Sean Bailey

In August of 2021 Arya got sick with what I thought was a virus. She had been similarly sick the prior year and the pediatrician, without doing any tests, told me it was just a virus and there was nothing to do about it. This time when she did not get better I took her for a covid test. I had already made her an appointment with the pediatrician the day her results came back negative. She got rapidly worse that day and rather than wait for her appointment that afternoon I took her to the emergency room at Shawn Jenkins. She was rushed into a trauma bay where she had an undetectable hemoglobin. She was given blood and platelets. She was still going downhill and they intubated her and transferred her to the PICU. Although no one ever discussed it with me, while in the waiting room I heard that the patient that had just come up from the ER was coding, and read it mentioned once in her notes. She was placed on an oscillator. They did the first of many lumbar punctures and a bone marrow biopsy. The next day the results confirmed the diagnosis of B-cell ALL.

We stayed in the hospital for 3 months during which Arya had to have 2 surgeries on her arm for a fungal infection, have 2 central lines and port placements, g tube placement. She had bleeds in her eyes requiring monitoring. I was pregnant when she went in and at 21 weeks and 3 days I went downstairs to labor and delivery with bleeding to be told my baby had no heartbeat. I took the first of the medications to induce and went back to Arya’s room to wait for her to go to bed before returning downstairs to continue the induction. I delivered her stillborn sister the next morning and went back to Arya’s room. She was discharged and we went home two days later to start what felt like a completely different life. She was on continuous IV fluids and tube feeding, with intermittent IV medications.

I had to quit my job as a nurse to care for her. Her older siblings had to stay in other places to protect her and due to our many hospital stays. I lost my financial independence. My children lost time with each other and with me. Arya took over a year to get to maintenance with all of the setbacks. I think we are all still trying to navigate our new “normal.” They still don’t really understand why we cannot do all the things we used to be able to do. I appreciate you so much for giving my children a wonderful Christmas.

Video Games and Playing Outside

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