Who is Lennard?

Lennard is an active, tough, cheerful boy of four years. A real big brother to his sister Judith.

Lennard’s story

Lennard has always been a healthy kid. On the 1st of May, 2014, he turned four, and he went to school for the first time. Nobody knew what was already growing in his tummy then. On the 8th of June we celebrated the birthday of Lennard’s mum Marleen. Lennard played happily and nothing seemed amiss.

On the 9th of June, late in the afternoon, Lennard started to complain of abdominal pain. “Nothing to worry about ” we thought, every child has a sore tummy sometimes. But at night the pain got worse, much more pain than we had ever seen before. The next morning we went to the GP first thing, and he referred us to the hospital immediately.

At the hospital (MST Enschede) they first thought it might be a case of constipation, then appendicitis or a hernia. The echo however showed that none of these were the case. We were rushed to the MRI.

We were approached by the pediatrician soon after. She told us that a large tumour had been discovered in Lennard’s tummy. We, as parents, simply cannot describe the anguish that this news gave us. The next morning we were in an ambulance, on our way to the Emma Children’s Hospital, AMC Amsterdam.

After several tests it became clear that Lennard had neuroblastoma (a childhood cancer). Due to the size of the tumor and its metastases, it is a fourth stage, high-risk neuroblastoma. As this type of childhood cancer is very aggressive, the need to begin treatment was urgent and we quickly started a series of heavy chemotherapy.

Lennard’s progress

From June to November 2014, Lennard has had six heavy treatments of chemo. Each course is approximately one week of continuous chemo treatment. In the meantime, Lennard had some stem cells removed to be used in stemcell therapy, to aid his recovery. Lennard has been incredibly brave, he’s a trooper! His ‘Trooperchain’ (Kanjerketting), with a bead for each treatment, has a length of over three meters now.

The treatment is working: the tumour has become smaller and the metastases as well. On 23 October, Lennard underwent surgery to have the tumour and affected tissue removed as much as possible. The operation was a success. In December 2014, Lennard was treated with a high dosage chemo course, with stem cell therapy. The results of all this very intensive treatment were in, beginning of January 2015: the cancer is gone!

The difficulty with this type of cancer is that it often returns, and when it does, it is very hard to treat it successfully. That characteristic of neuroblastoma makes it such a horrible disease. In January Lennard was be treated with radiation therapy to reduce the chances of the cancer coming back. And then on the 24th of February Lennard left for the USA to undergo immunotherapy treatment, again to reduce the chances of the cancer returning. Immunotherapy could double Lennard’s chances of survival!

Lennard, Judith and the both of us are extremely grateful for your help in getting Lennard to America for this potentially life-saving treatment.

Marleen and Karst Jan Luth