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Day 125

Updated: Jun 26, 2019

As a medical professional, my mother wanted to learn more about the brain tumor. I imagine she was worried about other members of our family having the same condition. I promised I’d request the medical documents.

I hadn’t requested Constance’s medical files for fear they would say I am a terrible mother and it was my fault my daughter had a brain tumor. Intellectual rationality is irrelevant in the face of devastating grief.

After a week of stalling, I submitted the appropriate form. After receiving no response, after a week, I sent a follow-up email. A day later, I decided I should be brave for Constance and pick up the records in person. I owed it to her to face the music.

On the way to the hospital, the traffic stopped for two lights for a funeral procession. It was on the same road where cars had refused to move out of the way for Constance’s ambulance. I tried to keep calm. I thought to myself, “I am stone on the beach. I have nothing to lose or gain. The water flows over me. I am still.” The procession concluded and I drove into the hospital parking lot.

The last time I was at the hospital, Constance was there. The last time I was there, Constance was alive. Now I was there and Constance wasn’t. It doesn’t seem fair. I am old and she was young; how unnatural.

Dressed as my closest impersonation of a pharmaceutical representative, I went to the hospital’s administrative offices. I waited politely outside the office of the records release person until she ended her phone call and invited me in. After some self-deprecating small talk on my part and chatter about the worst people she’d dealt with on her part, I signed a release and left with 400 pages of records on Constance’s most recent visit to the hospital—the day she passed.

I read through every page in reverse order, thinking I would save time starting at the end. On page 292, there was a note about calling Gift of Hope. It said Constance’s condition excluded her from being a candidate for organ donation but she might be eligible for eye bank donation. The nurse had been instructed to call the eye bank when the “patient expired.” I was the one who brought up organ donation. When the doctor told me our options were to unplug Constance’s ventilator now or wait for the hospital to do it in a dozen hours, my question had been whether our decision would impact Constance being an organ donor. The doctor didn’t know but had said she’d find out. Later, when my mother asked again, they had told us Constance couldn’t be an organ donor. When I saw the note in Constance’s medical records, I called Gift of Hope and spoke to the person noted in the medical record. She told me they’d advised the hospital to call our local eye bank, Eversight Eye Bank, and that if they’d taken a donation from Constance, both of Constance’s parents would have had to approve it in writing first. As we were never asked, I presume Constance had been ruled out of eye donation as well. Even Constance’s eyes had been too sick.

The informative pages were 109-110. They contained detailed notes from the pediatric neurologist. Medical terminology necessitated that I google nearly every sentence at least once. It took all day to understand what had happened.

I would have called my mother to decode it but she’d texted and said she was going to bed early owing to a late-night shift at her hospital.

To summarize, they had removed part of Constance’s skull. They discovered a large tumor. They attempted to remove it. They found three veins with cloths. They had removed those. They had tried to stop the bleeding. They had also noticed more of the tumor and had tried to remove that. There was more bleeding. They had tried to stop that. They had removed a part of a lobe of the brain to try to stop the bleeding. The bleeding continued. Then they had stopped trying things. They didn’t replace the part of the skull they had removed. They had just waited for the flow of blood to slow and closed the flap of skin.

As I read the medical records, Constance’s father was on a rowing trip. I texted his work and personal phones to ask him to call me when he was alone and free. I noticed the last time I’d texted both of his phones was a request for him to come to the hospital for Constance. The day Constance passed, I’d left messages but hadn’t heard back. Phone reception in the hospital was terrible so I had tried text messages just in case. That morning, the text had said, “Please come to Lutherans Children Hospital.”

From Connecticut, Constance’s father called me. I asked if he wanted Constance’s medical records now or later. He said now. I sent him copies of the doctor’s notes and listened on mute while he read it. I’d spent the day crying and exclaiming expletives. As he read, he cried and plead for mercy.

When his reading concluded, he said, “There was nothing we could do. The only thing I would have changed if we’d known was not going to work that day so I could have been with her longer.”

We got off the phone. I ate all of the food in Chicago.

If I was looking for guilt or absolution in the medical records, I didn’t find it. I just found my unfortunate baby girl with a giant malignant tumor. Poor Constance.


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4 comentários

Membro desconhecido
10 de out. de 2018

I had missed a few blog posts in between somehow. This was one of them and left me in tears when I finally read it today. You are a strong woman, Rachelle. Thank you for sharing this. Thinking of you and Constance ❤


Membro desconhecido
19 de jul. de 2018

Emmy, Thank you for reading it and remembering Constance. That day was a particularly hard one for me. I cry everyday but that day that was all I could do. I was pretty useless the day after as well. Come to think of it, I don't know that I have been the same. Grief seems to be a process of devolving.


Membro desconhecido
18 de jul. de 2018

Oh Rachelle, your post made me cry. I think about you and Constance daily.


Membro desconhecido
18 de jul. de 2018

Day 126 is at

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