Diagnosing Haven Haven Fowler, now almost 5 years old, began her journey at age 2 1/2 years old. She gained 25 pounds in one month and was taken in for blood work on her thyroid which ultimately came back fine and she was put on a diet. Another 4 months went by and she had gained 15 more pounds and had more blood work with a brain MRI. Still showing normal she was put on a 1,000 calorie diet. By age 3 she was constantly complaining of stomach pains and constipation. When blood was found in her bowel movements she was taken back in to the doctor. Another brain MRI and another normal report. She met with a Pediatric Neurologist to be tested for Autism. By age 3 1/2 Haven's left eye had turned out and she underwent another MRI which again was normal. At that point Haven's family moved from California to Maryland to try to get in to Johns Hopkins. Within a month of the move Haven had a 45 minute seizure with a heart rate of 200 and a blood pressure reading of 180/96. Emergency crews were ready for her to go in to Cardiac Arrest and rushed her to the hospital. After a CT Scan she was then transported to Johns Hopkins. Haven underwent many tests and met with Neurology, Genetics, Pulmonology, and Endocrinology. Ultimately she was taken in to the care of Endocrinology for testing of Cushing's Syndrome and checked for a Pheochromocytoma tumor. In December 2007, she was ultimately diagnosed with Neuroblastoma Cancer, Hypothalamic Dysfunction, and Paraneoplastic Syndrome. After nine months of Chemotherapy, Haven was officially diagnosed with Ganglioneuroblastoma Cancer and ROHHAD.
Haven's Isolation
Haven is now in isolation undergoing extensive treatment in the hospital. Once Haven leaves the hospital, she (and her family) is required to live in a clean house for 3 ½ months. She will be required to go to clinic 3 days a week and will have a home nurse two days a week.
Haven's Roadmap
For the next 3 years she will remain in Oncology and will have constant bone marrow withdrawals, MRIs, CT, sleep studies, DNA phenotyping, labs, and more. She will be monitored for her Neuroblastoma, ROHHAD, and any developments of Leukemia.
For more information about Haven and her family, visit Haven's Site
What is ROHHAD? Want to learn more, click here.