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 were 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. 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. She had to have a lobe of her lung removed and a chest tube placed. She spent portions of that time between the oncology and the PICU.

I was pregnant when we first went to the hospital 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 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 got pregnant again with another daughter.
In May Arya’s biological father passed away from lung cancer that had metastasized. He had been estranged from us and all of his immediate family. We reconnected with his side of the family and now update them on Arya’s care.

In November of last year her baby sister Heather was born. Shortly after I realized that my relationship with Heather’s father, the only father Arya has ever really known, was becoming dangerous for everyone and not just myself anymore. We ended up leaving in January. Unfortunately we had become dependent on him in many ways and are still trying to recover and plan for the future.

Arya is nearing the end of treatment now. She is still on nightly tube feedings. She has started therapy and is still being followed by ophthalmology. It still amazes me and everyone that was there in the beginning of her treatment that she is doing so well now.

playing video games, tv, playing outside

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