The current situation

In the past months Robert’s situation got worse with more frequent visits to the hospital which led to the conclusion that he needs a surgery as soon as possible and Raul also was hospitalized in the same time. The surgical care it is very complicated and requires 3 steps within 6 months.

Raul was hospitalized since September last year with just small breaks of recovery. The thing did not go as expected and regarding all the protocols, and now after we finished the 5th course of chemotherapy we are waiting for the moment when he will be ready for surgical care where the tumor will be removed. The biggest problem now is metastases to the Liver, which are stubborn enough to not disappear, they even have multiplied. The surgery is used to remove the primary tumor of the adrenal gland that disseminates malignant cells. The treatment for Raul is going to be long, complicated and the results are unpredictable and with high-risks. We do not know what to expect.

Here is the article that made as take the decision to go to Tübingen in Germany, where we found a medical center with a department that participates in German multi centre trials, but is also active in the evaluation of new treatment approaches, especially for children with neuroblastoma, leukaemia, and other solid tumors:

Neuroblastoma in Romania, where we are and what to do:

POPOIU M. C. , DAVID V.L. , BOERIU E. ,POPOIU A.V., ARGHIRESCU S.,VLADESCU C., CHIRIAC N.D., MUSAT S., BOIA E.S. 

1) Victor Babes University of Medicine and Pharmacy Timisoara, Romania
2) Louis Turcanu Emergency Hospital Timisoara, Romania
3) National School of Public Health, Management and Improvement in Health Bucharest, Romania 

Compared with other countries, especially the U.S. [2], the incidence NB is three times higher in Romania (3/100000). Survival rate is 22% in our country, compared to Western countries, where rates of overall survival is greater than 50% [5]. These differences may indicate a reduced capacity of the health system in Romania to manage such complex diseases. From the large number of cases hospitalized (about 200/y) to NB, only 10% support curative surgery. We can speculate that the remaining 12% of survivors are treated outside Romania… This could mean that the NB medical care in hospitals in Romania should be much improved. The main cause of these results is pediatric care. It is necessary to improve diagnosis and staging system, on the one hand and on the other hand, sequence and treatment methods should be standardized.

Below is the opinion about the treatment of neuroblastoma in Tübingen University Clinic where we get our hopes: Under current general consensus, the affected children should be treated and have surgical care in centers with proven experience. Pediatric Surgery Clinic Tuebingen, Department of onco-surgery that specializes in this type of disease, has the necessary prerequisites for surgery. The experience is proven to treat these high-risk cases, treatment which involves as with other tumors, stem cell transplant and assisted respiration.

These days we managed to get a cost estimate for Robert's surgery from those in Tübingen.

Unfortunately for Raul we still have no idea how everything will go, but we estimate from those who have been in Tübingen for various tumors surgery. I try hard to get an estimate for him, but the situation with Raul is more complicated because in addition to surgery, it may require more courses of chemotherapy, MIBG therapy that uses radioiodine labeled metaiodobenzylguanidine with possible autologous stem cell transplant. It all depends on the evolution of his disease. In addition we need another MRI evaluation because the last one was 4 months ago.