We're parents for seriously ill 8year old boy Łukasz (Luke) who were diagnosed with brain tumor called :

Medulloblastoma (a malignant tumor of the central nervous system, most commonly found in the

cerebellum in children) with medical markings of - WHO G4 Non=Shh, Non=WNT, N-Myc (-), C-Myc(-).

Some of you might know us and our history, but for those who are not aware of it, we are explaining

everything once again below :

Since around half of November till late December 2021, Luke had paroxysmal headaches, was vomiting

and had been always sleepy, symptoms were worse and worse from day to day so we started to search

for the cause of this state.

The neurological symptoms, which Luke had (as we learned later), were not associated by us with

cancer/tumor or anything like that by any chance.

At first, every doctor was blaming everything on some kind of parasites or just regular eyesight problems,

but the truth was more terrifying...

8th January we finally made our appointed visit at ophthalmologist, we found out that Luke has

congestive edema of the optic nerve head, reddened cornea and iris.

So we got a referral to a neurologist, privately of course, because visits to the National Health Fund (free

medical care in Poland, we pay tax every month for this, then we get a salary) are very long, and the

next visit would be in September (well, it supposed to be, but if we waited our son would be at the

cemetery by now...)

We didn't want to wait, so we contacted a neurologist in Olsztyn, recommended by many people, and we

got on the urgent reserve list.

The visit was in January, the same month (not initial 8-9 months later...), where we also initially learned

that Luke has a tumor/cyst or hydrocele.

We were referred for an MRI, but it was privately scheduled for February 10. We couldn't wait that long.

The doctor with whom we had a private visit and with whom we had contact all the time sent us to the

Provincial Specialist Children's Hospital in Olsztyn for tests and MRI.

The MRI was done on the same day, we also had an EEG scheduled for the night, which did not take

place because the MRI result came earlier.

In the evening I was asked to the doctor's office - I felt that it would not be good news. The doctor asked

what initial diagnosis I had heard - unfortunately the worst was confirmed - uneven mass on the back of

the head, we need to be transported to Warsaw.

The next day, February 1, 2022 - we were already in Warsaw, the doctors got acquainted with the

history, the MRI image, and an urgent life-saving operation was scheduled for the next day.

On February 2, 2022 - a subtotal tumor removal operation was performed, the tumor was the size of an

orange, hence the pressure and swelling causing headaches and vomits occured

Luke was supposed to be woken up, but unfortunately, he developed a pneumothorax. So he hit the

block again. Drainage inserted.

February 4, 2022 - Luke was transferred to the neurosurgery department.

February 10, 2022 - We were transferred from the Neurosurgery Ward to the Oncology Ward and under

the care of Dr. Marta Perek-Polnik

February 11, 2022 - Luke was taken for MRI of the head but nothing was visible due to postoperative

swelling.

February 12, 2022 - Luke took the first dose of chemotherapy - fortunately he took it well, without any

side effects.

These, however, appeared after 3 days and it was only vomiting, which also subsided.

February 14, 2022 - There was supposed to be a parental change but it didn't happen because the wife

was diagnosed with COVID-19.

On the same day, an MRI was done, which showed that there are metastases in the cervical vertebrae,

nothing big, but still, there were some..

February 17, 2022 - Change of central line (central cannula) to vascuport (a small circular "ball" put

under the skin below the clavicle with canal directly to near-heart veins), as well as removal of sutures at

the back of his head (ones made after general life saving operation - partial removal of a brain tumor

located in the cerebellum) - performed under general anesthesia.

February 20, 2022 - We are at home, we enjoy each other for now, and help Luke in the simplest

activities cause operation had damage on his mobility, speech etc. He can't even get up or go to the

bathroom on his own, he needs the help of another person all the time...

On Monday, I'm going to the family clinic (place with pediatricians and general illness help) to give

copies of Luke documentation to his pediatrician and make ask for appointment to change the bandages

and then arrange a physiotherapist ASAP because, as above, Luke not walk alone.

March - We finally got it! Luke goes to Mrs. Iza (physiotherapist) and there are progress, of which we are

all proud.

Then we went for chemotherapy, of course there were obstacles along the way.. Covid, drop in outpatient

results (basically this means that red platelets and hemoglobin dropped below safe levels), contact with a

person in the hospital who had chicken pox.

Along the way, an MRI was also performed, which shows that the metastases on the cervical vertebrae

are with complete regression, and in the head with partial regression, by the way, it turned out that Luke

has allergies.

May came - we started radiotherapy: 6 weeks of irradiation. Luke endured it like a hero untill the 4th

week, then his weight began to drop.

At first we fought for every bite to get him to eat something, but it didn't give the results we expected. The

weight was only 18.8 kg (41,44lbs) , which is definitely not enough for an 8-year-old.

The decision was made to connect feeding bags. He gained weight, slightly, but still. Unfortunately, our

happiness did not last too long, because the liver enzymes rose. The bags were put away, and

medicines were prescribed for Luke.

Now it's June and we are slowly closer to finishing the radiotherapy.

After radiotherapy, for the next year, we will go to Olsztyn for chemotherapy and every 6 weeks to

Warsaw for megachem (so-called packers). In addition, we must have constant rehabilitation, because

unfortunately we had it suspended due to radiotherapy (no contact with the physiotherapists).

We still have a long way to go for our son to live and enjoy his childhood.

This is not how we imagined our son's life, this is not how we imagined our life. The hospital became our

second home.

We were forced to learn things we didn't want to be able to do, such as partially operating a fluid pump.

Luke is our eldest son, his siblings are waiting for him at home, who understand what is going on and are

cheering him on to recover.

We never asked for anything, we always helped others as far as possible, the wife lost her mother 2

weeks before Luke was born, previously her younger brother as a result of illness.

Unfortunately, I had to give up my job to be able to take care of Luke during his radiotherapy.

It was not an easy decision, but it was a necessity - no employer will give an employee 6 weeks of paid

leave, even in such a situation, although it was also partly about employees whom I did not want to leave

with a full-time job and missing a pair of hands to work (people who know me, know where I worked and

how valuable my presence in the workplace was. I am still, by this day, often approached by clients and

they almost beg me to return to work, or those who don't know my exact situation ask me when i will be

back...)

At the moment I am on "unemployment" and can't take any job, although I do not have any time off. The

care allowance that I receive in exchange for resigning from work, to take care of Luke who has received

a disability certificate (which also opens several doors for us that will help us a lot), is not enought for too

much - the costs simply overwhelm us.

Simply in the world, we would like someone to give us a helping hand and aid us during this difficult

period, simply speaking and not beating around the bush - we are not doing well financially...

We beg you, do not leave us in this unequal fight against cancer!

Thank you to everyone who wants to help us!

Luke's parents.

#ArmiaMałegoŁukasza

If Further informations are needed, please feel free to find me or my wife on Facebook and DM one or

even both of us. Just type in, in the search bar, hashtag provided higher and look for "Kamila" or "Adrian"

within posts.

From the bottom of our hearts, thank you, once again for all your support - every cent counts <3