A day in the life of a child that has cancer. From this mom’s perspective. I can show you what it’s like, if you’re curious.
6:15am- Matt gets up off of his squeaky cot and takes a shower, trying not to make noise so Reese can sleep. If we were at home, he would have gotten up earlier, but he sleeps in since he is on his clinic rotation this month– which is right next door to the children’s hospital. He shuffles around in the dark and gets dressed, and I am inevitably woken up to where I can’t go back to sleep. For anyone that knows me, know that this is a big deal. I like sleeping in. I am not a morning person. I usually wake up to the tune of toddlers whining, but not before that.
So I lay on my little makeshift bed, waiting. Waiting because the minute he leaves, Reese knows and starts stirring in his crib. I pretend to be asleep/ try to actually sleep until about 8:00am. A quiet knock on the door and someone is here. Usually a nurse to take Reese’s vitals and/or change his diaper (which is probably saturated, and you don’t want to let him sit in it for too long because some of the chemo drugs are excreted in his urine). His sheets probably need to be changed too– this time because of the pee, but if it was last month, it would be because he had vomited. Last month, the chemo upset his stomach. Thankfully this round hasn’t brought us as much nausea. While his sheets are being changed, a nurse wipes him down with the CHG wipes. His body has to be kept somewhat sterile and clean because of his broviac (it’s like a port– where he receives his medicine).
8:30am- Now that Reese is good and angry from being woken up, we both get up. There’s no point in trying to sleep anymore. Because the medical student knocks on the door. He comes into the room and asks me the usual questions– “how’d he sleep? any rashes? how’s he eating/drinking? any nausea? do you have any questions for me?”. To which I reply, “no questions, he’s been doing great. We had an okay night. Typical toddler behavior.” The med student listens to his heart and breathing with the stethoscope and checks him for rashes (which would be a sign of infection or an allergic reaction to the medicine). He says Reese looks great, and says he’ll be back around in a few minutes with the attending physician. I thank him and start to get dressed. If I’m lucky, Reese will wait patiently while I run to the bathroom to pee. He’s attached to an IV pole 95% of the time, so he requires constant supervision.
9:00am- By the time I’ve got my clothes on, I hear another knock. A nurse comes in to take his vitals, do his mouthwash routine (to prevent mouth sores from the chemo), and weigh his diaper. I start to think about breakfast. I can order from the hospital for Reese, someone can bring breakfast to us, or we can eat something we have in the room. This morning, I happen to have a bag of Krispy Kreme mini crullers. Reese and I stuff our faces with donuts, and I try to coerce him into drinking some milk, but since he’s being pumped full of fluids, he’s not thirsty, so he doesn’t want any.
9:45am- By now the doctors and residents have most likely come to see us, and they ask the same questions that the med student asked. My response is the same. They tell us that we should get to go home Saturday. I breathe a sigh of relief because I am so excited to get out of this hospital. The doctors look Reese over and check for rashes. He’s all good, but he’s crying for me to hold him. So I grab him once they’re done, and we take to the hallways. Reese is usually full of energy, and he loves to ride up and down the halls in whatever car/wagon/tractor he sees first– still attached to his IV pole. So I push them both up and down the hall as many times as he wants. I wish that Matt was here to do it, but I know he’s working. Don’t get me wrong, I’m so glad Reese feels well enough to play, but chasing a toddler around a hospital while he’s hooked up to an IV is exhausting. At least he is having fun. Sometimes, a family member comes by (whichever one isn’t watching Cole) and relieves me for a little bit, so I can get out for a few minutes or hours. If I stayed here the whole time, I would lose my mind.
10:00am- The cleaning lady comes in to clean our room, which is amazing because Reese is a messy eater. There are crumbs everywhere. She says hello to Reese, and he waves back and gives her a smile. He likes her because she doesn’t ever try to poke him. We chat for a couple minutes about how Reese is doing and when we’re going to get to go home. Then the IV pump starts beeping. BEEP. BEEP. BEEP. Somehow, one of the lines has gotten tangled, or the medicine is finished running its course. A nurse hears the beeping (or if she doesn’t, then I press the call button) and comes into the room to make some adjustments to the line. The beeping stops. We continue to wander the halls, and I try to convince him that it would be just as fun to watch a movie. Sometimes he concurs, and we get to go back to the room and snuggle. Usually, we watch Moana. But if we watch something else, it’s The Bee Movie, Finding Dory, Minions, or The Secret Life of Pets.
12:00pm- By now it’s lunchtime, and I am starving. Someone (either a nurse or a family member or friend) usually comes and sits with him, so I can run out and get some lunch, which is a much-needed break for me. I go to Chick-Fil-A and order my usual– a chicken sandwich with fries and honey mustard and a sweet tea. Reese also has his usual– an 8-count nugget meal with fries and ketchup and a sweet tea. He used to drink milk, but now he’s only interested in what mommy’s drinking, so sweet tea it is. The dentist is going to hate me. I stop by the house to get the mail and feed the cat. I make sure everything looks normal there and grab anything that I forgot. I so wish I could just stay.
1:30pm- I head back to the hospital and sit in my car in the parking lot for a couple of minutes. Just me and my thoughts. I spend a few minutes on instagram and Facebook and maybe even post something to my instagram story. Then I think about all the thank-you notes I need to write. And all the blog posts I want to write. And about what the next week is going to be like– full of doctor’s appointments and catching up with friends and family. And what Matt’s schedule is supposed to be like. Will we get to go on a date this week? And my oldest. My Colton. What are we going to do this week, and when am I going to get him back? Who is going to watch him the next time we’re admitted? Have we coordinated that yet? I wonder if they’re waiting on me. I should probably go back up there.
2:00pm- I resume my position as Reese’s caretaker. I bring Reese his food, and he eats some of it. Mostly he just wants the sweet tea. We wander around the playroom and wait for Matt to finish up. He could be done early, or he could be done late. You never know.
3:00pm- We have a visitor. A friend comes by to see how everyone is doing, and we catch up for a bit. This does wonders for my sanity. I keep her there until she has to leave. She finally escapes to the outside world, and I thank her for coming by to entertain me and for giving me someone to talk to.
5:00pm- Matt is back, and I am so ready for a break. We figure out dinner and eat it together with Reese in the playroom. I fill him in on what the doctors said today, and he tells me about his day. We chase Reese around the playroom and try to keep him from tangling his lines up in some of the toys. Reese isn’t happy about this, so he cries. I head back to the room to sit for a minute– maybe I’ll shower and catch up on some emails. I need to update my calendar with the new appointments we have scheduled. And I need to figure out what Matt’s schedule is like. Matt seems frustrated with me, so we don’t talk much. I’m frustrated with him for being short with me. I know I’m not very pleasant to be around because I’ve been in the worst mood lately, but it’s not like this is an easy situation. I guess I’m looking for some kind of affirmation. Some kind of acknowledgement that I’m doing a good job. Sometimes, you just need to be told something nice.
8:30pm- Reese starts winding down and getting ready for bed, so we shut the blinds and dim the lights in the hospital room. We make sure he’s got a fresh diaper, and we snuggle for a little bit. The IV pump starts beeping. The chemo is done. The nurse comes in to change the bag and hook up some fluids.
9:00pm- Reese is sound asleep, so I place him in his crib. Then I check up on my blog, catch up on emails, and try to respond to some instagram comments and messages, and maybe check on the Facebook pages that I manage. Matt is on his computer doing notes about his patients and getting ready for the next day. And then he checks his Fan Duel account and sports news, so he can have his best lineup ready for the PGA championship. Fantasy sports, y’all.
10:30pm- Matt comes over to my little makeshift bed and whispers in my ear, “I’m sorry. I love you. I’ve just had a rough day, and I hate this situation.” I totally agree, man. Thank goodness chemo only happens for a week at a time. So not looking forward to intensive chemo at MUSC, where we’ll be admitted for weeks.