Author Archives: admin

They have put new furniture in the patient rooms for parents. The old blue chair would recline so that I could sleep next to Jesse holding her hand. But the new chair… it only goes half way. For several hours I tried to sleep, but at 5:45am I woke up with both legs and an […]

Day 93 Jesse was scheduled for school at 8am. That went really well waking her up. And by 8:30am, she was over doing school work. She did manage to hang in till 8:50am. Then we returned to the Grizzlies to wait for her 1:30pm MIBG Injection. While Jesse was in school, I went to Patient […]

Today Jesse was schedule for a CAT scan. The doctor had moved this up to take her scans before the surgery conference tomorrow. I am really tempted to borrow a lab coat and a wig to be at the conference. I don’t want to hear any of the other kids. I just want to hear […]

Day 88 In the morning, Jesse had clinic at CHKD. I only saw her for ten minutes after we went in the clinic. She was busy visiting everyone in the clinic. Her oncologist told us it was E. coli in her urine. That was a big surprise. I was thinking it was the klebsilla again. […]

Day 86 Today Jesse had an awesome day. She got to visit her class at Norge. They were so excited to see her. And she was beyond excited to see them… in fact she woke up at 6am because of the excitement. She woke up right when I was hooking the meropenem ball to her […]

So I am feeling a little frustrated. Hospitals are the equivalent of prisons. It takes forever to get you out the door and into the world where you can really rest and relax. Plus we are only here for 10 days, Jesse and I need all the time we can get at home safely. On […]

Day 82 Jesse and I were so excited that we both woke up at 5am on Friday morning. Before we could leave, we had to go over to St Jude to have labs drawn. And I needed to get the tickets. Jesse was begging to head to the airport even before we left for her […]

Day 80 Yesterday went much smoother. Jesse had a school appointment, social worker appointment, and dental visit. She never left the isolation area of the hospital. At 4:30pm, I gave her the shot of il-2 and GM-CSF. And at 9, her temperature reached 100.2. I did freak a tad, but took it an hour later. […]

Totally over this place. I know they do wonderful things in saving people’s lives… but I am still over it. I am tired of not being heard. I am tired of it being assumed I am divorced and not working. I am tired of the internet that fails to work. I know they do a […]

Mike arrived around 7pm last night. He mentioned the plane ride from Charlotte to Memphis was like riding a roller coaster. Jesse was so excited to see him. He arrived at a good time. It was pouring freezing rain, mixed with lightening and thunder, and wind. This morning, Mike was due at St Jude at […]