Ethan’s Initial Hospital Stay

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Trick or treating in the hospital

Ethan (& Steve and I) spent 11 nights in the hospital. They were hard. He had many blood transfusions and multiple platelett infusions. On Thursday 10/30 he had a spinal tap/lumbar puncture, bone marrow biopsy, and his first dose of intrathecal chemo (chemo to protect disease in the central nervous system). Ethan’s port was also placed in his chest (under the skin), which will remain there for the duration of his 3 1/2 years of treatment. The biopsy confirmed a diagnosis of B-Cell Acute Lymphoblastic Leukemia (ALL). In the afternoon of 10/30, we had a family meeting with the oncology team, where we were informed about the 3 1/2 year treatment (chemo, steroids, etc) roadmap ahead of us and some of what to expect. It was overwhelming to say the least.

During this stay, Ethan started his chemo infusions and steroids. Side effects seemed to kick in quickly, and he had some difficult days of headaches, throwing up, unwillingness to eat, and lack of sleep. On the following Friday 11/7, Ethan had another spinal tap (Day 8 bone marrow biopsy), and the next day (11/8), we were finally discharged. Ethan was excited to leave, and Maddy and Caleb were eager for us all to be home. I was admittedly sorta scared to be leaving — it felt like we were coming home weighted down with so much in terms of diagnosis, meds, home care, and signs to watch out for that would require a trip to the ER.

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Celebrating Maddy’s 9th birthday in the hospital

 

Although it was overall a difficult initial stay at the hospital, there were some good moments, including trick-or-treating through the CHOC hallways (actually the tremendous number of booths was quite impressive), celebrating Maddy’s birthday with Roma d’Italia take-in, being a guest on the CHOC radio station at Seacrest Studios, and all the wonderful visits and gifts from family, friends, and Ethan’s teachers at Arroyo. These things yielded some smiles that were otherwise hard to come by.

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