Radiation Getting Started Soon

It is hard to find the time to sit down and write updates, but I really want to keep you all updated. We didn't find out the results of the Tuesday bone scan until Thursday. It looks like her arm is the only spot right now and her bone marrow is clear too. We are sure thankful for that!

They had put a special IV in her arm on Tuesday called a Pic line. It was supposed to make it so she wouldn't have to get any more pokes. On Wednesday night I had to flush it with Heparin to keep it open, but it didn't work…it really hurt her. So, yesterday we had to go to the hospital early to see what was the problem. They took an x-ray and decided it wasn't in a good vein. That line will have to come out now. After discussing it with her doctor, I decided to let them put in a regular port. Before, she had central lines that were tubes that stuck out of her chest. This ''port" is something that is just under her skin and can be accessed easier than and IV can be started. I guess she'll still have to get a poke on occasion, but only once a week at the most. They will basically set up an IV hanging from that ''port" in her chest whenever they'll be using it. They will have us put numbing cream on it before they poke her so it shouldn't hurt and she should get used to it. The benefit is that when they don't need it, she won't have anything sticking out of her. It won't keep her from swimming or be a danger of infection and I won't have to change her dressing every day.

These have been long days at the hospital. On Tuesday I didn’t make it home until 7:00pm. After resolving the pic line problem, an appointment with her oncologist, and another appointment with a radiation oncologist at another hospital we finally made it home at about 5:00pm yesterday. While we waited in the afternoon for them to place another temporary IV in her hand, the child life specialist from the oncology ward came and talked with Kelby and I. She helped Kelby to not be afraid of the IV by using a puppet and letting Kelby “place the IV” for the puppet. They will be doing the same thing for us with the port as well. She seemed to respond well with that lady’s help although she was still upset when they put in the IV in her hand. She needed the IV so they could give her anesthesia today for the radiation simulation. I am going to keep that IV working over the weekend by flushing it every 8 hours with heparin so she doesn’t have to get any more pokes before they put in the port.

We got the simulation done today and were home before noon. Simulation is the first thing they do before starting treatment. They tattooed her to mark exactly where they need to radiate. It looks like we will be starting radiation next Wednesday. Treatment will be every weekday for about 3 weeks.

Hopefully we can have a fun weekend before things start getting crazy next Tuesday.