After 3 weeks of vomiting upon waking and a few days of progressively worse fatigue, we took Luke to the ER on February 15, 2013 where a CT scan revealed a large mass in his brain blocking fluid draining from his third ventricle. The blockage increased his intracranial pressure and was causing the vomiting. Our mystery was solved and our lives were turned upside down! After transferring to Children’s Hospital of Philadelphia, an MRI revealed more precisely the size and location of Luke's tumor. It was large and involved not only his third ventricle, but also his pituitary and hypothalamus glands as well as his optic nerve. Luke had a 9 hour surgery to debulk the tumor on February 22nd. His neurosurgeon was able to remove about 50% of the tumor!

Following the removal of external drains a few days post surgery it became apparent that the tumor damaged his ventricles so that he was unable to drain adequate levels of fluid and maintain a tolerable pressure level so he had surgery to place a VP shunt (permanent internal drain).

Luke’s tumor is a pilomyxiod astrocytoma (PMA), grade II. Because of the location and the inability to surgically remove all of it, as well as the type of tumor, this will be a chronic condition for Luke and we are told to expect he will have periods on and off treatment for life. The initial treatment is chemotherapy, which he started in April 2013 and is scheduled to last at least 58 weeks. It is outpatient once weekly in cycles of 4 weeks on, 2 weeks off. Since beginning chemo he has had 3 MRIs and all show signs that this protocol is working to control the tumor at this time. Our prayer is that he continues to tolerate the chemo well so that he is able to complete the full protocol as scheduled and that upon completion it gives him a long period of tumor stability so that he can enjoy time off of treatment.

In addition to chemotherapy, Luke also sees a physical therapist twice a week. His surgeries and extended period of rest during recovery caused muscle fatigue and the loss of muscle tone. He has regained much of it but the effects of the chemotherapy are taking a toll on his muscles and strength as well. Luke has a vision field cut (loss) in his peripheral vision due to the pressure his tumor is putting on his optic nerve so he sees a Neuro-Ophthalmologist to monitor his vision.

Luke celebrated his 4th birthday in September. Through all of this Luke remains the silly, easygoing little boy that our family loves. He enjoys playing with his big brother and doting on his little sister. He attends preschool two mornings a week and loves playing outside.

Luke finished treatment on April 28, 2014 and is looking forward to enjoying the spring!

Erin Vollberg
May 2014