Round 1 “Day +6”

Hello from St. Jude’s!!

Today is a day to talk about and celebrate. Why? Today was a day of many small little victories. Catie woke up to the smell of french toast. She ate very little of it but she ate before 9am. In order for Catie to receive the 1400 calories she needs each day she needs to eat about 100 calories each hour that she is awake. Are you tired of reading about food? Imagine for a minute that this food was being offered to you – constantly – by a persistent and yet smiling mother? It is food all day everyday for Catie and she is not hungry or a “meal” is nothing that you have ever eaten.

Today Catie’s schedule went like this:

Woke up at 8:15. Took medicine. Ate 4 bites of french toast and drank a glass of apple juice. Took more medicine and her vitamins. 15 minute bath. Mouth care and breathing exercises. Got dressed. (Did you catch that in order to save time in the morning mouth care and the breathing exercises are done in the tub? So much for a relaxing morning bath.) Ate a banana. Grabbed her lunch box and ran down 4 flights of stairs. (Running the stairs is Catie’s idea; it helps with her growing pains in her legs. Due to all her medication she cannot take anything to ease her growing pains. So she feels that running the stairs helps.)

In the car at 9:36 and drove to the hospital. 9:45 arrived at hospital and checked in. Catie’s first appointment was at 9:45. They were running 40 minutes behind in the Assessment Triage unit. (This will throw off all other appointments today.) While we wait Catie wrote her spelling words in ABC order three times.

At 10:30 we were seen at assessment triage. The appointment took 15 minutes. Catie’s labs were drawn, vitals are taken and we are set to leave. Catie’s weight was down. We now have an hour and 15 minute wait. The blood that is drawn is needed before our next appointment. We go upstairs to the Family Porch and Catie does her Reading homework. Catie ate a Starburst candy and a piece of cheese and drank water while she does her work.

At 11:00 we proceed to B Clinic (our new clinic for Bone Marrow Transplant) to wait. They need the lab results and they are running behind. 11:00 was our actual appointment time but we have to wait until the blood lab results are back to be seen. Catie ate some more Starburst and cuddled with Aunt Lynn while I read her Ballet Shoes. We were called back to our clinic at 12:15. Catie was her old self. She was happy and chatty. She was doing back roll-ups on the bed. She was full of energy. God Bless sugar and eating early. We met with the head of the clinic and got Catie’s lab results. Her white cell count was and is at 0. Her other counts were good and she needs no transfusions. This will be checked again tomorrow.

At 12:50 we headed to the Medicine Room for Catie’s shot of GCsF and another “push” of chemo. We checked in and after 30 minutes I checked again. Catie read while we waited. Catie was very calm and patient. She drank some chocolate milk. When we had waited an hour I went and checked again – I was informed that they cannot order her medicine in the Medicine Room without her chart and that they are waiting for her chart. I walked back to B Clinic and asked where her chart was. Each time I asked someone what was happening I felt as though Catie’s chart was moved to the bottom of the pile.

Finally we were seen. Catie was given her chemo and her shot of GCsF and we left. We walk over to the Pavilion to show Aunt Lynn the amazing stories behind St. Jude’s. While we waited for Lynn; Catie ate crackers and drank water.

We returned home after 3. Catie’s schedule had us home at 1. Catie was tired and I was frustrated. She had mouth care to do 2X to catch up. (This is not the big deal that it once was as now Catie swished her salt water rinse without issue. She now sucks on her second part of mouth care, a mint tablet, for ten minutes and then is able to swallow it with water. She is amazing. Less than one week ago mouth care had Catie in tears and throwing up because she was so upset. Now it is something that needs to be done and it is.) She needed medicine. I looked at Catie’s list of calories and at that point in the day Catie had already eaten 730 calories just nibbling all day. Catie finished her school work for the day. Catie read letters from her class as I prepared dinner. To celebrate this great day Catie ate chicken tenders, hash browns, green beans, cucumbers and apples all off of little curly toothpicks to make it special with Sprite on the couch with a TV tray watching Chitty Chitty Bang Bang. She ate all of this within the one hour timeframe that food is allowed to be eaten before it has to be thrown out as it might then contain bacteria that could make Catie very sick.

By 6:30 Catie was ready for her bath. Catie went into the tub with her mouth care and breathing exercises. She put on her pj’s and asked if she could play with her new toy. Sure; today was a great day. Catie ended the day eating 1103 calories. (Yesterday’s total was 500.) We set up her cat and mouse track and she played with it while she drank more apple juice. Then she asked if she could watch TV. I told her she could watch Dancing with the Stars if she would eat something. Catie sat eating without being told, offered, or prompted. She ate 9 1″ sugar cookies. Catie ended the day after eating 1403 calories!!!

So to sum up the day, Catie ate 1400+calories, Catie successfully received chemo with no reaction, Catie can now successfully swallow pills. Catie was as happy and herself as she has been on a consistent basis since we returned on 9/29. Praise the Lord!!

God Bless and sweet dreams,

Christine and Catie at St. Jude’s, Kevin in California, Mom-Mom and Da with Maggie, Max, Mia, Molly and M.E. in Mechanicsburg

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