Back in her own bed

Enjoy the little things in life because one day you will look back and realize they were the big things.

That sentence was something which went up on the wall in our kitchen about six months ago, but admittedly has had an even deeper meaning the past few days. With Lexi back home after a couple weeks in the hospital, and inevitably facing more hosptial time in the days ahead, we've followed Lexi's lead in taking the time to enjoy some of the simpler things in life. Like sleeping in your own bed.

Of course, a mom and dad (especially dad) being more willing to snuggy in bed with her rather than hold the line on expectations and boundaries doesn't hurt, but Lexi genuinely has loved being back in her own bed, even when alone. The onslaught of meds at home has been a little bit of a rude awakening versus the old status quo -- 6 meds in the morning, 4 meds at night, 4 meds as needed, 4 finger pricks before meals, and 5 insulin shots per day -- but even those are something she is adapting to quickly.

She also continues to amaze us and inspire us with her courage and attitude. Especially when it comes to shots, something which causes anxiety and fear in many adults. Lexi shows some anxiety in anticipation of the event most times it happens, but generally just needs one security blanket (sometimes mom or dad's hand, sometimes an uno card), and then handles it like a champ start to finish. But tonight she took the inspire part to the next level after Dad popped her in the right arm at bedtime. After Dad gave kisses, shut off the light, and began to close the door, Lexi said "Thank you for giving me a shot Daddy, I love you."   

Home

We were surprised today when the doctors did morning rounds and said they were thinking about sending us home. We didn't get too excited, but as the day went on, it became more real. By the afternoon, the endocrine team had given their blessing and the oncology doctors said with her ANC count (indication of her immunity system) up to 500, they felt comfortable with her at home. Activities still limited and visitors have to be symptom free (and use a lot of hand sanitizer), but she is home!

It was great timing since the boys were already on their way home from "cousin camp" in Iowa. We were all happy to get our family back together. However, we have a few million drugs to take care of. So, when we got home, we spent some time developing a spreadsheet and color coded system to keep everything straight (14 drugs were sent home with us). Worth getting her home! Now, we will do everything we can to keep her from going back.

The plan if she doesn't get a fever is to do the last three treatments of chemo as outpatient. We will go there every Tuesday to complete the transfusion. We will also go on Thursday's to get a blood test to make certain she doesn't need any transfusions. Other than that, we need to monitor her blood glucose and give her insulin shots at home and make certain she remains fever free. 

Hats

Alexis was taken to the waiting room today to pick out a hat. Matt's hats is an organization started by a kid who had cancer diagnosed at 9. He is now 17 and has been cancer free for 8 years. He started this organization to find crazy hats for kids with cancer and comes to the hospital to pass them out. Alexis had fun picking out the specific hat she wanted and was very opinionated. Such an amazing thing started by a kid. How inspiring these kids are. 

We are still trying to figure out insulin levels. We are now not only correcting blood sugar, but trying to account for carbs eaten as well. We gave her the amount that they said came on her dinner tonight (minus a little). Part way through, she didn't want to eat the test. Since we had already given her the insulin dose, she would either be low blood sugars (which would be worse), or I had up force her to eat enough carbs. She did it and then ended up puking some. This is an awful game we are playing. After that, the doctor said if was probably better to give her a shot after she ate. That's a no brainer...don't want to repeat that! 

Spinal Tap

Alexis got her second spinal tap today along with her second round of vincristine . For the spinal taps, they put kids under so they can get it in the exact right area without risk of them moving. She handled both chemos really well and was most excited about getting to ride in a wheelchair to surgery.

I thought I was handling things well too until I went to grab lunch. Upon walking to the front of the cafeteria, a man bumped into me causing me to spill my drink everywhere. I totally lost it and started bawling. They said it was fine and to just go get another drink. So, I promptly listened by dropping my wallet, cell phone and food on the counter for anyone to steal. Blithering idiot, check. No brain to process your actions, check. I guess I don't have it together after all. Proof that kids handle things way better than adults. 

Socialization

Alexis has a very sweet roommate to whom she has started talking. She comes over to our half of the room to do crafts, play games, etc. In addition today, they went on a spy mission to find people and went to the garden together. Alexis is doing a great job talking to her and learning how to socialize. At least we can work on something if she is in the hospital.

Alexis also got special permission from the nurses to have a friend visit her. Teagan played in the playroom, went to the garden, and played a couple games of CandyLand. Alexis was so excited to see a familiar face!