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Olivia is a young 10-year-old girl from Poland who lives in Rælingen with her parents and older sister Nadia. She is fun and talkative, a little shy. A joy chaser for an incredible number of people - for whom a lifetime is waiting. Suddenly, Olivia is unwell at school and her parents see a doctor.
Life, plans, prospects
We are a family that lives in No since 2018. We have two daughters 16 years old Nadia and 10 years old Olivia. We moved to Norway not because of money, but partly because of changing something in our lives and a better life for our children. It wasn't easy to leave my family and just go away. I came to No first by myself (my good friend Tomek, who has been living here longer, helped me with this). After a year my family came to me.
Our children came to Norway on August 10, and on the 15th they have already gone to a Norwegian school, without the language, but they managed to cope with the new challenge very quickly.
Our life was like any other, we tried to deal with the challenges that Norway presented to us. We achieved the milestones we wanted to achieve here (language, permanent work, learning and understanding Norwegian society). Life went on in its normal stable track.
Until we got the MRI of Olivia's head. It was Sunday, February 12.02.2023, XNUMX.
It was a SHOCK
As I mentioned on the phone, Olivia had a problem with her eyes, we thought it was because of her phone/iPad usage. Sometimes she mentioned that she had a headache, but we thought it was because she was tired after school or because of her eyes - we were waiting for an appointment to see the eye doctor.
A week before the visit, Olivia felt unwell at school, we immediately went to the fastlege and had her blood tested, on a Tuesday. On Thursday, the situation repeated itself, and then the doctor referred Olive to the hospital in Akershus for an MRI of the head. We got a call on Sunday (on what seemed like a very quiet day) that we could come in for an examination. After 2 hours we got a devastating result -…a brain tumor.
It was a SHOCK. On the same day we found ourselves in Rikshospitalet. We got another shot in the heart. Diagnosis: Grade 3 brain glioblastoma. Medical name: DIPG Diffuse midline glioma with H27KXNUMX-altered. – this is not an ordinary tumor, this is a monster. This information was a blow to the heart for us (it cannot be described in words). Olivia came to the hospital on her own two weeks ago. Four weeks ago, she was skating, playing hockey with me, dancing at home to music. Unfortunately, it's not possible now, we help her walk and practically everything.
DIPG Diffuse midline glioma with H3K27-altered. –
Diffuse midline gliomas with the H3 K27M mutation. Formerly named diffuse internal pontine glioma (DIPG) - these are deadly high-grade childhood brain tumors that are inoperable and cannot be cured. Despite numerous clinical trials, the prognosis remains poor, with a median survival of approximately 1 year from diagnosis.
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The response of the Norwegian health service
The reaction of the doctors in the hospital was really very fast, the tests were carried out quickly at the highest level, and the treatment process of radiotherapy was prepared. We received really great help from the hospital and the whole team that surrounds us (doctors, specialists, psychologist). Olivia was prepared for radiation therapy very carefully and all her questions and suggestions were taken into account.
This news affected not only us but also our family, friends and acquaintances here in Norway and in Poland.
We get a lot of messages offering help from them.
My boss from work (a good friend) created a Splis account.
Hope
Unfortunately, the tumor is inoperable. In addition, in Norway it is not possible to take a biopsy so as not to damage the functioning of the brain.
There is hope in Switzerland. There is a research clinic there and they can take a sample there and either confirm the type of tumor mutation or it may turn out to be a different mutation for which there are drugs. There is also hope in Paris, where it is similar clinic but Norway does not reimburse this type of research. Unfortunately, there is no cure for this type of glioma worldwide, it occurs most often in children, but clinical trials can help take a biopsy and keep it alive while possibly administering other medications, which are Hope for us.
