Further diagnostics, i.e. CT scans and MRI scans, will be needed in the near future, which will allow doctors to assess how the disease is progressing and plan the next treatment steps.
In the case of the brain lesion An additional consultation with a team of radiologists is scheduled to decide whether radiation therapy could be used. It's another stage full of anticipation and anxiety, but also hope that there will be a ray of good among the difficult information.
Maciej extends a huge thank you to everyone who is with him on this journey. He thanks you for your words of support, kindness and presence. Every message, every gesture of encouragement gives him the strength to go on with the belief that there are still many good days ahead.
October 31, 2025
When the conversations around you fall silent, and you have to look within yourself for support. This is when the disease becomes even more difficult - because the struggle is not only for health, but also for the presence of another person next to you.
PLN 1,305 (3%)Shortfall: PLN 48,695
Three decades of disease. Neurofibromatosis does not let go❗.
A tumor in the trachea. Changes in the brain and liver, and a body that again gives an alarming signal.
Highlights
15,967.00 PLN(32%)
Still need - 34,033 PLN
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Highlights
Update
Between hope and uncertainty
After a recent oncology consultation, there was both good and difficult news. Some of the lesions remained stable, however some tumors, primarily in the neck, chest and around internal organs, have enlarged.Further diagnostics, i.e. CT scans and MRI scans, will be needed in the near future, which will allow doctors to assess how the disease is progressing and plan the next treatment steps. In the case of the brain lesion An additional consultation with a team of radiologists is scheduled to decide whether radiation therapy could be used. It's another stage full of anticipation and anxiety, but also hope that there will be a ray of good among the difficult information. Maciej extends a huge thank you to everyone who is with him on this journey. He thanks you for your words of support, kindness and presence. Every message, every gesture of encouragement gives him the strength to go on with the belief that there are still many good days ahead. October 31, 2025
The burden hidden behind a smile
There is a slight smile on Maciej's face, a reassuring one, one that is meant to say "everything is fine." But deep down, in a space inaccessible to the gaze of others, everyday life takes on a weight that is hard to lift.Loneliness more difficult than pain
The hardest moments come not when the body refuses to obey, but when silence falls in the heart.The courage to ask for help
That's why Maciej decided to seek psychological help. It's a way to regain inner balance, an honest admission to himself that support is needed. It's also a proof of courage - because even in the most difficult moments, you can take a step toward hope if you just allow yourself to ask for help. August 25, 2025
Disturbing results from Holter test. More tests underway
A 24-hour Holter monitoring recording revealed episodes of tachycardia - both ventricular and supraventricular. Maciej's self-reported symptoms, such as rapid fatigue and weakness, worry doctors and require more extensive diagnostics. A stress test is planned for the near future, which will help determine the cause of these discomforts and decide whether additional imaging tests - an MRI or CT scan - will be necessary.Every day is about vigilance and preparedness. We look forward to the results
No new therapeutic decisions will be made until the stress test is performed. However, the medical team has made it clear - in the event of any deterioration in Maciej's health, he should be immediately admitted to the hospital, regardless of scheduled appointments. July 1, 2025 Another intruder was removed, this time from the occipital part of the head. The procedure was carried out under local anesthesia, thanks to which Maciej was able to return home after two hours. Thus, our protégé added the 19th operation to his account. March 5, 2025
Explore the history of
1997 and the onset of the disease
Maciej was just five years old when the first alarming symptoms appeared. Difficulty breathing became the reason for a referral to the hospital on suspicion of malignant lymphoma. Tests ruled out this diagnosis, but showed the presence of a tumor behind the top of the left mediastinum. Treatment with chemotherapy was started, which was unsuccessful.
He lives under the care of oncologists and cardiologists - for decades.
Subsequent consultations at today's Mother and Child Institute led to the end of chemotherapy and brought a diagnosis: neurofibromatosis type I. This is a genetic disease that leads to the formation of multiple tumors throughout the body. Some of them can become malignant. There are also often characteristic skin changes: spots and discoloration resembling bruises.
Years of surgery and treatment - 2002-2017
Maciej's childhood and youth were marked by successive surgical interventions and attempts to control the disease:
- 2002 and 2006- thoracic reconstruction surgery,
- 2008 - ablation to improve heart function,
- 2014 - removal of a tumor from the left scapula measuring 8.5×6.5 cm,
- 2015 - drying of tumors from the left thigh and a skin lesion from the right hand,
- 2017 - removal of new skin lesions and tumor from rib area
After this period, Maciej remained under constant oncological and cardiological control.
2022 - relapse
In the first half of 2022, new lesions appeared. The study detected growing tumors, as well as a new tumor in the head - located in the Sylvian fissure. For this reason, another follow-up examination was scheduled for September/October 2024 to evaluate further treatment options.
Current status - latest research results
Maciej underwent another series of check-ups. An MRI of the brain showed that the tumor in the Sylvian fissure shows no growth or activity. There are no indications for intervention, and another MRI is scheduled for next year. A CT scan of the neck, chest, abdomen and pelvis revealed much more serious changes.
The tumor in the trachea, although almost unchanged, still causes shortness of breath and coughing due to its mobile location.
In the chest, they identified:
- A tumor in the upper thoracic orifice area on the left side (72×61 mm), surrounding the left subclavian and vertebral arteries,
- A tumor in the left supraclavicular region (31×20 mm),
- A tumor on the right side of the chest (52×30 mm).
In addition, he was found to have reduced left lung volume, abnormal ventilation, a highly positioned left diaphragmatic dome and an enlarged heart silhouette. As a result, Maciej was referred to the Institute of Cardiology in Warsaw for further consultation. The study is scheduled for May 2025.
In the abdominal cavity, the lesions are more advanced:
- The tumor in the liver hilum with infiltration of the left lobe and a structure extending along the left branch of the portal vein measures 63×40 mm and is most likely a plexiform neurofibroma.
- The tumor at the right branch of this vein measures 56×19 mm.
The pancreas, spleen, kidneys and pelvis remain without significant changes.
At present, neither surgery nor chemotherapy is an option - it could worsen the condition. As long as liver flow remains normal, treatment is limited to annual check-ups. If symptoms worsen, immediate contact with an oncologist is necessary.
Need for support
Maciej has been fighting his battle with the disease for nearly three decades. Treatment, research, travel to specialists and daily functioning in the shadow of neurofibromatosis require tremendous strength and equally tremendous financial resources.
He does not know life without vigilance - without silence at the edge of pain.
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