Super Hero Cooper

As a society, we put a lot of stock in numbers. They're important. They quantify things, they measure, the count down, they show progress, regression, they help us analyze, and they help us understand. This week, February 15th was International Child Cancer Day. As a part of this day, I saw a few people that we know from Hopkins post their numbers...how they quantify a diagnosis. How they have measured the last few months of life. They did this to raise awareness but also to help others understand. Numbers can give you perspective. It also paints a picture of how each child's journey is so different, but honestly, when you look at the numbers, regardless of the journey, it is beyond alarming. One of the challenging things in this journey is trying to help others understand diagnosis and path of treatment when people ask questions. People just have a hard time wrapping their brains around pediatric cancer because it is so different from adult cancers. People often compare it t

Thankfully we have 14 days left of intensification but chemo is done for this phase! Cooper has lots of chemo ahead but this was certainly the worst of it and we hope everything will get easier from here on out. Just an idea of what Coop has been through in this phase: 16 rounds of IV chemo 2 anesthesia days with spinal chemo 13 days of at home oral chemo 10 days of steroids Cooper took his last dose of cy"terrible"ine (which he calls it) on Saturday. He was having the at home nurse come to the house and give chemo through a shot daily. He handled both the needles and the drug like a BOSS! Cooper felt well enough to even get some time outside to play when we had some beautiful weather. We were so happy that Cooper not only had energy, wanted to play and felt good but that he wasn't sick or laid out on the couch like we thought for 2 weeks. That being said, his levels really started to tank between the first 4 day chemo set and the second. Last week we went in fo

So on Friday we did not make counts to start the second part of intensification, so we went in Wednesday and Coop made counts like a boss! It was such a long clinic day, but we were thankful to go home. We were the first ones there and the last ones to leave. We barely got out before they would have had to admit us to inpatient. Luckily this week, Kristy was able to attend clinic with Coop too. Last week she was getting over the shingles and couldn't go to clinic as a precaution to the other patients there. Good old stress induced shingles...Ugh....just what every parent with a baby and an immunocompromised kid needs, right?  Cooper actually got out on his bike during the few days we had after he didn't make counts. We figured if he was asking to go outside, he was feeling much better and we had a pretty good feeling he would get going on Wednesday.  Cooper had the choice to leave clinic and keep his port accessed at home for the home care nurse to come out and admin