So, let’s see… the last 2 days have pretty much been the same routine each day. He was given Mesna and Cyclophosphamide about 5am each morning. The rest of the day he has just been hooked up to the saline for hydration. On top of that he is on a rotation of Zofran, Benedryl and Ativan as needed for Nausea. For some strange reason he doesn’t react to Benedryl like most kids do. Instead of getting sleepy he gets very agitated. If he’s laying down he gets very unsettled, and if he’s up and playing he gets very demanding and it’s almost impossible to make him happy. This isn’t like Caleb at all. And every single time this mood swing happens it seems to be after they have given him the Benadryl. For the next inpatient stay we are going to see if we can just use Ativan and cut out the Benadryl. We’ll see… it’s nothing we can’t handle. It’s certainly better than him being nauseous, but it’s very strange how his mood changes when he’s on it.


So because of that reaction, and the Chemo really starting to take effect, our days have been very up and down. He asks for a lot of different things to eat, but takes one bite and then doesn’t want any of it. This happens almost non stop all day. I think things don’t taste the same to him, or don’t taste good at all to him, and then he changes his mind about what he wants. All of this is normal for what he’s going through, but doesn’t make it any less exhausting on us trying to make him happy. It’s so important that he eats so we give him anything he wants, any time he wants it. His favorite lately has been the good ole peanut butter and jelly “swam-wich” (Caleb’s word for it). He wanted so many of them we just brought our own bread and peanut butter and jelly there so he could make them. The classic PB&J was introduced to him this trip by Grandpa and Grebbie… Caleb prefers a little bit of peanut butter, a lot of jelly, hold the crust. He’s not spoiled or anything HA HA!

We’ve been passing time in the hospital the usual ways… movies, iPads, playing “doctor”, playing “ice cream shop”, and playing Play-doh. We also had a chance to do some learning activities in one particular book where he gets to cut and paste different items on each page of the book. He loves getting to cut with scissors!

Meanwhile back at home (because life still goes on outside St. Jude) Grebbie and Grandpa had Tyler all weekend. They had a ton of fun playing outside in the unseasonably warm, but beautiful weather. They kicked the ball around, he rode his scooter, and they went to the Memphis Zoo. By Sunday afternoon I know Tyler really missed us. We had been away 2 days already so I went home to spend some time with him and get him back on track before school. We played volleyball outside and played games inside.

Luckily Caleb hasn’t actually gotten sick again since the other day, but we’ve had a couple close calls. There are times when his tummy hurts and he really doesn’t feel well. He just curls up in his bed and waits it out. It breaks my heart because I know he is miserable when he’s feeling like that. Yesterday after that happened he slept from 3pm all the way through to the next morning with the exception of waking up to use the bathroom every hour (thanks hyrdration!) and waking up for a little while at one of the vital checks. But he slept A LOT!

Today after feeling sick and laying around in the afternoon he completely recovered. He perked up and started being silly and playing. Then I told him Tyler was going to come visit him and he was so excited. He decided to color Tyler a picture. Then when Tyler came they played so well together! It was wonderful to see them together and laughing tonight. Even though I know they end up fighting when they are together all the time at home, there wasn’t one disagreement tonight. Tyler surprised Caleb with a little toy, and Caleb kept telling Tyler all about his “buddy”, and how we put the cream on (numbing cream), and they put the needle in and he doesn’t even feel it! He also showed Tyler how his medicine is hooked up to his buddy (port) through the tube and he assured Tyler that it doesn’t hurt him. Tyler looked concerned at first but once they started playing they both forgot that any of this was happening. I think the entire 2nd floor could hear their giggles from the little family waiting area they were playing in.

Everything seems to be on track for us to go home tomorrow! This stay pretty much ended up being the same length as the last scheduled inpatient stay so it’s exactly what we expected. Now we go home and put him in a bubble while we wait for his counts to bottom out. That will happen in the next 7-10 days. We do not want an extra inpatient stays like last cycle, so we will be even more cautious this time around. That fever episode was very scary, and even though the cause wasn’t our fault, I will do anything to avoid that happening again.

I am proud of how Caleb continues to handle everything. He gets bothered around the clock to drink meds, do vitals, open his mouth and say “ahhh”, walk around the room to show his balance, do his mouth rinse, and on and on. It gets old real quick, but for the most part he’s very cooperative and always makes the doctors and nurses smile. I am even more proud of my husband who somehow continues to work during all of this and took an extra night at the hospital tonight because he knows I am more comfortable at home in my own bed. I know he is too (who wouldn’t be!?) but he still insisted that I go home and get a good night’s sleep. I am grateful that he takes care of me, but I guess we take care of each other. I can’t wait to all be home together tomorrow night!

2 thoughts on “REST, PLAY, AND PB&J

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  1. I have added your family to my prayer list that I keep on my cabinets at work. My daughter’s best friend’s little girl got AT/RT when she was almost 2 in 2013. She earned her wing 11/6/14 because someone had the flu and came around her when she had zero immune system. So, yes, be vigilant!! If there’s any doubt, any chance, they don’t visit. Not worth the risk.
    I love how you and your husband work together! I can’t quite explain how your journey seems so different from so many others I have followed, but it does. Has to be your faith, your hope, your attitude and your love.
    Sending you all love, hugs and prayers!

  2. As always, my thoughts and prayers continue for you and your family. You two are such good parents and take good care of each other as well. I just wanted to comment on Caleb’s reaction to Benadryl. I also don’t react the usual way. Benadryl makes me very, very hyper. I almost literally bounce off the walls. I take it occasionally for certain allergic reactions and discovered quite a while ago that if the pills are near their expiration date, I reaction is much less. When I was younger, the local pharmacist would call me when they had some “old” Benadryl!

    Keep up the good work to make both boys happy. God bless you all.

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