Lennard’s illness and treatment

Lennard’s neuroblastoma, or ‘the ball in his tummy’
In June 2014,  Lennard was diagnosed with neuroblastoma. It was a large tumour, about the size of a large grapefruit , and it had metastasised as well. Lennard’s neuroblastoma is therefore classified as stage 4, the most severe category. Fortunately, the tumour does not have the aggressive n-myc gene. Under ‘What is a neuroblastoma‘ you can read more about this form of childhood cancer, and also about the chances of recovery. These are generally not very high, and we want to be clear about that. But we prefer not to focus on the numbers, because every child is different.

Lennard is receiving intensive treatment with very heavy chemotherapy in the Emma Children’s Hospital AMC Amsterdam. Each chemo treatment lasts about a week, during which time Lennard must remain in the Pediatric Oncology department. The chemo often makes him very sick, and he has also lost his hair. His immune system has weakened and his blood count is deteriorating, so he can easily get ill and can, for example, easily develop big bruises. Lennard and his parents Marleen and Karst Jan have to be very careful, and emotionally it’s incredibly hard to see your child so vulnerable.

The “MIBG” treatment with radioactive iodine would have unfortunately not had much effect in Lennard, therefore he is not receiving this kind of treatment. The tumour has fortunately responded very well to the chemotherapy, and became much smaller very quickly! The metastases were also much reduced in number and in size. Lennard is getting extra nutrition via a gastric feeding tube, which helps him to stay strong. If his blood counts are too low, he sometimes gets a blood transfusion. Also, stem cells have been extracted from his blood so that the doctors can place these back after the high-dose chemotherapy, to aid with Lennard’s recovery. Harvesting the stem cells actually went very well; at the first try the doctors were able to extract almost twice as many stem cells as they will likely need!

Little medical miracle
The doctors and medical staff are pleasantly surprised by Lennard’s mental strength. Of course all this is no fun, chemotherapy can hurt and can make you feel very sick. But Lennard is always happy to joke around with the medical staff. He’s joking when he’s entering the Pediatric Oncology Department, and no matter how sick and weak he may feel after chemo, he is still joking and smiling when he leaves. The doctors and medical staff therefore call Lennard our little medical miracle…

Going to the USA
Lennard does understand that he is ill, and he calls his own neuroblastoma ‘the ball in my tummy’. On 23 October the tumour and affected tissue were removed (about 95 per cent) in a very heavy and long operation; an important day! But Lennard’s recovery from this operation was again incredibly quick, so quick in fact that he was allowed to go home within a week. Then difficult weeks followed with high dose chemotherapy. This part of the treatment has a severe impact on Lennard’s health. Lennard receives stemcell therapy to help him recover. After a month of getting better, slowly but surely, tests are conducted to see the results. And in the beginning of January, wonderful news: Lennard’s cancer is gone!

The difficulty with neuroblastoma is that it often comes back. When it returns, it is very hard to treat successfully. Lennard receives radiation treatment to reduce the chances of the cancer returning. The treatment in Philadelphia, immunotherapy, is also aimed at reducing the chances of the neuroblastoma coming back.

The doctors and medical staff were very confident that the little medical miracle called Lennard was going to make it to the USA, and they were right: Lennard and his family departed for Philadelphia on February 24th. They will have to remain there for about 6 months to undergo this very heavy immunotherapy.

Getting Lennard and his family to the USA for treatment has been made possible by dozens of fundraisers and hundreds of donors. On behalf of Lennard’s parents, we want to express our infinite gratitude for your help and support.