Oscar needs your help!
In August 2016 Oscar started to complain about leg pain. At first, we believe he has been tired after playing and running the whole day in kindergarten. After a couple of days, he started to limp and to wake up at night with pain. Logically, we imagined that it could be growing pain. He was the tallest in kindergarten and that was not uncommon in that age. Somehow “sixth sense” kicked in and told us to double check with the pediatrician.
I still remember what he said after the first examination: “out of ten possible diagnosis, “growing pain” would be my last guess. That phrase changed how we looked into Oscar’s situation. He immediately prescribed Ibuprofen twice a day, called the hospital and put Oscar in the waiting list for a MRI.
Unfortunately MRIs for babies and young children have to be made under anesthesia since they have to be completely still. Normally there are limited options for this type of exam in Frankfurt. We waited 3 months for an appointment.
The months after that were for us parents torture. We had decreased the hours in kindergarten since he didn’t feel good or had fun. Took him to several different doctors while waiting for the MRI, did many exams and investigated all other possible causes of the pain. Ibuprofen was increased to four doses a day and even that didn’t take his pain away.
On Christmas 2016 – to be precise on December 23rd, Oscar (at this point 3 years old) was diagnosed with Neuroblastoma stage 4. He had his primary tumor at his left adrenal gland and metastasis at the lower leg, thigh, hips, spine, shoulders, skull, and bone marrow.
Obviously, we had no idea what that meant and what would be in-front of us but we knew the situation was serious. Oscar simply couldn’t move without painkillers and even that was difficult for him.
After that everything happened quickly: on 23rd December we left the hospital to celebrate Christmas at home just to return to the clinic on December 27th when Oscar received his Hickman catheter. On December 30th Oscar already got his first first dosage of the first block chemotherapy.
The plan was clear 6 blocks chemotherapy, 1 tumor surgery, 1 high dosage chemotherapy and a stem cell transplantation.
After the 4th block of chemotherapy, a 6 hours surgery was performed in which the tumor and surrounding healthy tissue were removed. That meant for Oscar that his left Adrenal Gland was completely removed.
The last 2 blocks of chemotherapy came right after and after the high doses chemotherapy followed by stem cell transplantation.
This high doses chemotherapy aims to wipe out the bone marrow through. Without a bone marrow, our body cannot produce red and white blood cells. In Oscar’s case, the goal was achieved and he received his own stem cells (that were previously harvested and processed).
Afterwards we had to wait for several weeks in complete isolation, in which we couldn’t even sleep next to Oscar during the night, for the immune system to get itself back in place.
After all that was successfully done Oscar was considered NED, No Evidence of Disease, in September 2017.
The joy and happiness was unbelievable and after the Hickman catheter was removed in a little surgery, soon Oscar was off to a somehow regular life including Kindergarten.
We obviously had to go to the clinic weekly for check ups, but the day Oscar returned to the kindergarten after a 10 month break, it was party for all of us and his friends.
But the party didn’t last long – in February 2018 the monster was back. During a routine check up, a new tumour was discovered, this time at his rib. The shock was gigantic as we still remembered the words of our doctor from stem cell transplantation: “…your real worries just start in case the tumor comes back.”
What followed was another 4 hour surgery including a stay at the ICU. Afterwards 15 rounds of local radiation, a MIBGs therapy.
During a MIBG therapy, the patient gets radioactively contaminated thru a IV and must stay in complete isolation. The radiation destroys then tumor cells from the inside of the body.
After that, we started doing a different chemotherapy regimen called RIST. It is still a study and combines 3 chemotherapies with other medications. This is an ambulant treatment so we would go to the day clinic from Monday to Friday for a couple of hours during one week and take medication at home during the other week.
The treatment progressed to a combination of chemotherapy and immunotherapy with a drug called Dinutuximab. We did several rounds and that stabilized Oscar’s condition. The doctors then suggested a target therapy (a pill that would block the production of certain enzymes needed to our specific tumor).
All that plus hundreds of blood tests, permanent nausea, hair loss, digestions problems, loss of appetite and others side effects Oscar had to endure over the last 3 years. Still he is full of happiness, energy, positivity, strength and love. He is an example for kids and adults in how to handle and deal with a disease like that.
But the fight is not over yet, there are still metastases in Oscars body and we have to do everything to fight and eliminate them.
And that’s when your help is needed:
There are new forms of therapies which enable your own immune system to detect and destroy Tumor cells. Even though Oscar did such a therapy already, there are new forms which are very promising.
The catch is: they have been developed at Memorial Sloan Kettering Cancer Center in New York and are still on the stage of a study and not an approved medication yet. In Europe they are available in Barcelona, Kopenhagen and soon in U.K.
Although the study has been performed since at least 30 years and saved the life of many kids, the costs for it are not paid by the German health insurance. The first quotation of the hospital in Barcelona has a value of app. €200.000 or $250.000. That would cover 7 blocks of the immunotherapy with a drug called Naxitamb which is produced by Y-mAbs Therapeutics.
After that, a complementary treatment would be vital. The Memorial Sloan Kettering Cancer Center developed a vaccine which would teach Oscar’s body to recognize any Neuroblastoma cells and attack it. This vaccine would reduce the chance of Oscar to relapse once again.
And exactly for that we need your support and donation, because otherwise we cannot start this potentially live saving treatment for our son Oscar due to missing financial funds.