Monday we went to the see the doctor who is giving Grace the radiation. They explained what will happen during the radiation treatments. She will lay down with her hands behind her head, as the machine rotates around her abdomen. Treatment will be for 7 days not 5 like we originally thought. There will be 3 rounds of radiation. Monday through Friday and Then back again Monday and Tuesday. The doctor explained the radiation will cause her to become nauseous. He also told us that after a few days of treatment her belly will be sore like a bad sunburn.
Wednesday, Grace had her second chemo infusion. It’s about an hour drive there. We left the house at 11:45, and didn’t return home until a little after 5. The longest part was waiting for the labs. Once the labs came back good, they ordered the chemo, and it only took about 10 minutes.
Before we left our home, I put lidocaine on the port, and covered it with press and seal. When they went to put the needle into the port ( I know there is a technical term but I just can’t remember it) she really didn’t feel it, she never even said ouch… she said she can feel the fluid going in but the needle didn’t hurt. She did really well.She seriously she played chess while the chemo dripped. I was worried about her becoming nauseous before we got home but she didn’t. She came home, ate dinner and had dessert. We tried to stay ahead of the nausea. Last time about 5 hours after the chemo treatment she started throwing up. So we gave her some zofran right at 5 hours. She was able to sleep through the night but asked for zofran as soon as she woke up. She is still feeling nauseous, and asks for zofran about once a day. She is tired and has been complaining of a headache.
On Thursday, we went back to the Cancer center to have a CT done to radiation mapping. They said they wanted to start on Monday, but needed the doctor to create a plan of attack first. I haven’t heard anything yet about, what time or day radiation will begin.
Friday, we went to the pediatrician for a follow up from the surgery. Her incision looks good, the steri strips have not fallen off yet. The incision from the bulb drain is healing well. She has not lost anymore weight. I have been giving her protein shakes, with added ovaltine, peanut butter and bananas. When she left the doctors the battery in the van died. We had to go buy another battery. The girls stayed busy drawing and coloring while they waited for Joey to pick them up. However, he really didn’t need to come get them, the Chrysler service department had us in and out in about 40 minutes.
I have found that adding a timer to my phone helps me keep track with her medicine, and mouth care. She needs to use mouthwash (biotene) 15 minutes before brushing her teeth because two of the medicines she is taking cause mouth sores. She needs to brush her teeth three times day. They also suggest that she apply chap stick about 5 times a day to prevent dry cracked lips. So far, no sores!
I have also added reminders to eat. I am totally a stress eater however, more than once since this disease has taken over our lives, I will find my lunch in the microwave at dinner time. I know I need to stay healthy so I can take care of Grace. I also found that packing a cooler with healthy snack and/or protein shakes is a better alternative to grabbing McDonalds when we leave doctor appointments. I have noticed because we are on the road so much we grab fast food and I feel so run down. So healthy snacks are a must and better for her too.
I have also packed a nausea bag for the car. It contains blue puke bags (So you can just tie it off and throw it away.), wet wipes, and queasy drop candy. If there is anything else anyone can think of that might need to go in this bag, please let me know. We haven’t had to use it yet, but I want to make sure we are prepared when the time comes.
We spent the rest of the day Friday (today)decorating Thank you cards. All the girls chipped in. Crafting is a fun easy activity while Grace is still recovering from surgery. I love all their little personal touches.
I’ve had insomnia since 1999…. It actually went away from a few months last year… but now it’s back. I’m afraid to take the the doctor prescribed sleep aid because what if I don’t wake up when she needs me? What if I don’t hear her throwing up?
Again, I am so very thankful for my friends, family, and everyone praying for my girl. I am so amazed at all the kind gestures and support. Thank you from the bottom of my heart.
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