St. Jude – Monday with Tim and Julie

I probably should have had Dad change his Facebook updates to “public”.  But I left it alone and didn’t think much about it.  I know that Summer appreciated the break from me and Angela hovering over her!

St. Jude Update for Monday and Tuesday.

Summer had a light schedule for Monday. First appointment was Physical Therapy at 10:30. She was still pretty weak from being so sick last week and still on continuous antibiotic feed through her port, so was hoping she wouldn’t have to do anything physically hard. When she came out, she said her legs were like jello from not really using them for so long. She said she did ok. We headed back to Target House so she could work on her project for school that was due at 5:00.

Her next appointment was for an EMG at 1:00. This was at a different medical building in a different part of Memphis. When we arrived she checked herself in using a kiosk! I guess the world keeps changing, but this is the first for me to see. They put electrodes on different parts of her face to test the nerves to see which ones are still responding, and which ones are still paralyzed from the surgery she had. I asked her if it went ok when she and Julie came out. She said “I guess not horrible for them sticking long needles into my face in a lot of places to see if I could feel them.” I was glad I had waited while Julie went in with her! Her results are being sent to her neurologist who will evaluate them and meet with her later.

We stopped at a Kroger’s on the way back to Target House to pick up a few things. Summer didn’t want to be dropped off at the door. She said she wanted to walk from the lot so she can use her legs more. She was pretty wobbly, and after about 15 steps she said “OK Gramps, I need you to be my walking stick. I don’t want you to hold onto me, just let me hang on to your arm so I don’t fall.” I’m happy she pushes herself, but wonder if some things are just too much right now. When we got inside, she used the cart to steady herself. She did great, but was really worn out by the time we got back out to the car. When we got back to Target House, she got right back to her school assignment and got it transmitted at 4:45. It was a busy day for her.

Tuesday started with labs at 7:00 at the St. Jude campus. Summer was not happy about it being so early, but was up and ready at 6:30. After her blood was drawn, her next appointment was at 10:15. They were to follow up with her from last week, and if everything looked good, give her another chemo treatment. We had time to kill, so the three of us sat in the waiting room and read. The time seems to go so slowly. There are lots of people coming and going around you, so that helps. The hard part is that many of them are very sick little kids. A lot of them look very fragile. Their parents are so young and have strained looks of concern on their faces. Many are trying to keep a younger sibling happy as they maneuver strollers, diaper bags, and toys through the clinic. You can hear children screaming and crying behind the doors of the patient rooms. It’s hard to witness it all. Then, a Dad comes around the corner pulling a little red wagon with his little girl in it. She’s sitting up with a great big smile on her face. As she comes by me, she raises her hand up and waves to me like a little princess and said hi to me. What a happy soul! St. Jude can be a wonderful place for these kids as well. Just have to keep your head in the right place.

Summer finally got called in. When she came out, she told us there was a change in plans. Her red blood count was really low, so chemo is being pushed back. Instead, she needed to get another blood transfusion. This meant moving to a different area and waiting again until they could get her in. Summer was getting stressed. She had to take a quiz for one of her classes before noon. She also had a virtual class at 2:30 that she didn’t want to miss. She tried to do the quiz on her phone, but it wouldn’t work. Julie told her we would go back to Target House and get her lap top to do the quiz, and be right back. Summer was thankful and relieved. Right after she completed the quiz, they called her in for the transfusion. They told her that she needed two bags of blood. This meant a longer time being hooked up, and was now overlapping her class time. She did the class anyway. The nurses moved in and out quietly while Summer was in class. At the end of the transfusions, they had to remove her port and replace it with a new one. At one point, three nurses were in the room working on her and around her while she was interacting with her class. This girl can multitask like nobody else!!!

This completed her Tuesday at St. Jude. She was tired, but in great spirits. We had a quiet evening watching a movie. Wednesday will have a slower pace..