It’s been a good few days since my last blog post, so I thought I’d give everyone an update on what’s been going on. For the last 7 days Caleb has been getting his oral chemo at home. This cycle we were able to give it to him at night which has worked out so much better than last time. This chemo makes him very drowsy and dizzy and by giving it to him at night he is able to sleep through the worst of these side effects.
Since he can’t eat for 2 hours before, or 1 hour after taking the chemo, the easiest thing is to give it to him in the middle of the night. So around 1am we’ve been waking him up, we sit him up in bed and give him the chemo dose plus a dose of Zofran (for nausea) and then he goes back to sleep. He has been an amazing kid. On top of waking him up, the chemo tastes terrible so I know it’s not a pleasant thing to be woken up for that reason. But every night, after just a little whimpering, he would sit up in bed, drink the chemo, drink the Zofran, take a couple sips of water to wash the yucky taste down, and lay down and go back to sleep. Last night was our 7th and last dose of the at home chemo for this cycle.
I feel like this whole chemo process is a lot of hurry up and wait. We started cycle 2 with this at home chemo and we had to wait to see what his counts would be. Now we have 1 week off while waiting to go inpatient again for the stronger chemo drugs. It always feels like there is a lot of time to fill, which is challenging with the often cold and rainy weather in Memphis, and also with Caleb’s immune system still being pretty low. We got his blood counts back yesterday and he isn’t in the really low level he was at before, but most of his counts are all still considered “low”. Bringing him to a playground, or Chuck-E-Cheese, or places with a ton of germs in the middle of cold and flu season isn’t something we are willing to do. So we are at home and inside, a lot!
Here are his latest blood test results:
There are good and bad moments with us being cooped up inside, especially since Tyler had a 3 day weekend because of MLK Day. But there have been many sweet moments over the last week as well. Even though there are some hard moments (really hard sometimes!) I am always thankful for the extra time I get to spend with my boys. I love seeing their individual interests develop, and also seeing the relationship between the two of them grow stronger.
They love to play games and puzzles and even rediscovered a toy they got a couple Christmases ago (their Leapfrog TV). It’s the perfect thing to keep them busy indoors and it’s sneaky because they think they are playing video games but all the games incorporate learning. So I am watching them do addition, subtraction, and learn the alphabet and they have no idea. It’s a win win!
Caleb’s imagination is really blossoming too! We create things with play-doh, he makes me pretend food in his little pretend kitchen, we play “doctor”, we play “construction worker”, we build new tracks out of his zoom tubes tracks (Nana hit a home run with that Christmas present!!). And of course he also has fun with just a good old fashioned cardboard box. I keep looking for signs that his learning or cognitive ability is suffering but I just don’t see it yet. He is so bright and comes up with the best creative ideas. I know there could be some long term effects that we don’t see yet, but I am just so grateful for his bright little personality.
Caleb has also developed a love for cooking. I can’t make any meal now without him asking if he can help. And of course I don’t have the heart to say no (even if I’m in a hurry) so I always find a way for him to be a part of cooking a meal. He helped daddy make cubed steak, rice and green beans, he helped me make meatloaf, and he makes his own pizza for lunch! This kid may have a future as a chef!
Caleb has also developed a love of arts and crafts, especially painting. That’s his new favorite thing. I’m so happy to see him get creative in this way as coloring was one of my favorite things to do growing up!
Saturday we did sneak in a movie. We figured it would be ok for Caleb to go to the movies because the theaters we go to are always pretty empty. We just made sure he washed his hands a lot. We all really enjoyed getting out as a family. And when we came out of the movies there was a snow flurry. The kids were definitely amused and even though they don’t like the cold, they think the snow is very cool! And also a pic of us going to Starbucks in the snow flurry so I can give a shoutout to my wonderful husband who always makes sure I’m caffeinated, even in the snow!! Thanks babe!
We did sneak in some outside time on Monday. It was in the 40’s, but we bundled up and made it happen… for about 20 minutes HA HA! Caleb looks like a homeless person in the pic of him eating his Lunchable on our porch! But look at those smiles because they finally got to ride their scooters for a few minutes! They also found a dandelion that they made a wish on together.
We may not have asked for this situation, but there are some good things to come out of no other distractions, no friends to hang out with, and no other social obligations. It’s lonely sometimes. But the best thing to come out of it is how close we are becoming as a family, especially the bond between Tyler and Caleb. They are always thinking of each other. When Caleb is offered a sticker for being good at St. Jude he always makes sure to get an extra one for Tyler. Tyler colors him pictures at school and Caleb has also done the same. The absolute sweetest was today when Tyler came home with his pictures of The Hulk that he drew for Caleb at school… I mean it’s a stick figure with muscles. It doesn’t get any better than a 5 year old’s drawing of one of his brother’s favorite super heroes. It’s so incredibly sweet and even though the two of them drive me crazy there are so many sweet moments between them.
So, that’s what we’ve been up to the last few days. We are kind of just trying to live normal life in this strange limbo. I’ve been struggling because with the new year everyone is setting goals… all types of goals in their personal lives, fitness, career, etc. I’ve been trying to figure out how I can maintain purpose when some days all I want to do is sleep. So right now I’m just trying to be the best mom I can be. I try to work in fitness when I can. I have no idea what career I will go back to when this is all over. I’m just trying to trust that we are here for a reason even though I don’t know what that is. Maybe it’s that Caleb needed to go through this to fulfill a larger purpose one day. Or that we needed to go through this to get closer as a family. Or maybe I needed to live somewhere other than Florida to realize how wonderful Florida is! HA HA I’m kidding. Had to lighten the mood back up. But honestly, some days are a struggle and I’m barely holding it together and other days I feel like an awesome mom who has it all together. Depends on the day. Trying not to count down the time we have left here. I get so homesick sometimes.
Tomorrow Caleb has a couple appointments but they are all “fun” appointments as we call them. He has Occupational Therapy, Speech, and Physical Therapy. In each of these appointments they basically just play different games with him to measure how he’s doing in each of these areas. He likes these appointments so it should be a pretty easy day. Then we go back on Tuesday to get more blood work done and get admitted for our next inpatient stay. I’m not really looking forward to that, but after spending 9 nights in the hospital within a 2 week span we have our routine down. We know what food to pack, what activities to pack for Caleb, and how to get as comfy as possible on that absolutely NOT comfortable pull out hospital couch! More updates soon!