We went home on Saturday morning. Almost as soon as Phoebe arrived home and got settled on the couch, she asked her Daddy to make her Shephards pie. She ate, for the first time in a month and she was happy. Sunday brought more of the same. We were still at the hospital for blood work and medicines on both days, but when Phoebe was at home, she shined. On Sunday, she requested tacos and insisted on making her own. She refused to use her fingers to make things easier. This was suggested because she is weak from being in a hospital bed for a month, but no, "I will use a fork and do it myself", she said. She didn't eat a lot, but she tried and she was happy. There was Phoebe - and more than a glimpse, she was bright and shining and very much herself at home.
We were all happy. Mae was glowing and making plans for evening walks and more dinners.
This morning we arrived at the hospital for early appointments. The second (literally) we walked in the door, Phoebe began to shake. It was subtle and while it was happening, she spoke to us. It stopped, but an hour later it started again. Phoebe's body began to shake and tremble and as it did, she still spoke to us and was aware. In fact, she ate her breakfast while all of this was happening and even sent me to Starbucks to get "the milk that I like". She also told us that she couldn't stop the shaking. The neurologist came in and because Phoebe was so alert, he said he was "98% sure it isn't a seizure". He ordered an EEG just in case.
The EEG showed seizure activity. Lots of it. Phoebe continued to shake for over an hour and even when she stopped shaking the EEG still picked up the same seizure activity.
We are now in the ICU and Phoebe will be connected to the EEG for the next 24 hours. She has been restarted on anti-seizure medication and is being monitored and watched closely. She is stable and calm and we hope she has stopped having seizures. We don't know how long we will be here and we don't know what all of this means.
Leukemia is a monster and it can hide in the central nervous system. Because of this, chemotherapy is injected into the CNS to treat or prevent disease. Phoebe had a lumbar puncture with methotrexate chemo on Friday. Methotrexate is known to cause neuro-toxicity and seizures and a drug level that was drawn today shows the drug is still in Phoebe's system. This could be the cause of all of this or the cause could be the inflammation in Phoebe's brain. It could be both. Regardless, I hate this drug so much. In fact, lately I feel like screaming about most of the drugs that Phoebe receives. The anti-seizure medicine that can cause severe depression. The chemotherapy drugs that cause stroke, heart disease, secondary cancers, seizures and on and on it goes. Is it too much to ask for medicines that we give to children to be developed with children in mind and safe? Is it crazy to think that these medicines should heal instead of set these kids up for a life time of secondary disease and side effects?
We are seeing the effects of these medicines every day and we are taking things one day at a time. We are holding on to the sweet memories of the two days we spent at home with the hope that we will be there again soon. We will. We have to believe we will or we might just break down.
Some good news and always a reason to hope. Phoebe's bone marrow MRD results are in and the level of leukemia is lower than on previous tests. Despite not being on treatment for five weeks, Phoebe is holding her own and "maintaining" a very low level of disease.
We love you Phoebe Rose.
Here is Phoebe and her beautiful smile at home.