What I Learned That First Week

Review of caregiver tips for that first week.

In addition to being there for and with Mathew and keeping up with the tests and parade of doctors I accomplished much by having nurses check for new orders, keeping in contact with the case manager and floor nurse, and pushing, making sure nothing stalled in the process, or was put on the back burner. As a result, I feel that the medical personnel involved also felt my urgency, responded to it and were actively involved at all times to get Mathew to Moffitt. In retrospect looking at all of the lab work that was done in that short week, they covered a lot of ground in eliminating possible cancers.

Thankfully our primary doctor realized Mathew could not be treated locally. In just a few days Dr. S said, “He has deteriorated too much.”

For example, his bilirubin went from 5.0 on the 22nd (normal is from below 1 to 2) to 7.5 on the 28th.

At one point the doctor talked about sending Mathew home until Moffitt contacted us. I was terrified of trying to manage his pain and care at home. My niece told me I didn’t have to accept his discharge.

 “Don’t let them send him home, Tia.” she texted me.

Another thing my niece told me is this (and remember she is an oncologist.) My Mom is a 12-year breast cancer survivor and she came in and with all her heart told my son to look at her and that she was a survivor. My niece simply said, "Not the same." This is something we would find out.

Mathew’s room was usually kept in low light and he slept whenever possible. His hospital bed was extra wide and Mathew liked it when I sat on the bed with him. He was always reclined because he couldn’t stand to lie flat, so we sat side by side, he listened to his music and when it was quiet and he was asleep I would listen to the sound of the IV  as it ran up and down a clickity scale. I imagined a little man running up, and then running down.