At Tubingen with Robert

Here we are with Robi at Tubingen.

On our arrival here we are welcomed with wide open arms by a Romanian, a great person, her name is Laura and I want to thank her for all the warmth she gave us and hosting us in our first day there and also for all of her kindness throughout our stay so far.

On the first day of hospitalization, in our room we met a family, half Romanian, very nice by the way, which helped us with all the translation of the long stories about the disease history. Anyway, almost everyone speaks English here or at least understand, except for the Patient Registration Representative lady…

The first day in the hospital we got to know better the building and the surroundings, the nurses, the rules, the play room and I got to understand how everything works here. Conditions are incomparable with what you can see in Romanian hospitals. Among other things, cleaning, everything has to be disinfected right at the entrance, our room is as big as an apartment and has two adjustable beds with a nurse call button, with a nice bathroom and then a kitchen at the end of the main hall, where you can find water, juice, jars of food for children, diapers, wet wipes, all at your discretion. But the most important are the people here, very kind, smiling and willing to help without expecting something in return, they look to be happy with what are they doing there and not with that attitude like they are sick to be there for you and or just because it is a must or because they want to get away quickly from the care they have to provide for patients.

Across the hospital are playgrounds and special places, interesting for children, like an aquarium, a train, bus, a cage with a lion, boats and all kind of models. After lunch we went outside for some fresh air and we stopped at the playground near by.

The next day Robi was scheduled for a barium enema test, which unfortunately could not be done because Robi was not prepared in advance for it and his colon was full, so could not introduce the liquid containing the barium sulfate which is a type of contrast material that highlights specific areas in the colon, creating a clearer image. It was interesting that every time when we were sent in a who knows part of the hospital building we discovered new playgrounds and stopping a little bit at each one of them made Robi to feel a great joy! Also today we met another Romanian lady Elvira, nurse anesthesiologist, and we are assured that we can rely on it both for translation and for any problems. In the salon meanwhile moved a family with a boy diagnosed with neuroblastoma and just had surgery for resection of the primary tumor in the right adrenal gland. I had the opportunity to find out how it works here in oncology and compare with what is in Romania.

The third day was the worst, with several rounds of crying since morning enema, continuing with barium enema and ending with couple attempts to insert a cannula. Then I got to talk with the doctor about the surgery which is scheduled for tomorrow, about the risks of anesthesia, the need of ileostomy and after I felt like my heart is getting smaller and smaller… having a lot of thoughts about what’s next. We found that it could not be megacolon, but the biopsy will reveal this. Skipping the walk we had in plan, around 6 PM we went straight into bed and slept.

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.

Our story…

I will start with the beginning when our eldest son, Robert, who though suffering from a less severe disease than our youngest son, on long-term the effects can be as serious.

Robert

After 2 ½ years of waiting  our first son was born, Robert. Between the fifth and sixth months problems began appearing with constipation and visits to doctors. All in vain because when Robert was close to one year old we got to the emergency room and there after a series of mistakes and misdiagnosis we were sent to intensive therapy for blood transfusion, but packed with high-risk of losing the baby. He was hospitalized for 10 days and here we heard for the first time about the diagnosis of congenital megacolon(Hirschsprung’s disease) and subsequently toxic form.

 Megacolon is abnormal massive dilation of the colon. Congenital megacolon (Hirschsprung’s disease)  is caused by the absence of autonomic ganglia in the smooth muscle wall of the colon. Toxic megacolon is a grave complication of ulcerative colitis and may cause perforation of the colon, septicemia. Colonoscopy and surgery are the usual treatments for toxic and congenital megacolon. ut Therefore with the massive dilation immediately appears the severe constipation. Besides all this he has intolerance to milk as a manifestation of the disease. The biopsy and the imaging did not confirmed 100% the disease therefore the option was to not go for a surgery for now, but to stall up to 3 years and see how the child develops. We accepted the situation at that time, especially that the risks of surgery were quite large, namely the anus against nature and the chance to to lose the conscience temporarily or permanently. In addition,  the laparoscopic surgery can not be done here also they don’t do a extemporaneous examination of the area to be cut and everything is done by eye.
Then we decided to go with Robert in Hungary for more tests, but… We went also to Bucharest to a physician experienced in this disease, he came from Germany, but all to no avail certain. The boy is now 1 year and 10 months and it's getting harder and harder to stall. In most mornings everything is normal but by the evening time his belly will be distended. There are days when he can not pass stool at all and days when is a lot less than normal and needs stimulation with drugs and/ or enema. From time to time we have to go to the hospital for high enemas to clean the entire large intestine. Between Christmas and New Year because of a respiratory infection and constipation Robert got again at the Emergency Room… he was crying, trembling, having a hard belly, fever and his lips color turned to a purple one. We got very scared given his similar condition to that of April 2012 prior to reaching the Intensive Treatment Unit.
It's more than hard to see him like this. It is difficult with his nutrition too, given his milk allergy.


Raul

After 7 months since Robert came into this world my wife got pregnant again, and in that moment we had no idea what was waiting for us. With routine checks during the pregnancy and a C-section at the end Raul was born. After 2 months he had a vaccination schedule with our family doctor and when she saw him she sent us right to the Emergency Room. In just a few days, he had a swollen abdomen, condition reached quite suddenly. In the ER we had to be very insistent and to strife a little bit, then they performed a ultrasonography for Raul and we end up being hospitalized with diagnosis of hepatosplenomegaly. In the first week of hospitalization his condition got worst, the liver has increased 4 times, the child strongly swollen from abdomen down and we thought of losing him. We spent some time in the Intensive Treatment Unit where our son underwent for a liver biopsy.

Three weeks later the diagnosis arrived, namely neuroblatoma metastases to the liver. Our dismay was based on what the doctors said, they did not know if they will have enough time to investigate more, but still gave him chances. Above all the Cytomegalovirus infection complicated the things even more and increased thne risks. It seems that the virus was transmitted through the placenta during pregnancy somewhere in the second or third trimester. My wife got the virus from the hospital where she and Robert were hospitalized for a week.
Basically neuroblatoma is a tumor that originates in one of the adrenal glands, in Raul’s case the tumor affected the right adrenal gland with dissemination to liver. Then based on nb2004 protocol the chemotherapy started. After three courses of chemotherapy liver volume has decreased, but still seems that the metastases have increased… now we started the 5th course. It is the most powerful cure that can only be given after the baby is 6 months old. Already Raul has his hands and his face swollen and hardly resists. The risks are so high and we are blown.
Depending on the evolution of the disease, according to the protocol, we can plan for an adrenal tumor removal surgery in a few months from now. The surgery would be performed at Tübingen University Clinic, Germany. If we can get the needed European form for that, the insurance company in Romania will bear some of the costs but not entirely. We have to get around somehow. We found out from others who were there for the same type of surgery, that the costs will be around 50,000 Euros. We'll find out for sure in the near future.

I am entirely disappointed by Romanian medical system. Many times we could have lost our children because of the negligence, carelessness, lack of equipment and professionalism. But I met sensitive people and special people in the system, but few, too few... I would like to give special thanks for their professionalism, compassion and warmth to the following doctors: prof. Boia, dr. Boeriu, prof Simedrea, dr. Stanciulescu Corina, dr. Cucui Cozma Cosmina.