I wish I could say we now know exactly what is going on and have a plan for how to treat it, but that is not the case.
After meeting with the neurologist Thursday, given that Maddie had been on seizure meds for almost a week and seemed to be having more episodes than before taking the medication, it was suggested that if they continued to last over 20 minutes per episode that we go inpatient and do a 24 hour videotaped EEG to see what is really going on. So after her first “seizure” following our appointment Thursday, we had to head into the hospital as it lasted 30 minutes. After truly torturing my baby to attach electrodes all over her head with airplane glue, we began the long period of observation. She had many episodes while hooked up so we felt sure they would be able to clearly see the seizures this time and identify their type.
At 9 am yesterday morning, they completely shocked us by informing us that her brain activity, while highly abnormal and disorganized, did not show evidence of seizure activity. At that point, they asked us to make her begin fasting so that she could have lumbar puncture procedure later in the day to check for viral or bacterial infections on the brain or in her spinal fluid, and to rule out Central Nervous System leukemia relapse. Of course we were scared considerably by the possibility of relapse, but what turns out to be more frightening is that our doctors wanted to rule those things out but did not in fact suspect those things as much as they suspect some type of brain damage from the chemotherapy that is causing her brain to function improperly. While having seizures was not something that thrilled us, at least seizures were treatable, and it is unclear if another type of damage done to the brain can be reversed or treated in any way.
So at 7 pm last night Maddie had a lumbar puncture with a bone marrow aspirate (just to make sure she is not relapsing there either). We do not know the results of all of the tests they are running, but we have found out that her cerebral spinal fluid was clear, which would indicate that she is not relapsing there and that there is not a raging infection there either. While that is comforting, it gets us one step closer to where they may tell us that they have no idea why Maddie’s brain isn’t functioning correctly and that she may have some type of severe brain damage. If that is the case, there is nothing we can do except wait and watch and hope that it repairs itself and stops deteriorating.
While relapse has always been our greatest fear because very few kids with Maddie’s type of leukemia survive relapse, we now have a very real new fear that she may have a very rare, but possibly irreversible side effect of her chemotherapy. When her oncologist said that he would rather see a relapse than a certain type of brain damage, we knew it must be very serious. And to clarify, the damage that they would be most afraid of is not necessarily something we can test for. By excluding all of the other possible reasons for her brain malfunctiong, they will conclude that it must be that, and then wait to see if she is able to heal herself or not.
Please pray for our Maddie.
Love to everyone,
Liz, Brandon, and Maddie