August 19 - September 8 (Inpatient 21 days): Brain mass diagnosis; 8/23 Craniotomy and tumor resection; two weeks in recovery
September 8 - October 4: At home managing Diabetes Insipidus, physical and mental disabilities, and an array of medications; preparing for chemotherapy; and making arrangements to live in Boston and to apply for Medicaid benefits for Zoe.
October 5 - October 15 (Inpatient 11 days): Chemotherapy Cycle I meant a four day continuous infusion in the Intensive Care Unit to carefully monitor Zoe's electrolytes, urine output, and reactions.
October 15th: Arrived home at 4pm. Zoe's state of health declined quite rapidly. She did not show signs of nausea or fever, but rather her eyes looked fearful and sick and she became resistant to taking oral medications, drinking, or even speaking. Thirty hours after we had been discharged from Children's Hospital, we we being readmitted with a fever of 102, neutropenia (Absolute Neutrophil Count of 0.6), and severe mucositis which involved another stay in the ICU.
October 16 - November 4 (Inpatient 20 days): This stay epitomized every fear I had about the pain, terror, and trauma that Zoe might experience in treatment. She had a hoarse, terrified voice, and a look in her eyes that is indescribable. We discovered she had a severe itch reaction to opioids and was still miserable with the continuous infusion of anti-itch medications Narcan and Nubane. She was unable to sleep for days due to her pain and the inability of the doctors to prescribe a concoction of medications that would effectively treat her pain, fear, or itchiness.
While remaining inpatient, Zoe recovered from mucositis and went through the battery of tests to see if her body could tolerate Chemotherapy Cycle II. These tests included a GFR kidney function test, a barium CT of her gastrointestinal tract as she had been having many problems including bleeding and an ulcer, and a Cerebral Spinal Fluid test to check for the presence of cancer cells. Her blood and electrolytes were tested frequently.
Chemo Cycle II coincided with our appointments at Mass General Hospital to plan for Proton Beam Radiation Therapy, so Zoe was transported between hospitals between infusions. She was discharged from Children's Hospital November 4th at noon.
November 4 - 21 (Inpatient 17 days): Less than 24 hours after being discharged, we were admitted being febrile and neutropenic and endured an even worse mucositis torture in the ICU. Again Zoe's pain could not be captured; watching her was unbearable. Four maddening days in, we found some relief in the combination of Zoe's blood counts increasing and healing her, methadone rather than morphine, and Valium for her anxiety.
November 16: Zoe began daily radiation therapy which would last until December 30th.
November 18: Zoe had a gastronomy tube placed so she could take medications, supplements, hydration, and nutrition through her stomach in case she suffered from mucositis again or was too lethargic to eat and drink, such as from the side effects of radiation. If we had it to do over again, I would have asked to see all the different models of G-tubes available and ask why the doctors recommended the model they wanted to give her.
November 23: We were able to meet with Dr. Robin Jones, a neurologist at MGH who, after viewing the MRI images of Zoe's tumor a resection said under her breath, "My God, look at the size of that tumor!" After walking and talking with Zoe, she declared that Zoe has an impressive array of abilities for someone who underwent the terribly invasive resection that she did, and that she is essentially on par with her peers cognitively.
November 21: We were discharged at 8pm from Children's Hospital Boston and were able to sleep under the same roof outside of a hospital for the first time since October 5th. We continued daily radiation treatments but for a few days of for Thanksgiving break.
November 28 - November 30 (Inpatient 3 days): We had our third cycle of chemotherapy at Mass General Hospital for Children, a pediatric hospital within the world famous general hospital. Because this cycle and Cycle IV coincided with radiation therapy, specific drugs were removed from the protocol because the side effects would be exacerbated by the radiation. This made a world of difference to Zoe. Her brain was able to regulate her electrolytes fairly well and, with Decadron, Benedryl, and Zofran as anti-emetics, Zoe did not have any nausea!
November 30 - December 10: We attended daily radiation therapy treatments and needed a transfusion of blood products on December 8th.
December 11 - 15 (Inpatient 5 days): Admitted febrile and neutropenic. When Zoe is under these conditions, she is not allowed to leave her hospital room, even to walk down the hallway, so she is essentially bedridden.
December 20-22 (Inpatient 3 days): Chemo Cycle IV
December 29 - January 4 (Inpatient 6 days): Admitted with neutropenia and fever.
December 30: Last proton radiation therapy treatment.
January 4 and 6: Neuropsychological testing
January 10: Potentially begin Chemotherapy Cycle V
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