We received the call from Maddie’s doctor tonight that the EEG she had yesterday was abnormal and showed seizure activity. So she has already had her first dose of seizure medication and we will hopefully get to see a neurologist next week to find out what all this means. We knew some of the chemo we have been giving her (to try to save her life) causes brain damage in somewhere between 5-20% of kids. We don’t know yet whether the damage we have done is permanent or if it will heal itself in time once we stop giving her the poisonous chemicals that caused it.
This has been the worst week since her diagnosis for me(Liz). She has had an average of 3-4 episodes per day and then has slept for hours after each one this week. She has had very little time where she has felt good each day and it is very hard to watch. With the fasting for anesthesia for the MRI, the night of sleep deprivation for the EEG, and the other sleep disturbances she has had this week because of sleeping off the seizures all day long, we are just plain exhausted here. So I wish my child was not having seizures, but I am relieved to know that medication may help and that we may be able to see a normal happy Maddie again sometime soon.
Brandon just arrived home for the weekend and they are playing happily at almost midnight right now. To see her play and be happy is well worth missing bedtime….
Please keep her in your prayers.
Love to everyone,
Liz, Brandon, and Maddie