Giving Luca his future back

The Journey

In February 2014, one month before his first birthday, we noticed that our son Luca’s gums were swollen. We suspected that there was a problem with his teeth coming out and took him for his first dentist appointment. The dentist examined him, suspected it could be something more serious, and sent us to the jaw surgeon, who eventually sent us on to the oncology ward. They booked an MRI scan for the next morning, and on Tuesday 21rst of February 2014 at 15:00, an atomic bomb went off in our hearts. Having suspected nothing only 24 hours before, we were told that he had a malignant tumour in his jaw. Cancer.

Eventually we would also find out that this was a metastasis and that he also had a tumour in his abdomen. He was given the diagnosis High Risk Neuroblastoma, Stage 4. Neuroblastoma is one of the most aggressive forms of paediatric cancer and accounts for around 15% of all cancer deaths in children. Luca’s diagnosis also includes something called a Myc-N amplification, which indicates a yet more aggressive version of the disease.

During one and a half year of treatment, he went through 11 rounds of chemotherapy, surgery, stem cell transplant, radiation therapy, accutane treatment and immunotherapy. He went through all parts of the often-excruciating treatment like a superhero with magical powers, without any major complications or measurable long-term side effects.

We then got 9 months of heavenly normality with our little fighter, only to find out, in April of this year, that the cancer was back.

There is no protocol for relapsed Neuroblastoma. Since the prognosis is so low and treatments so toxic, until recently the norm has been to not treat at all, or only give palliative treatment. After a lot of research and discussions with his oncologists, we nevertheless decided to join a study for relapsed Neuroblastoma (BEACON) that was showing promising results in terms of reaching remission again. On the trial, he received 6 more rounds of chemotherapy together with another 14 rounds of radiation treatment.

In September this year, we found out (thank God, Allah, the Universe and who or what else might be involved) that he is in remission, again!

However, while the aim of the relapse treatment has been to reach remission, his oncologists have been very clear with us from the beginning that this will not be enough. Once relapsed, the disease keeps coming back. This fact is what accounts for the low prognosis for relapsed Neuroblastoma. At the same time, the oncologists say that there is nothing more to be done in terms of treatment to reduce the risk of another relapse. He has been given everything there is available in this part of the world to treat the disease, and now we are out of options.

In Memorial Sloan Kettering Cancer Center in New York, ranked as the “best hospital” for cancer care for the past 25 years in the US, however, there is a vaccine that in a phase I trial with a small number of children has raised the dismal prognosis for relapsed Neuroblastoma from 10% to closer to 80% (for more information on the trial, see; for an academic report on available findings, see…). The vaccine continues to be tested in a phase I/II trial and we want Luca to be a part of it. While his oncologists in Sweden support our decision, we cannot be given any financial support for participating in a trial, which is why we are doing this fundraiser.

All through his treatments, Luca has never lost his energy, spirit and happiness for more than short periods at a time. He is an amazing inspiration to all of us, and even today he still astounds the most jaded hospital staff with his calmness during difficult times and joyfulness during long and tedious treatments.

We would be eternally grateful if you could help us collect the money we need to take him to MSKCC. He is the love of our lives. He is our life. Please help us give him his future back.

Love, peace and health to all,

Erika & Umut, Luca’s parents

PS. Any money that we collect and don’t use, for any reason, will be given in full to Barncancerfonden (The Swedish Childhood Cancer Foundation) – or any other institution dedicated to cancer research in line with the wishes of top donors.

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