We didn't really learn anything new from it. The cyst is still refilling, which is to be expected. The catheter is still in place, and everything looks okay for us to start Interferon next week.
We talked about the feedback from Boston, and Dr. Geyer said that the tumor board here had also discussed the proximity to the optic chiasm and didn't think there was impending danger at this point. With careful monitoring, we should catch any changes in time to get to radiation before that area is put in danger.
On Monday, we'll go back in to have her head shaved over the Ommaya reservoir site. They'll sterilize the area, apply some numbing cream and use a needle to pull a little bit of the cyst fluid that has accumulated through the Ommaya. Then they'll inject the same amount of dye back into the cyst. This test will make sure the catheter is functioning as it should and will work for the treatment. She'll then have a CT scan - awake - to confirm that the cyst isn't leaking.
I'm not sure how well the CT scan will go. She's never had one unless she was already under anesthesia. They said I can hold her throughout the procedure and that it's pretty quick, but Summer has a reputation for fighting pretty much anything the doctors and nurses want to do. They may have to give her some sort of sedative to help her calm down. We'll see.
Then the plan is to start treatment on Wednesday afternoon. They'll withdraw as much of the cyst fluid as possible through the Ommaya and then inject a small amount of the Interferon into it. That will be the first of 12 treatments, which she'll have every Monday, Wednesday and Friday.
Yesterday I googled 'intracystic Interferon' (for about the millionth time over the past few weeks) and my blog came up on the first page of Google results. Hard to believe that the treatment we're about to start is so uncommonly used that my blog is one of the best hits...
Most of the information out there about Interferon is for systemic use, which is a much larger dose given intravenously, and affecting the whole body. It does have more side effects, but compared to other drugs they're pretty minimal. When given in a very small dose directly into the cyst, the only side effects we might see are flu-like symptoms: fatigue, fever, weight loss, loss of appetite and behavioral changes. These side effects will go away once the treatment is done.
We got home from the hospital at about 10am this morning and kicked off the birthday festivities:
|"Happy birthday Mommy!"|
|It's a surprised bell!|
|A walk to the store|
|Testing out the trike|
|She did not want to wear a helmet!|
|Someone gave Summer this amazing hand-me-down gift. She was very excited! Can't wait to play with it more tonight.|