This weekend was definitely fun, as Aunt Taylor and Uncle Pinke (Aka Uncle Stinky) came to visit. We had a blast and Caleb felt pretty good most of the weekend. He was a little up and down, but we completely expected him to be that way with the way this cycle started, and now that he has had so much chemo.
Friday morning we all got up early to take Tyler to school and get Jonathan to his 8:30am Platelet Donation appointment at St. Jude. (For those that are confused by names right now, Pinke is Jonathan’s last name, and we almost always call him Pinke and not Jonathan, so the kids know him as Uncle Pinke). We were able to show him around St. Jude since he had never been there before, and Caleb got a big kick out of the fact that he didn’t have any appointments on Friday but Uncle Pinke did. Jonathan’s platelet count was so good he was able to give a double donation of platelets. Words can’t express how much it means that he wanted to do that. Caleb receives platelets on a regular basis and they are always needed, so for him to want to do that was pretty awesome. Caleb also got to go back and see Jonathan hooked up to all the machines. I think he liked seeing someone else go through what he usually has to go through. When you donate platelets you get a goody bag with snacks and a hand written thank you note. I thought that was pretty cool!
After the platelet donation we went to show Jonathan the huge Bass Pro Shop in the Pyramid. Caleb loves looking at all the animals and also trying out all the 4 wheelers.
Caleb was pretty worn out after a busy morning so we came home to let him take a nap. Giving him that time to rest is very important for his recovery, and let’s face it, also his mood for the rest of the day. I just loved my view as I layed with him while he rested.
Taylor and I took care of the kids Friday night to let the guys have some hang out time, and then on Saturday they let us girls go out for some lunch and shopping. It’s always nice to have a break, and while Taylor and I were out they declared the day “bro day” and did guy things ha ha! They went to play arcade games and the boys had a blast (all 4 of them!)
Aunt Taylor always comes up with awesome surprises for the kids, and this time she brought something to take our dance parties to the next level… light up gloves!! We had one super awesome dance party. Don’t mind the blurry pictures, a glow party must happen in the dark ha ha!
Saturday evening we had a little scare with Caleb’s counts. We could already tell by his cranky mood that he wasn’t feeling 100%. Then he was in the bath tub playing around and somehow got some water up his nose. When the water came out a bunch of blood gushed out with it. A bloody nose is a sign of low platelets and last time this happened his platelets were extremely low. After calling the Med Room at St. Jude and evaluating him, we felt it was better to be safe than sorry. Uncle Pinke and James took him in. Luckily his platelets weren’t too low, and his ANC is still 700 (that’s pretty good but it is dropping) but his Hgb was a little low. They didn’t do anything about it last night, but they did call us in for a blood transfusion today (Sunday). We have never had to get a transfusion in the middle of the first week of the cycle. But as we knew, his numbers are definitely dropping faster this time. I know overall it will make him feel better so it’s not a bad thing. James took him to St. Jude for that while I stayed with Tyler.
Overall we had such a great weekend. We were so sad to say bye to Uncle Pinke and Aunt Taylor. We probably won’t see them again until we go back home to Florida. But we have great memories of all the fun times this weekend!
It’s almost Midnight now on Sunday night and James and Caleb should be home any minute from the transfusion. We will continue to let Caleb rest and recover as much as possible. Tonight was night 6 out of 7 for the oral chemo we give at home. Then he will have a week to recover further before we go inpatient for the next round of high dose chemo. I am hoping his numbers will recover in time to get admitted as planned next Tuesday, otherwise I think we will be in the hospital on Easter. I guess that is ultimately not a huge deal, but I feel like it wouldn’t be fair to Tyler so I hope we are out by then and can all be at home together. I will keep everyone updated on counts and numbers as we know them. Our next appointment is Tuesday.