Desmoplastic Infantile Ganglioglioma - 9 month old girl

[MissAlynn]

On March 25th, our 8 month old baby had what I now know was a seizure. Her eyes had a still stare, and her mouth started turning blue. My husband took her inside and looked her over. She was tired and we were questioning what had just happened. Was she really blue? I think she had done something similar before in the middle of the night, so we thought maybe it was just a sleepy baby. After a perfect Easter Day, April 8th she did it again. Something was very wrong. We took her to the doctor first thing in the morning. The doctor ordered an EEG for Wednesday, but she had another episode that day after lunch. I was able to catch some of it on video to show the doctor. They immediately admitted us to Cox hospital where the MRI showed a tumor. We were flown to St. Louis Children's Hospital that evening. We were told she would have an operation to remove it, but after meeting with her neurosurgeon, he confirmed that the tumor was in a very dangerous location and we need to find out what we are dealing with. She was given a skeletal x-ray, lumbar puncture, blood tests, and finally a brain biopsy. We were sent home on April 15th. One week after the biopsy on April 20th, the diagnosis was given. Desmoplastic Infantile Ganglioglioma.

"The patient is a 9 month old girl who presented to an outside hospital with a two week history of intermittent staring spells associated with shallow breathing and periorbital cyanosis. MRI showed an heterogeneously enhancing intra- and extra-axial mass centered in the left Sylvian fissure, with adjacent cyst-like components, vasogenic edema, leptomeningeal enhancement, and dural thickening. The mass encases the left middle cerebral artery."

There stated is our biggest issue, "encases the left middle cerebral artery". Our neurosurgeon has an excellent reputation and had recommended we remove the largest portion and leave the encased section on the cerebral artery. The removal of the largest portion would leave her with a spastic right arm. It would not be usable and be curled up. If he removes the artery section it would also leave her leg unusable. Her memory, speech, and facial expression would move to the right side of her brain. The risk of stroke during operation is very high.

At this moment, our beautiful baby girl has no idea she has a tumor. She is happy, learning to crawl, and loves playing with her 5 year old sister and 4 year old brother. We are in a waiting period to do anything right now because she is still technically recovering from the biopsy. We are collecting all the information we can find on chemo treatments that others have had with this same treatment. I am so frightened of the chemo and what lies ahead for her. I want to be as informed as I can and make the right decisions. We have a couple second opinions we are waiting on this week as well. I'm looking for chemo or other treatments (not radiation) that will stop it from growing or even shrink it enough so she doesn't have to be on seizure medication. Right now, our last resort is the surgery, which ironically is the best cure for DIG. I think there must be at least 5000 people praying for our little darling. I don't want to make her sick from chemo that doesn't work, she seems so healthy and happy. She is still nursing, eats a mainly organic diet, and I have eliminated any sweet tastes of anything and also meat from her diet. You would never know she was sick if it wasn't for the stitches that go from the top of her fore-head down to her ear.

We are looking for any information that parents and caregivers can give us that actually works for a DIG.

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Update September 2012
Our daughter has been undergoing a non-traditional type of treatment that began in May 2012. Since her treatment began, she has shown a 56% reduction in her tumor. Her seizures have stopped and our biggest issue at the moment is a very large cyst that we are keeping and eye on. We are still interested in finding other parents and caregivers who's child has been diagnosed with a DIG. We know we could have a long way to go, by our daughter is healty and happy and we continue to do whatever we can to give her the best treatment and care.