CATCHING UP

In my last post I said that we have had a lot going on, and we have, up until Friday at about noon. That is when we put ourselves on lockdown for COVID-19. But more on that toward the end of the post…

Last Wednesday evening we once again had the opportunity to speak on behalf of St. Jude, this time at the US 103.5 Country Jam at the Hard Rock Hotel and Casino. A little before the show we got to do a meet and greet with the artists for the evening. They were Kip Moore, Travis Denning, Morgan Evans, and Jon Langston. These guys are great friends with each other and told hilarious stories about one another while putting on an acoustic show with some of their hit songs. On top of getting to meet the artists, right before the show started James and I got up in front of the audience and told them a little about Caleb and St. Jude and his good news from last week! It was a great night, and any time we can do anything to help St. Jude we will be there. In return we have gotten to experience some pretty awesome things, and meeting more of my favorite country artists definitely adds to our list of awesome experiences. Caleb did not come to the show because first of all it didn’t start until 8pm which is very late for him, and second, the concerns about Coronavirus were already swirling at this point. For those reasons we decided to keep him home and not be exposed to more people than necessary.

Kip Moore:

Travis Denning:

Morgan Evans:

Jon Langston:

Video of us speaking:

The day after Country Jam we did Caleb’s “Ring The Bell” party at Tampa General Hospital. I wrote a separate post about that very special day so if you haven’t seen it you can check it out here:

Blog Post: RINGING THE BELL

So that brings us to Friday. Once again as the week went on there were growing concerns about the Coronavirus. The boys were only scheduled to have a half day at school, and James and I painstakingly talked about whether they should go or not. In the end we decided they could go to school because they had already been with the same group of friends all week. We didn’t think a few more hours with the same group of friends would make much difference. I am very glad I let them go because they both got to participate in some fun St. Patrick’s activities. Tyler’s class made Leprechaun traps. They had to design a trap that could catch a leprechaun using supplies like play doh, styrofoam cups, and popsicle sticks. In Caleb’s class the “naughty leprechauns” (AKA a couple of parents) came and messed up their classroom while leaving behind cupcakes, gold coins, and leprechaun punch. The kids came back inside from the playground and were soooo excited to find out the leprechauns had been there. I am always thankful for the time I get to spend with Caleb and his sweet group of friends.

For some reason I always take pictures of the boys together on or around St. Patrick’s day, so this year was no different. Here is a look back at some oldy but goodies, and some of them from this year. I can’t believe how much they have grown up!

So, that brings me to the dreaded Coronavirus. And I’m going to keep this short because everyone is already sick of hearing about it. With Caleb being immunocompromised we can’t take any chances that the media is just blowing this out of proportion. We have watched a small cut, the common cold, and less severe viruses put Caleb in the hospital and in a lot of danger. After talking a lot about the situation James and I decided that starting Friday afternoon we were not going anywhere in public and we would limit visitors. Our methods aren’t perfect but we will do all we can to keep Caleb safe.

We know this routine well, as we have been living in a bubble like this for about a year and a half. I would say we got to enjoy about 2 weeks of “normal life” and then the Coronavirus concerns started really scaring us. In a lengthy conversation with our Doctor at St. Jude he explained Caleb’s immune system like this… his neutrophils (a type of white blood cell that fights off infection) are like soldiers that just came back from war. They are back, but they aren’t strong enough to fight another war right away. This means Caleb’s counts have come up, but his body won’t fight a virus or infection like a healthy person’s would. Honestly my biggest fear right now is that he will get a fever and we will be forced to take him to the ER, even though the ER could pose more dangers to him. Because he has a port, a fever can not be ignored. We would have to seek treatment to rule out infection if that were to happen. It’s been scary enough in the past, and it would be terrifying given the current situation. It’s something that I will do anything and everything to prevent from happening.

At about the same time Friday as we were making this decision, major theme parks like Disney were closing their doors, and schools were announcing extended spring breaks or online learning. It all just solidified that we were making the right decision. I am sad about all the events that have been cancelled, and we had many on our calendar. And I am sad that we are missing out on things even if they haven’t been cancelled since we are trying to limit our exposure to other people. But mostly I am sad for Caleb. This was supposed to be his time… his time to go back to school and his time to start doing fun things again. The kids didn’t know how close we were to going to on our Make a Wish trip to Orlando… a week of theme parks and fun that was planned, but now postponed. James and I were looking forward to going on a real family vacation SO much! Just to feel normal again! I have been looking forward to getting Caleb back in school and feeling “normal” again since September 2018 and when it was just about to happen we get hit with a Pandemic! I have to admit I had my pity party. I took an hour to sob in the bedroom about all the things we were missing out on. And then I opened my eyes and looked around and realized we have been through so much worse. We used to do isolation in a 600 square foot apartment and now we have a big beautiful house with a swimming pool and playground… not a bad place to be stuck if you ask me. But most of all we have Caleb here with us. We have been through so much and I am not going to lose him now to some virus.

I can also tell all of you out there that may staying home with your family, that being in isolation with your family can actually be a blessing. I look back at our time in Memphis and we did so many art projects, crafts, and played games as a family because there was nothing else we could do. We couldn’t have busy schedules going to places, and events, and birthday parties… we just had each other to hang out with and that was it. And some of those times produced some wonderful memories. So I have no doubt that the next couple weeks, or however long this lasts, will be the same. We are blessed to not only have each other but a pantry full of food, sanitizer and hand wipes, lots of coffee for me (I am going to need it!) and yes, the coveted TOILET PAPER! Ha ha!!! We are all stocked and ready to ride this out as long as needed. If we didn’t have a medically fragile child I don’t know how we would feel or what we would do, but this is our life and we are prepared for whatever happens. More updates soon as we get creative with our time and I help the boys with their online learning which will start next week!