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Our little cancer fighter Jonas

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*Nederlandse vertaling volgt * Wkrotce Polskie przetlumaczenie 

Wednesday, 26th of August will be a day that we will never forget, as this is the day our biggest nightmare became our reality. Within 24 hours we have visited 2 hospitals with our son Jonas (8 months old at that time). What first looked like stomach flue, turned out to be the most terrifying diagnosis.

Jonas started to cry a lot (which wasn’t new to us), but he started to refuse any solids and liquids and he seemed very uncomfortable. When he started to vomit, mother instinct told me to take him to the hospital. Usually we aren’t that easy in going to hospitals, but because he wasn’t taking any liquids and vomiting, we were afraid he would dehydrate.

Thank God for this mother instinct. If it wasn’t us taking Jonas to the hospital and if it wasn’t for the doctors being very cautious and requesting an ultrasound and X-ray anyway, the scenario would have looked a lot worse. It was a blessing in disguise. It was found that Jonas had a tumour by his right side measuring 4 cm by 4cm. The doctors couldn’t tell what stage of cancer Jonas has and were not able to tell us where the tumor was growing from, his kidney or adrenal gland. They suspected either Wilms’ tumor or neuroblastoma. However they advised us to do a broad spectrum of tests to be able to diagnose Jonas’ tumor precisely as soon as possible.

Thursday morning we found ourselves at the ER of Erasmus Medical Centre. Jonas received antibiotics and was given a blood transfusion. A new ultrasound was performed and the oncologist there could tell us the tumor was coming from Jonas’s right adrenal gland. They suspected neuroblastoma. The following day Jonas was transferred by ambulance to Princess Maxima Centre in Utrecht. This is a new specialized centre where all children with cancer are being treated.

It took a very long 7 weeks to hear Jonas’s diagnosis:  Adrenal Cortical Carcinoma (ACC), a very aggressive type of cancer, Jonas’s stage was unknown. It took so long to diagnose Jonas as the doctors first suspected neuroblastoma. ACC wasn’t their first thought because it is a very very rare type of cancer, with incidence of 1 in a 1.000.0000 annually. With Jonas’s age the incidence is even smaller, 1 in 3.000.000. Because it took so long for the doctors, we weren’t surprised that the tumor measured 7 cm by 7cm by now. The PET scan and biopsy revealed that Jonas’s tumor was growing at a rapid pace because there were dead tumor cells within the tumor itself, meaning the tumor is growing so fast it didn’t even have the time to provide blood vessels for its own cancerous tumor cells. The PET scan revealed no distant metastasis.

2nd of October was surgery day, 4 surgeons would remove Jonas’s tumor. It was a very important surgery, because only when the surgeons were able to get the tumor out without rupturing, his changes of life expectancy would significant increase. After 4 hours, the surgeon called us with bad news: The surgery appeared to be more difficult than initially expected. Jonas’s tumor was very much adhered to his diaphragm and his kidney. A very important right kidney artery vessel (right renal artery) was hit and they couldn't save it anymore. His right kidney will most probably stop functioning. A large part of his diaphragm and a piece of his liver were removed. They also removed some lymph nodes because they looked irritated and the surgeon told the pathologist to check for metastasis. The worst news of all was that the tumor ruptured during the last stage of removal. Because tumor cells spilled in his belly, Jonas has stage 3 cancer.

In the meantime Jonas was having a very hard time dealing with hospital life and appointments. Jonas has become so traumatic of all the syringes, measurement, physical checks, anaesthesia’s and pain, that it is so hard for us to comfort him in anyway. Cancer is unfair but especially to those who can’t even tell what they are feeling. It is not only stressful to Jonas but to us parents as well. I will never get used to Jonas’s resentment against anaesthesia but within 10 seconds I can lay down a limp body, only kiss him on the cheek and walk out the room with his beloved pacifier, while praying. Every time tears are running down my face.

After 9 weeks of being at PMC we received a call from the clinical geneticist. Because Jonas’ tumor is so rare an underlying syndrome could have caused Jonas’s tumor. Unfortunately this was confirmed, Jonas has Li-Fraumeni syndrome, a genetic disease. Li–Fraumeni syndrome is characterized by an early onset of cancer, a wide variety of types of cancers, and development of multiple cancers throughout one’s life. .  This syndrome is a defect in the TP-53 gene. This gene normally fights rapid growing cells that could potentially become cancerous. Jonas's cancers was a result of this defect and has a 95% reoccurrence rate. This means that Jonas will be put under a strict control for the rest of his life. He will not be allowed to have CT/PET scan and X-rays anymore because these type of radiation does encourage rapid growing cells. Jonas will have mainly full body MRI's and ultrasounds. Jonas will never have careless childhood, hospital visits will be normal to him.  

An aggressive cancer calls for an aggressive treatment. Jonas’s aggressive treatment is one of the hardest protocols for children and we were told by the doctors that many of them don't make it past the 4th or 5th treatment due to the side effects. Jonas will undergo 8 rounds of IV chemotherapy and will have to take daily oral chemotherapy, mitotane. The side effects of the chemo on his body are tremendous and we just pray they cause minimum damage to Jonas. Jonas is not doing well. After the first round we have been twice inpatient due to a fever. The blood cultures come back negative each time, so we do start to worry a little. He already has a NG tube placed, so it is fortunately not a battle anymore to administer his medicine and 

We want to reduce the toll that chemotherapy has on Jonas's body and we want to prevent the development of new cancers or reoccurrences. We always believed in a healthy lifestyle and we believe in alternative medicine alongside conventional medicine. In Jonas's case we have nothing to lose and we will try everything for him so that he can live a healthy happy long life.  As we started to look into alternative medicine, a mom to a son with the same type of cancer as Jonas and with the same TP53 gene mutation recommended us an integrative Doctor. We are now gathering all the information needed for the integrative doctor, however we already stumble upon some difficulties. The doctors here don't want to cooperate with us on this matter and don't agree in taking some blood tests that we really need for the alternative doctor. Those specific tests are not done when there is no indication to do such tests.  However we will still try to go this route and will try to implement as much integrative medicine as possible. However the integrative care will be very expensive and will not be covered by the insurance.

This fund is set up to ask for help in any sort of way, whether through prayers, thoughts or financial help for integrative care and any other care that Jonas needs. We are thankful for anything! 

 We believe in miracles.

Annet (& Reinoud) (Jonas’s parents)
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Donations 

  • Teresa Barneveld
    • €100 
    • 1 yr
  • Robin Hoogendoorn
    • €20 
    • 3 yrs
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Organizer

Annet Juscikowski
Organizer
Hellevoetsluis, NL

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