Once we left the first radiation treatment on January 4th we had to stop by the Hematology / Oncology clinic at Riley for our initial visit. We were taken into the clinic and Bri’s vitals and height / weight were checked. Every visit to clinic would start out this way because the chemotherapy medications are adjusted according to the height and weight. Once we completed that we were sent to an examining room where we were to wait for the doctor. Brianna was already not in a great mood after going through the first radiation treatment so we knew this was going to be fun.
We were not in the room for long and nurse Sally walked in and introduced herself. She asked and answered questions and then one of the nurses came in carrying a backpack. Bri’s was teal green and it said Bags of Fun on the outside. This was a very nice backpack and it was stuffed full. It was explained to us that each patient receiving chemotherapy received a backpack and that the program was started by a patient named Tatum. We would find out later that she was a schoolmate of my cousin’s daughter and Tatum started the program because she recalled how boring it was to come to clinic and get treatments. She felt that she could help the other patient’s appointments more enjoyable.
We opened Bri’s bag up, she was not real interested at the time, and were blown away by the contents. There were various coloring books and crayons, books, a DVD, American Girl magnetic dress up board, an Adidas shirt, and three pairs of soft socks. That was in one section. We opened up the middle section and found a game. In order to play this game you needed a handheld video game player and the next thing we pulled from the bag was a Nintendo DSI. There were other items in there as well but I am old and have a hard time remembering what else was there.
The visit was mostly to set up the chemotherapy regimen that we would be following. During radiation over the next six weeks we would be using an oral chemo drug called Temodar. These capsules were large so they would have to be taken apart and the powder put into pudding or juice to give to Bri. She was also prescribed what seemed like a ton of other drugs as well. She had antibiotics that were only used on the weekend, some used all week, a drug that was basically pepcid to coat her stomach prior to the worst drug of them all the dreaded steroid. Angie refers to the Dechadron as rattlesnake juice to this day. The steroids started out at 4 times a day, which required us to wake Bri up in the middle of the night which was a real pain. The Temodar was to be given only evenings and would be administered seven days a week.
So, the plan was this. In the mornings Bri had to take various meds and then she had to go to radiation at the IU Simon Cancer Center. She would then get additional meds in the afternoon. At dinner time she would get different meds that included her chemo drug, and then would have to be awakened about midnight for more steroids which she got at every med time. What a life for a beautiful little 7 year old girl that up to now was an active person. We left Riley more overwhelmed than ever.
Now that we knew the treatment plan I had to figure out how I was going to be able to participate in Bri’s treatments as much as possible. I talked to my boss and explained the treatment plan to him and made a proposal. I asked if I could be allowed to take Angie and Bri to the radiation treatments in the mornings, drop them off at the house, and then come into work for four hours. At the end of the day I would go home and log into our system from there and work additional time from home in the evenings. We have all heard of nightmares where parents employers will not work with them in these situations and I was extremely surprised when my boss told me that I needed to let him know what my work / home balance needed to be and he would make it happen. What a huge relief that was to me and Angie. I would be able to be with them through this journey and still work. God really worked this situation out.