Day 97 & 98 at St Jude

Day 97

Yesterday, Jesse received an albutriol treatment before starting the etopophos. For awhile afterwards she seemed to feel pretty good. Then the ifosphomide started, and it was downhill. But other than throwing up, we didn’t have extra issues.

Day 98

Today she feels like crap. And crap isn’t even a strong enough word for how she feels. Her red blood was at 7.8. After a transfusion, she did perk up. Now we are completing day 3 of antibody.

I’ll be honest I don’t feel like doing a post today. I am tired and suffering some burnout. And I am sure that Jesse is suffering the same burnout. I hate this place, and at the same time appreciate it. I wish we could do this treatment closer to home… as in we do it and go home to our bed and a second parent and sibling. I also hate cancer. And can’t understand, except to think there is corruption, why we don’t have an answer yet with the millions of dollars thrown at cancer research. Also why don’t we have a child size pole? Getting her in and out of the bathroom with this thing bites.

Today I had to deal with the nurse practitioner who can’t stand me. She brought Jesse some paint. I’m sure she asked… I was hoping she forgot. After she left Jesse ate some salad, and threw it up. We are trying pizza now. But maybe the fenegren will help that stay down.

The nurse from last night wrote her urine count in the throw up count. The attending nurse practitioner commented about the amount of throw up from last night. The day nurse was able to correct her because she realized what had happened.

Later on I went to patient services to see about mail. The manager behind the counter told me they had 32 voice mails this morning. She even told me that they are struggling to keep up. And said that if I stood down there too long, they’d put me to work. No problem. Might not like how I do it, but I’d try 🙂

Thank you Mom for the box with chips, pretzels, candy, and Doc McStuffins coloring book. Jesse enjoyed the chips and coloring. Thank you Jacklyn and CHKD for the cape, glasses, and Kind Bars. Thank you NC family for the card and present. Thank you Louise Marie for the present, stickers, and card. Thank you Brynn Paige for the card. Thank you Mt Pleasant Bible Study Group for the card. Thank you Shona, Shane, Mia, and Brain for the book and tracing kit. Jesse really enjoyed tracing.