In July 2009, our five-year-old son Adam was diagnosed with High-Risk Neuroblastoma, one of the most aggressive and difficult to treat of all paediatric cancers. The cancer had spread from a primary abdominal tumour to bones, bone marrow and lymph nodes.
Over the past three years Adam has endured 14 months of chemotherapy, two rounds of internal radiation therapy, 3 stem cell harvests, a 7-hour surgical tumour resection, high-dose chemotherapy with stem cell rescue, 6 months of immunotherapy in Germany, and 11 months of oral retinoid therapy. His condition stabilised, but he was never clear of cancer.
In January 2012, an MRI scan done in Germany at the end of immunotherapy showed a suspicious lymph node in Adam's abdomen between aorta and vena cava inferior. However, the corresponding MIBG scan, the most specific test for neuroblastoma, showed no change.
In April 2012, a three-month follow-up MIBG scan showed significant disease progression in Adam's bones, and the suspicious lymph node was also now visible. Subsequent bone marrow biopsies revealed heavy infiltration. Our worst fears had been realised.
We had hoped to enrol Adam on a novel vaccine therapy trial being conducted in America. Adam flew out to Penn State, Hershey, at the start of May to harvest blood cells from which the vaccine is produced. However, with the level of bone marrow disease Adam has, this is no longer an immediate option. He started back on chemotherapy at the Royal Marsden and has completed two courses of Temozolomide and Irinotecan. Upcoming scans will tell us whether this has done anything to arrest the progression, and inform us as to what course of action to pursue next.
Whilst we are very aware that we are facing an ever more uncertain future we remain resolved to do everything possible for Adam, and will always remain strong together as a family.
You can follow Adam's progress at http://blog.adamsappeal.org.