Friday, November 10, 2006 7:30 AM
Rebecca will have a new Video EEG (VEEG) done at Duke next week. We check in on Tuesday. The VEEG will entail having the electrodes attached to her head to monitor the brain activity – particularly the seizure activity.
There will be a button that David or I can push each time we see Rebecca having a seizure. This will make a notation in the recorded file so doctors can go back and compare the brain activity and know more about where in her brain her seizures originate from. The only downside for Rebecca to this will be that she will be somewhat limited in what she can do. There is a pretty long lead on the equipment lines, but she won’t be able to be as active as she is at home. She is quite good at rolling all over the floor at home.
Later this month we will meet with a Neurosurgeon to discuss the fact that the right hemisphere of her brain continues to grow larger than the left and is starting to cause too much pressure in her skull. Right now I don’t know much more than that. We also know that she has bi-lateral optic gliomas, which are directly related to Neurofibromatosis. It appears these have also grown. Although these are benign, we will be meeting with a Nero-oncologist to discuss options. Surgery is usually not an option for these types of tumors because it is nearly impossible to operate without doing more harm than good. I will try to keep everyone updated
Tuesday, November 21, 2006 2:07 PM
Well the hospital visit was much more long and drawn out than we planned. Rebecca had the Video EEG monitoring. She also had a PET scan and another MRI. We met with Dr. Gururangan (aka Dr. G) because of the bi-lateral optic gliomas found on the previous MRI. The new MRI done was to focus on this region. Since surgery is not an option with this type of tumor she will need to have chemotherapy to stop the growth (and hopefully shrink) the gliomas. Rebecca will have a portacath put in so the
chemo will be easy to administer. All of the chemotherapy treatments are scheduled to be outpatient.
However, before she can begin chemo the Neurologists and Neurosurgeon need to decide if there is anything that can be surgically done to help Rebecca’s seizures. So right now we are still in a hurry up and wait pattern. We meet with Dr. G again next week, any maybe by that time the Neruo team will have reviewed her EEG, MRI and PET scan and made a decision.
Tuesday, November 28, 2006 5:21 PM
We met with Rebecca’s new Dr today. Rebecca will start Chemotherapy next Thursday (December 7th).
They were actually able to get her in really quick for the surgery to implant the Infuser Port – that is going to be this Friday (December 1st). It will be a same day surgery if all goes well. Then Thursday, and every fourth Thursday thereafter for the next year, Rebecca will go to Duke for outpatient Chemotherapy. Chemotherapy is the single best way to treat this tumor type. Although it is benign, the pathology doesn’t matter. It is still a bunch of cells growing
and behaving in ways they shouldn’t. Her hair shouldn’t fall out, but she will be nauseous. She will get Nausea medication each time before her chemo starts. We will also have to get blood cultures done weekly. The nurse from Dr. G’s office is trying to work it out for us to go to the clinic over on Herndon
Rd for those, so we don’t have to come to Duke each week. The port, will be completely under her skin. Doctors will be able to administer medications through it, and use it for blood draws. It will save
her in the end from starting a new IV each week, and multiple sticks each time. Here is a great site with info on the Port – click on Subcutaneous Ports on the Right. Its a really neat Audio/Visual to describe it all.
Friday, December 1, 2006 7:11 PM
Surgery went well today. We were home by noon. Rebecca is very sore and very tired. She really doesn’t like anyone touching her – even holding her. I guess the first few days post-op we just move through the days as best we can. Each day Rebecca will feel better.
Sunday, December 3, 2006 5:06 PM
Here it is Sunday and Rebecca is already doing a lot better. She is back to playing almost normal – not quite 100%, but probably 80% or so. Just wanted to post a quick note to let everyone know she was doing so well.
Friday, December 8, 2006 7:38 AM
Rebecca had her first treatment yesterday for the optic gliomas. Ya know – the Dr’s and Nurses at Duke are great – but the system is horribly ineffective! First off, the woman at check in forgot to put Rebecca’s paperwork back there for the nurses, so the nurses never knew we where there. We waited over an hour before we were taken back. The woman claimed it was because things got so busy when we got there (I didn’t see all those people). So for a 9am appt, and what should have been 3 hours of treatment, we were leaving at 3:30.
Rebecca did pretty good while we were there. Mostly slept. Santa was in the Children’s Health Center and although Rebecca didn’t get to see him, one of his helpers brought Rebecca a present – a nice cute stuffed animal. Santa bought toys for all the boys and girls in the Health Center that day. Rebecca got sick around 9 last night, so David and I had to clean her up, and change her sheets. While changing her sheets, she got sick again. Then she didn’t want to go back to sleep. So she played in her crib for at least an hour. I got smart though and took out all the soft toys – just in case they were in the line of fire.
Already this morning she is playing and doing well. But then again, she just finished her bottle. We shall see how long it lasts in her tummy. I don’t know how these treatments are going to go in the long run – as far as keeping her occupied. Rebecca really wants to be climbing around and because the treatment area is really just a row of chairs anyplace for her to play. There are a few game systems and TV’s with VCRs for older kids
though. We shall see!