Lex on Dex

Alexis is on Dexamethasone (or Dex for short), which is a steroid, for the whole duration of her induction period. Her 3 chemo drugs pulse in and out at different intervals, but her steroids are twice daily for the full 28 days. This medication is responsible for giving her the side effects of high blood pressure and high blood sugars that we're addressing with other meds and insulin shots.

It also has the more common side effect of increased appetite, and although we didn't see it initially for the first few days while she was in the hospital, we now are seeing it tenfold with Alexis. We knew we would be eaten out of house and home by our kids at some point in our lives. After all, when you have a pair of 10+ pound baby boys at birth, it's pretty obvious the fridge and cupboard are going to be overmatched at some point down the road. However, with Conner just 3 years-old, we thought we had a good decade before the teen years arrived and we found ourselves in this situation.

We were wrong. The time is now. And it's the little lady of the house showing her brothers how it's done.

We were warned that being on Dex makes one super hungry, but we were not fully prepared for just how hungry. All Lexi can think about, talk about, or dream about is food. She wakes up in the morning talking about what she will have for breakfast. Morning snuggy time is long gone -- it's all about getting Dad or Mom's butt down to the kitchen as quickly as possible to get to work. And the minute breakfast is over, the snack and lunch planning begins. She has trouble concentrating on anything for any length of time and just talks about how much longer it is until she can eat again. Even when we play the "think of" game, gone are the days where people and animals were the majority of things she would have you guess -- now she ALWAYS describes something you eat. Food is always on her mind!

Here's a typical day of food (where she is angry after we finally cut her off at every step):

1. Breakfast- two eggs with cheese, two pancakes, bacon, milk

2. Morning snack- container of yogurt

3. Second morning snack- cheese stick (she has learned these have no carbs, so Mom is more likely to give it to her.)

4. Lunch- triple decker peanut butter sandwich, banana, carrots and hummus, cottage cheese, milk

5. Snack- pistachios 

6. 10 chicken nuggets, cucumbers, apple, green beans, 2 cheese sticks

We try to give her extra food without going too overboard. But it's a balance, and even with the typical day above, she often isn't happy about it and cries because she's hungry. She also continually says her stomach hurts, but we've finally figured out this is because she is hungry all the time and not because something else is wrong.

Lex on Dex is an interesting day.

Controlling Cancer

We had noticed lately that Alexis's hair was starting to thin out a little. We asked the doctors when they thought her hair would completely fall out, and they said 2-3 weeks after chemo started, which is just about now. The normal process is for thinning to start and then for it to start falling out. Since we thought it would be a little scary for her to have chunks of her hair coming out, we asked her what she wanted to do, and she decided on shaving it. 

When we mentioned this to our family, we were promptly told that Uncle Scobie was planning on shaving his head in support of Alexis, just like he did when my Dad faced the similar fate with his hair. So, we called and made appointments for them both at the Hairy Elephant, where Alexis's has gotten her hair cut from the very first time. 

She got out of the car, and grabbed Scobie's hand and walked in. When we got in, I asked if she wanted to go first or whether she wanted to watch Scobie. We were prepared for her chickening out after she saw Scobie, and were okay with whatever decision she wanted to make. However, she shocked us and declared she wanted to go first. She walked over, picked out a movie, and went to the train car. Mom, of course, was a complete mess and bawling, but not Alexis. She was so brave. She patiently sat there (the stylist even commented that this was the easiest haircut she has ever given Alexis) and watched as they first cut her hair short and then began shaving it off. She only started to cry when there was about 1/6 left to go. And, we think that was because she was hungry and wanted to go home. 

After her came Uncle Scobie's turn. She sat in Dad's lap sucking a sucker and watching as Scobie's hair fell to the floor. When they were done, we did a few pics and put on matching (pink) bandannas. Brian and I were so amazed at the selflessness of Uncle Scobie. Instead of waiting for cancer to impact our lives, we decided to take control of it instead and take action. Uncle Scobie's amazing attitude made the whole experience more uplifting than we ever could have imagined shaving off all those Goldilocks curls could be. We are so grateful to have him in our lives. 

Alexis couldn't wait to try on all the new hats mom, Aunt Alisa, and cousin Natalie had bought her. So proud of what a strong girl she is and what an amazing family we have! We are going to continue to embrace this cancer our way and not let it control us!

Cousin Support

Alexis's cousins have rallied around her. They continually sent videos while she was in the hospital. Alexis loved seeing them and they helped her spirits. During a recent road race in our home town, they even made a sign to support her. Laura's brother and sister and their spouses have been amazingly supportive in taking the boys for a while, making videos, offering moral support, etc. It is such a blessing to have such great siblings, and we don't know how any of us would get through this without them. 

It's also amazing the support from our friends. We have received care packaged, meals, cards, phone calls and support. When you go through something like this you at least get a renewed faith in humanity and are continually amazed how giving people can be. 

Home Entertainment

It has been pretty uneventful since Alexis got home. We are starting to figure out the medications, but they still take a while. She is getting better about taking them. We are getting more efficient at counting the carbs in food to adjust her insulin and have done a decent job of maintaining ok blood sugar levels. 

The hardest thing has been keeping the kids entertained at home. We are to keep Alexis away from germs with her suppressed immune system. So, no indoor public areas. They said we could go to outside places as long as they weren't too crowded. Since it was our first weekend, we decided to stick close to home with activities. We have painted on the windows, done lots of crafts, stickers, and we even organized an outdoor treasure hunt. With Papa and Mini in town, we also got out with the boys for one morning at the science center. The boys had a blast, and we are trying to remember that this is taking a toll on them as well, and we need to focus on them as well.