Day 117 – 119 at St Jude

Day 117

We went over at 9am for labs to the Medicine Room. After waiting an hour, the results were back. Jesse’s ANC was still 100. Then we had to wait for the doctor to come see here. He was in interesting character. Then we returned to the Grizzlies House to wait for the next day.

Day 118

At 9am, Jesse and I were back at the Medicine Room. At 10:30am, the nurse stuck her head in the door and apologized for us having to wait so long. The doctor came in around 10:45. He was surprised that Jesse answered questions about her medical condition and participated in the discussion.

Afterwards, Jesse and I returned to the Grizzlies to wait for Monday.

Day 119

We headed over at 7:45am for labs. I asked them for a piece of paper, tape, and pen to write a “Do Not Disturb between 9 to 9:30” sign. Jesse asked to write the sign. It took some explaining to the clinic nurse to get her to understand that I just need 30 minutes uninterrupted to get my weekly marching orders from the boss.

She took Jesse labs, then left. I took Jesse out to the scale: 14.6kg. Yeah at least she is gaining some weight. Then I went to get her something to drink to take her medicines with.

At 8:45am, the nurse practitioner has to come in. Can’t wait till 9:30… She asked about the note, and from my tone I guess she figured out I am angry. And that tone deterred her from the baby talk crap. She wanted to send in the main oncologist at 8:55. I told her that I did not want to see anyone until after 9:30. And what good does it do to see him when her count information is not back? Past experiences have proven that to be a total waste of time.

This didn’t compute with her at all. I had to repeat myself again. I am so tired of people not listening to me. Sorry I don’t meet your exception of a human or whatever, but at least be courteous to me as I have tried to be to you.

At 9:30, the main oncologist came in. He acted a little hot under the collar that I deterred him from coming in at 9. He was short with me, but at least nice to Jesse. I pointed out Jesse’s swelling. Since he was looking at her lying down, he felt it was better. I told him about her complaining when she peed twice yesterday. However he didn’t really seem to care about that either.

He commented that tomorrow she’ll have an ultrasound. We have to come over for labs because Jesse’s ANC is 400 still. It was 400 yesterday and seems to be stuck there. Her white blood count did increase to .9 from .8 yesterday. And she is maintaining on the red blood at 8.1. Her platelets dropped fro 51 to 33.

I asked about when the plan for chemo would be. I need to know what the plan is so I can tell Mike, so he can make arrangements to get here. There is an email going around about his rescheduling, but no one can tell me anything yet. And as I called it, it was Monday before the doctor bothered to tell me. Is it crazy to feel really disrespected by this? Two seconds would be all it took on Friday for them to tell me: “Hey, we are pushing Jesse’s last round back a week.”

He then commented that we were done for the day. I told him no we have school. His words to me were “You can’t tie up the room waiting.” He then said he was going to call the school to see if we couldn’t get her teacher to come sooner. I told him at 10am she is teaching the kindergartens who aren’t in isolation.

He didn’t listen to me at all. He had the secretary call to harass the poor teacher. Then the clinician, who was trying to mean well, came and offered to get the teacher to come earlier. I gave up and just let her go off and call. I can’t get anyone around here to listen to me.

The secretary came in saying the teacher said I could run down and get Jesse’s school work. Jesse looked at me with the look of “please don’t.” I told the secretary we would wait for the teacher. Jesse thanked me after she left. Jesse really enjoys the teacher here. And I think the 3 hours she gets with her a week means a lot.

The teacher arrived at 11. She is super nice, and obviously seen this happen all the time. She figured that I didn’t really want to leave when I didn’t come get the school work.

Tomorrow we have to return to this blanked-blank hole for labs and an ultrasound. They have scheduled it for the afternoon. Wonder how long we’ll be sitting around waiting. But at least we are seeing an oncologist who in the past has treated us like we are humans.

This afternoon I took some time to check the calendar of when Jesse needed blood and platelets. Having to stay 2 days longer for the natural killer cells will actually put Jesse 24 hours from 0 ANC, if not at 0 ANC because she probably will not recover as high before we start Round 6.

And she seemed to need platelets every other day during this round. I am afraid at this point we might not be able to leave. That we’ll be trapped here another month while waiting for her ANC to recover and for scans to be completed. Another month will mean that we have to return to RMH. Another month of being treated like I should not have had children. Another month of being talked to in baby talk or a dog waiting for a treat voice pitch. Well at this point another 5 weeks 🙁 Then it will depend on how radiation is going to happen as to where we have to do that.