God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
So…..things here have not changed much. Maddie continues to have the seizure-like episodes around the clock every day. It is particularly difficult to have a “normal” life because she has to sleep off each episode. So she naps after each one, with most of her daily sleep coming during the day. Nights have very little sleep, but usually have less episodes, so I enjoy hanging out with her even in the wee hours of the morning. It is very hard to imagine that we will have to live like this indefinitely.
For that reason, I continue to hope that what is going on is actually some type of seizure activity. Most seizures can be treated with medication, and that is a fate that is much easier to accept than that my beautiful baby will have abnormal brain activity that we can do nothing about forever.
All of the tests we ran to look for other causes for her abnormal brain activity came back negative. So we got our “diagnosis of exclusion”, that her brain is simply damaged from all of the chemo. No one has been able to tell us how exactly it is damaged and if it will resolve itself. So we are seeking a second opinion and will have an appointment with a pediatric neurologist at UNC next Wednesday. We are hoping that they can review the tests we have already run on her (rather than having to torture her with EEG leads being put all over her head again) and that they come up with a different answer than the doctor here.
There are alot of characteristics of her episodes that are very seizure-like, so we are truly hoping that it turns out to be that. We are still giving her seizure medicine, and though it has seemed to change some aspects of her episodes, it has not stopped them at all. But there are many many other seizure medicines we can try and we can continue to up the dose as well. We need a doctor to believe that she is having seizures before trying other drugs, especially since many of them have interactions with the chemo drugs that are of utmost importance to her.
The good news is that she is still in remission and she has periods of time during the day (or night) that she feels good. We are holding out hope that we will find some way to treat this “abnormal brain activity.” Please continue to pray for our sweet and amazing little girl. I will try to add pictures later today because she actually has some hair now and looks absolutely adorable.
Love to everyone,
Liz, Brandon, and Maddie