Before our 2pm appointment, the pediatric oncologist, radiation oncologist and neurosurgery have had a 1pm conference call to go over my daughter’s diagnosis. Cici has been diagnosed as Diffuse Intrinsic Pontine Glioma (DIPG). It is a rare and yet deadliest tumor almost exclusively find in children between age 5-10. In average, it represents about 10% (200 cases) of all brain tumors diagnosed among children each year in the US. The treatment plan is pretty standardized as there is no much of breakthrough in the past 30 years. It was agreed to combine radiation with chemotherapy. The pediatric oncologist explained to us that radiation normally has been very effective to control the tumor. However it is highly likely that the tumor will fall back after a few months. They have been trying to introduce different medicine to the chemotherapy. In the past 4 years, there are 2 out of 8 children survived over two years.
1/17 (Tue) – MRI
The MRI was scheduled at 11am at Children’s Healthcare of Atlanta at Scottish Rite. After one hour of picture taking. The neuro specialist called us to go back to his office immediately as he has received the MRI images and would like to discuss it with us in person. In his office, doctor emphasized 7-8 times “this is serious” in a short 30 minutes conversation. We know now our daughter has a brain tumor that is located right insider her brain stem. The doctor showed us the MRI image and point to us where the tumor located. It was about the size of a small lemon as the doctor put it. The doctor said he will arrange us to see the pediatric oncologist, radiation oncologist, and the neurosurgery tomorrow.
1/16 (Mon) – visiting the neuro specialist
At the request of the pediatric, we were arranged as a walk-in patient to the neuro specialist in this Monday afternoon. The doctor and the RN examined her and draw conclusion that she has something going on in her brain. It can be as simple as some kind of infection or as serious as brain tumor. Therefore the doctor arranged for next day MRI at whenever and whichever medical center is available.
1/13 (Fri) – Check up with family pediatric
Cici has been complaining about dizziness for about a month. She felt dizziness normally when she perform some of the ballet posture such as lift her head up while lying on her stomach. In the past two weeks she walked strangely as if she cannot coordinate her legs and tripped very often. She complained about blurry vision. She get car sick easily and vomit a couple of times in the past week. Therefore we took her to see the pediatric thinking there may be something wrong with her neck or spine. Pediatric couldn’t find any major issue with her but did agree to refer her to the neuro specialist. 