
Inez, a five-year-old from Zonhoven, is showing astonishing courage as she battles neuroblastoma. This Q&A guide provides information about Inez’s journey, neuroblastoma itself, and potential treatments.
Understanding Inez’s Journey
What is Inez’s story?
Inez is a five-year-old girl diagnosed with stage 4 neuroblastoma in late 2023. Her journey involves chemotherapy, surgery, a stem cell transplant, and ongoing treatment. Despite the challenges, she maintains a positive attitude.
How was Inez diagnosed with neuroblastoma?
Inez initially experienced vague abdominal pain. After a second ultrasound and further testing,doctors diagnosed her with stage 4 neuroblastoma,which had metastasized to her bone marrow,right hip,and glands throughout her abdomen.
What treatments has Inez undergone?
Inez’s treatment plan has included:
Intense chemotherapy
Surgery to remove part of the tumor
A stem cell transplant
How did inez handle the side effects of her treatment?
Despite losing her hair due to chemotherapy, Inez maintained a positive attitude. Her strength and ability to laugh and joke throughout the process have been a source of inspiration to her family.
What where the results of Inez’s surgery?
Doctors were able to remove only 40% of the tumor during surgery because the cancer cells were wrapped around her blood vessels near the pancreas. Further surgery would have been life-threatening.
What was Inez’s experience with a stem cell transplant?
inez underwent a stem cell transplant after surgery. The impact was greater than expected, requiring weeks of isolation and causing severe mucositis.
Neuroblastoma: key Facts and Information
What is neuroblastoma?
Neuroblastoma is a rare cancer that primarily affects children. It originates in the adrenal glands or nerve tissues and can be aggressive.
where does neuroblastoma originate?
Neuroblastoma originates in the adrenal glands or the nerve tissues.
How common is neuroblastoma?
Neuroblastoma accounts for 6% of cancers in children aged 14 and under, with around 100 children diagnosed each year in the UK. It is most often diagnosed in children under the age of five.
What are the symptoms of neuroblastoma?
Symptoms of neuroblastoma can include:
Vague abdominal pain
Pain
Easy bruising
Fatigue
Loss of appetite
The disease frequently enough manifests late,making early diagnosis challenging.
How is neuroblastoma treated?
Treatment for neuroblastoma typically includes a combination of:
Chemotherapy
Surgery
Radiotherapy
Stem cell transplantation
the treatment is intensive and can last about a year.
What is the prognosis for neuroblastoma?
The prognosis for neuroblastoma varies depending on the stage and other factors like age, genetics and how the tumor looks under a microscope. Only about half of patients with stage 4 neuroblastoma survive.relapse often indicates a poor prognosis.
Stages of Neuroblastoma
| Stage | Description |
| :—— | :—————————————————————————————————————————————- |
| Stage 1 | The cancer is localized to one area. |
| Stage 2 | The cancer has spread to nearby areas. |
| Stage 3 | The cancer has spread further and may involve lymph nodes on both sides of the body. |
| Stage 4 | The cancer has spread to distant sites such as bone, bone marrow, liver, or other distant lymph nodes. |
| 4S | Special category for infants under 1 year old; cancer is localized with spread to skin, liver, or bone marrow (but less than 10% marrow). |
DFMO and Other Potential treatments
What is DFMO?
DFMO (difluoromethylornithine) is a maintenance treatment in pill form intended to prevent relapse of neuroblastoma.
What is the availability of DFMO?
DFMO is approved in the US but not yet in Europe, and it can be difficult to obtain.
Why is DFMO used?
DFMO is used as a maintenance treatment to reduce the risk of neuroblastoma relapse. This has been shown in numerous studies.
What other therapies and clinical trials are on the horzon?
research continues to make strides in treatment for neuroblastoma, including immunotherapy, targeted therapy, MIBG therapy and clinical trials. Ask your oncologist what is right for you and your family.