Apr 30, 2012 - 10:55 pm
My 16 yr old daughter was diagnosed with a PNET-- WHO grade 4-- in February 2012. It is on (in?) her left temporal lobe. The actual tumor ruptured and caused a massive brain hemorrhage, so she had emergency surgery on Feb 9. Follow up MRI showed that the "fingers" of the tumor are still there, but because of it's location they were hesitant to remove it as we had a 20% chance of permanent paralysis if they did. She has just completed 6 weeks of cranial/spinal radiation (that SUCKED) and 6 weeks of Vincristine. She now has a month of recovery time before starting the nasty stuff June 7...Cisplatin, Cyclophosphomide and Vincristine together for 8-10 months. She has an MRI and Lumbar Puncture scheduled for June 1 to see if the first phase of treatment worked at all, but her initial LP showed ZERO metastases so I am optimistic. She has a fantastic attitude about everything and is honestly an absolute trooper. Unfortunately she has been unable to attend school since her treatments were 5 days a week and an hour away from home, plus she has cognitive issues steming from the original surgery and the treatments. I hope that we will be able to send her to school in September so that she can graduate with her class next year! It is exhausting being a full time single mom, with one sick teenager (and a 13 yr old too), trying to work full time and be her caretaker, but for my child I will do anything.