TBall, picnic and Blackhawks

Conner started Tball today. He had a blast learning to ground balls, how to hit, and running the bases. Dad had a blast watching him and even restrained himself from telling the college kid that maybe he should just work on hand/eye coordination of hitting the ball, instead of talking about taking a step as you hit, squashing the bug with your back foot, etc. Conner also bravely wore his cubs hat. He loves his Chicago teams. A neighbor commented on his Blackhawks hat. He said, "Yep, and I like the Cubs, and I live in St. Louis." He's proud to be a Chicago sports fan, and Dad is even more proud. We just hope his hat choice doesn't affect his playing time!

Dad's co worker arranged for him to have tickets to the Blackhawks playoff game in Chicago. So, he took off for chicago for the night. The kids and Laura went swimming for a bit and then met friends at the park for play and a picnic. 

Brian had a great time at the game (they won in double overtime). Not only did he get great seats, but unbeknownst to him, the co-worker that got him the seats told the Blackhawks about Alexis having cancer. So, between the first and second period, they presented him with some Blackhawks goodies and said, "we are thinking of her and wish her luck." What a great organization and so nice of them to go out of their way to make a fan so happy. 

School's Out For Summer

Today was the last day at Rockwood. That means we are done with morning routines for the summer. Alexis had a great last day of kindergarten, and I had two moms tell me how their boys said Alexis was so nice. Always nice to hear those things.

Conner had his last day as well, and even got to play with Mrs. Kelly. She was Alexis old speech path that played 30 min each week with Conner to provide a friend to talk to should he need it this year. Instead of talking, I think they mostly played games, and by games I mean she let him beat her at everything. They had a great time, and she have him a rocket launcher and a pic of the two of them today. He also said she was going to take him to Chicago for lunch to meet her Gardner. Pretty sure that isn't actually what she said, but we will try to meet her for lunch at home sometime this summer.  He went to sleep happy staring at her picture and I warned her that if he started stalking her, it was her fault. 

Struggling

Alexis is struggling a little bit these days. She has low energy and often looks at us and says, "I don't feel well." However, it is hard to pinpoint always what is not right with her. Since she isn't the best with her language, she doesn't always accurately convey what is actually bothering her. Last night, she basically didn't sleep the whole night. She was up going to the bathroom, coughing, and just not being tired since she is on steriods this week. This has been a symptom when she is on steroids that she doesn't sleep, which means mom and dad don't sleep, and we are all exhausted! She also looked rather pale. We called the doctor to see if they wanted to test her blood given it was so low on Tuesday, and they didn't know if counts were going down or going up. They opted to bring us in and make certain we didn't have any issues over the weekend.

Being the first day of summer, I knew that friends probably had a lot of fun plans with their own kids and didn't want to bother any of them. My friends have truly been amazing and dropped their lives and plans so many times. I figured it would only be a couple hours, so we ventured to the hospital as a family. As we got onto the elevator to go into the hospital, Conner turned to an African American male standing next to us. As he opened his mouth, I thought, well, this is going to be embarrassing...like the time I demanded to the overweight man that came over that he tell me when his baby was coming out. As much as my mom tried to shut me up, I was persistent. I knew that payback was coming. Conner opened his mouth and said, "I really like your hair." The man had long dreadlocks. I waited for a response. It was innocent, and he really meant it, but you never know how people are going to take things. The man, responded, "Thanks." Gavin then decided to chime in and say, "I like your skdnfsodk." I have no idea what he said, if it was appropriate, but I figure if I didn't know what he said, neither did the man. We then got onto the elevator, and he said to Conner, "I really like your shirt." Conner said thanks and they continued to talk. By the end of the elevator ride, they were high fiving goodbye. I guess my payback it still to come.

We went to the blood lab to have the labs drawn. Then, I told clinic we were going to walk around the hospital for the hour it takes to get results. We started in the beautiful rooftop garden they have there. The kids loved it. Gavin loved it so much he literally ran everywhere! That is until he fell into the water. One soaked foot later, we headed out to venture down for a snack. I let the kids go into the gift shop and pick out whatever they wanted...skittle for Gavin, M&M's for Alexis, and Sour Patch Kids for Conner. They thought this was the best day ever. They then ate their snack.

We headed back upstairs to check in on the blood results. her red blood had come back up to 9.4. Still not at normal level, but on the upward trend and no blood transfusion needed. Her white count was still rather low, but her ANC (white count formula that indicates ability to fight infections) was around 3,000. Again, not normal, but not that low either. So, we bolted from there and was happy to survive a hospital day with all three kids!

Missing Out

The theme of this year has been missing out. Missing out on get togethers, school, and activities due to Alexis and her health. However, today it was Gavin's turn. He had his last day of school and his closing ceremony where he was to sing. In the middle of the night, he work up with 103 degree temp. He was freaking out and running around the house. We got him calmed down, gave him a little tylenol. So, we didn't send him to school on his last day, and he had to skip his final performance at school. He never got a temp again and was running away all day. However, we have learned that just in case, it is not worth risking the health of others. Temp meant that someone other than Alexis had to miss out on their activities. Maybe that will build empathy?

Tuesday Treatment

Alexis had her normal treatment day today. She got her monthly Vincristine, and they looked at her blood counts. Her counts were a little low, but not low enough to make any adjustments to her meds or have any transfusions on board. If she drops counts twice, they will adjust the dosage, so it isn't so hard on her body. I almost wish that it had dropped lower, as I feel like she has been extremely tired during this "maintenance" phase. Could be the cold she has had now for 2 months that she can't shake. Or the fact that her red blood is 8.2, but they normally transfuse at 7. So, she is low on red blood and low on energy. Makes for a bad combination.

We spent the afternoon with some friends that came into town to visit. The last time we had seen these friends was the morning Alexis got diagnosed. We got to spend a blissful morning with them before getting hit with the awful news. It's nice to be back to a somewhat ok place and get to spend time with them again.

We'll hope she can kick this cold and get her counts up.