ANOTHER SMALL DELAY

We were all set to go home today. Caleb received his last dose of chemo about 4am, and everything was on schedule for us to be discharged this afternoon. However overnight Caleb spiked a fever. They aren’t exactly sure why, but the one thing that is for sure is a fever is a big deal around here. It sends groups of people running around to collect blood for cultures and administer Tylenol and antibiotics. With that, Caleb’s fever came down for a little while. But before I go on with the fever story, can we just take a moment to celebrate these pics of Caleb’s last bag of inpatient chemo!!! It was definitely a happy moment when that drip ended!

Even with the fever, since the initial check on cultures was negative and sometimes the body can do strange things on chemo, they were still going to let us go home. About 1 hour before discharge Caleb spiked a fever again. He also has had a very upset tummy causing a lot of accidents today. This is very unlike Caleb! Even with all of the meds, hydration, etc., he rarely has an accident. So unfortunately the day took a rough turn. Before we knew it we had about 5 outfits worth of dirty clothes and we landed ourselves in here for at least another 24 hours. At this point we feel the mostly likely culprit is some sort of stomach virus that will probably pass on its own.

Caleb mostly slept today. You could really tell he was sad and didn’t feel well. He did perk up for just about 30 minutes this afternoon to do a craft project. He loves to build and paint these little wooden sets we get and today he built a train. He doesn’t even need my help with the glue anymore. He’s such a big boy and he put the train together and painted it all by himself!

When the late afternoon rolled around it was time for James to leave to go pick Tyler up from summer camp. Another night split apart is never fun and Caleb was super sad to say bye to daddy!

Tyler misses his brother so much! When he got home from summer camp he immediately pulled a paper out of his backpack. He said it was for Caleb and he hadn’t had a chance to finish coloring the picture. He finished coloring the picture for Caleb and then hung it above his bed to surprise him for when Caleb gets home tomorrow. They are always thinking of each other, and Tyler’s gesture was so sweet. It melted my heart to hear James tell me about what he did… now if I could just get the two of them to stop fighting over toys our little family would be perfect ha ha!

So, we will wait for tomorrow and hope whatever is causing the fever will pass. So far the cultures have been negative, which is good. Cultures would show either an infection in his blood or with his port, or if he was going into sepsis. Those scenarios are very serious so we do not want any positive cultures for any of that!!! We just need this fever to stay away now, even if we don’t figure out what caused it in the first place. But today was pretty much like every day of our lives since August 30, 2018… you can try to make plans but life is going to take you down twists and turns and you just have to roll with it. I am trying to focus on the fact that Caleb is doing so well and thriving here, and that we are one of the lucky ones that get to take our son home classified as NED (No Evidence of Disease). There are a lot of families here that aren’t so lucky, and I try not to lose sight of the larger battle when we are facing these smaller challenges. But, tomorrow is a new day and hopefully all 4 of us will be back together in time for the weekend, and we start Caleb’s last recovery period before returning home to Florida!