Museum

With Alexis back in school, we have Friday mornings free with the boys, and we are able to get out in public. So, we went to a children's museum Friday morning. There was a big slide that you had to climb up, and Gavin couldn't do that very well. Conner was so sweet to help him each time to reach the top. By the end of the day, though, Gavin had figured out how to do it on his own. I love these two boys together! Nice for all of us to get a little time out of the house as well.

80's

Alexis's elementary school is celebrating 25 years, so they dressed in 80's clothes on Friday. Since we couldn't do a side ponytail or ratted bangs for Alexis, we just tied a big lace bow around her head. I think she can pull the 80's look off pretty well.

Daisy Badge

Alexis had a Daisy event on Wednesday night. It was a mother-daughter Karaoke event. I was a little nervous going, since Alexis has enough issues with her speech and about the only songs she knows is Wheels on the Bus and Jingle Bells. I wasn't wanting to be the focal point, but was willing to belt out off tune to help her get her badge.

Luckily, the moment we walked in, a little girl walked up, grabbed Alexis's hand, and whisked her off. I tried to hang back and let her do her thing. They talked for a while and got cupcakes and then sat down. Next thing I see, Alexis just keeps shaking her head no. Of course, my inner mom is screaming, "Don't shake your head no! Do whatever she wants...she wants to be your friend!!" Instead, I calmly walked over and asked Ella what she was asking. She informed me she was asking about singing karaoke together. I turned to Alexis and asked if instead of singing karaoke she would want to go up while Ella sang and dance instead. She was excited about that idea, so I walked away and let them continue on. I'm looking forward to the day when she can find her words and voice to explain that, so she doesn't come off as standoffish. Luckily, at this age, kids are easy going and aren't put off easily.

Ella, Alexis, and other girl scouts that came over to talk to them spent the night dancing and karaoking. Alexis had a permanent smile on her face. My heart totally melted, and I was so amazed that this little first grader had the ability to have such an impact on not only Alexis, but me as well. She didn't care that Alexis was bald, has a hard time talking, or told her no 100 times. She was born with a gift of acceptance and caretaking that most people have to learn or never do learn. I just hope Alexis can continue to meet these people in life that give her a chance and get to know what an amazing little girl she is. For tonight, I wasn't proud that she got her first Daisy Badge, I was proud that she has friends and is starting to get how to interact on a social front.

Smile through It

Alexis started her next round of chemo today. She had to make counts in order to tart te next round. Her intrathecal was scheduled for 11:00, and they asked us to come in a little earlier this morning than our previous appointment was set. Luckily, we have a couple awesome teachers at the boys school who took then a few minutes early for us. Glad that was the case, as we got back the blood test results at 10:55. 

She did a great job getting accessed. There were no tears, and she was so proud of herself. She is so brave! 

Her ANC was 896, and 750 is the cut off for starting chemo. They rolled her in at 11:05 to administer the chemo. Nothing like squeaking in right under the gun. They gave Alexis cybaratine instead of methotrexate. Since they finally believe the methotrexate is the cause for the seizures, they wanted to switch to an alternative. We were a little nervous going in, as her seizures have continued since we last intrathecal. A little nerve racking to add additional drugs when they are still having effects. She did great, though, so now will be looking for seizures in the next few days. 

Since we didn't have time to get her two chemos in clinic before her procedure, we headed back up. She got vincristine and methotrexate through her IV. Although we know the vincristine helps hugely, it is still hard that we started that back up, as her voice has been getting better. Last week her speech pathologist even took her to do speech for the first time in a couple months. The bad news is that her voice will be going down from here. The good news is that we have seen improvement in the last month, so hopefully when she is off it for good we will continually see it improve. 

We also discussed remission and cure. What we didn't realize is that she was actually declared in remission after the first month. News to us! After this two month round, we will be going on maintenance. Maintenance protocol will depend on what randomized arm of the study she gets selected for. All arms have two daily chemos for two years. There are two additional drugs that she will get either each month or every three months. Finally, she will get intrathecal (spinal) every three months. So, although it sounds like maintenance is an easy term, it will still be a lot for her body. 

Long road, but we still feel comfortable it will be a successful one! 

House of Safety

Alexis had her first Daisy outing today. The girls went to House of Safety, where they learned about fire safety. They first watched a video. Then, they went into a kitchen and there was a simulated fire in both the oven and the trash cans. The girls took turns shooting a fire extinguisher at it. Then, they had a mock bedroom where they taught them to crawl on the floor and to feel the door to see if it is hot and finally how to crawl out the window. Finally, they got to try on fireman clothes and play in the rescue vehicles. I'm not sure what Alexis learned, but I learned I failed this class. No fire exit strategy, no safe meeting place outside, and no talking to the kids about stop, drop, and roll in this house! I do change the batteries in the fire alarms and we have fire extinguishers. So, mom at least will be ramping up her fire skills after this visit. Fun day for Alexis to get out as well.