This morning Summer was not feeling good, she said her stomach was upset. I tried to get her a taco, but she did not eat breakfast. That is ironic after my post yesterday. Some of the Chemo side-effects are starting to kick in. Very slowly, but they are coming.
We made it through our 7 appointments today. Chemo and labs were great. Physical therapy had Summer standing on a foam block trying to keep her balance while reaching for items at varying heights and angles. She did pretty well at that. Better than I thought she would do.
Summer made me sit out on speech therapy. Because of her facial paralysis, this is a fairly important appointment. I think Summer should spend more time working on exercises during the day and her therapist said the same thing. When we start the day, the nurses ask for her patient number at the registration desk. I always notice that she starts the day off meekly with her answers. So much so that the nurses always ask her to repeat this. I always think that her lack of right-side facial movement is affecting her communication skills. But, later in the day when she is more energized, I realize she can be clearly understood if she tries.
We had a 2-hour break again so we came back to Target House for Summer to take a small nap. I did some work and made her some leftovers for lunch. She ate 2 slices of garlic bread and about 3 spoonfuls of the Stouffers. Not enough. We did have a talk about what I can change-up for breakfast that would be better to eat. Aunt Candi and I were texting about this as well… Brainstorming. I am honestly ready to buy cinnamon rolls or something like that. I know she loves decent biscuits and gravy. Maybe some Grands and gravy?
It was timely that our next meeting was with dietary. They noted that Summer has lost about 5 pounds since her first day at St. Jude. Honestly… She has been so bloated from steroids and fertility… I was shocked it was not higher. I am not trying to sound judgemental, I honestly cannot imagine trying to manage your weight after massive surgeries and having so many drugs in your system that you can’t tell up from down sometimes.
Summer admitted to the docs that she is struggling with a desire to eat. She and I are going to try and be more conscious of it going forward. I got her to eat a Twix ice cream bar as we left St. Jude today… She said it was “meh”. Now I know her taste buds are jacked! The dietary nurse loaded us up with different health drinks that have more mature flavors like mocha and cappuccino. Anything to be more attractive to drink during the day… Because just like food… They want her to consume more beverages! She is putting down about 30oz a day when she should be putting down 64oz
We saw our primary care team of Katie, Lindsay, and Dr. Gajjar today. They signed off on Summer visiting Nate for his birthday this weekend. Gajjar was with me on letting her do as much as possible while she is still feeling well enough. I told him that she thinks her hair will not fall out because google says it doesn’t always fall out with proton treatment. He said it going to fall out. “That’s a given!” Usually around week 2. So, we have that to look forward to next week!
The last appointment was radiation. Again… Down an elevator… And then down another. (We actually take the steps… Because it makes us feel like we are being healthy) I did a little work while suffering through a formulaic Disney movie about dragons and a young girl. Sounds like EVERY Disney movie made in the last 30 years. 90 minutes later, Summer came out of radiation hanging onto her nurse. This is weird since she is normally ready and raring to go. The nurse said Summer didn’t want to get up off the table when they were done.
Hmmmmm… Hungry maybe?!?!?! We headed out and I hit her with that Twix as I grabbed a salad for dinner from the St. Jude cafe.
Summer hung on to me all the way to the car… Very pokey and tired. We did make a quick pit stop at the Goodwill near our apartment. She wanted a jacket and shirt for the theme party this weekend. She found an amazing jacket that I am pretty sure Angela owned in 1990. I can’t wait for her to show it off.
Tonight we had Chic’Fil e (I refuse to look up how to spell that stupid restaurant) supplied to Target House. Summer chowed down the chicken sandwich with no problem. Maybe this will be the food that gets her through Chemo? 8 months of breaded chicken sandwiches with pickles? I don’t care at this point. Whatever it takes.
Tonight I did this crazy task called laundry for the 2nd time since being here. Crazy the things we will put ourselves through when the family is in crisis!