Day in the life: My daughter has cancer

My daughter, Peyton, is 11 years old. The week she has chemo is the week she’s usually at her dad’s house. Brian and I share 50-50 custody, and switch off week to week, always on a Friday. So he prepares her that week, reminding her that chemo is coming up so that it doesn’t come as a surprise. He gives her melatonin the night before to help her sleep.

Chemo is usually scheduled on Thursday around 10:30, which means an early start to make the two-hour drive down to Children’s Wisconsin in Milwaukee. I meet him at his house so we can all ride together. Presley is usually dressed and ready to go. Peyton is wearing her comfy clothes and laying on the couch covered up in a blanket. She’s definitely not a morning person. She eats a little cereal and manages to brush her teeth but not without putting up at least a little fight. I tell her to try and brush through her hair, but she gives me a look that says, “What’s the point?” I guess she’s right, so instead she just throws on her Brewers baseball cap.

Our drive to the hospital

In the car

Once we start driving, she usually perks up. She always sits in the front seat so she doesn’t get carsick. Brian stays off the highway for most of the drive and takes the scenic route. It’s more peaceful. Driving alongside Lake Winnebago is kind of beautiful.

Peyton plays her “name that song” game with us for most of the ride. Her sister, Presley, sits in the back with me, earbuds pressed firmly into her ears blocking out the world, most likely listening to StarKid musicals.

We stop in Allenton, about 45 minutes away from Milwaukee. It’s time to give Peyton her Ativan to help with the anxiety she gets when they access her port. As the routine goes, we also apply the lidocaine cream to her chest where the port protrudes. This will help numb it so that she will not feel it when they place the needle in for access. Peyton hates taking the Ativan, so we mix it in a Dixie cup with Dr Pepper. After that, we’re back on the road.

A warm welcome

As we pull up to Children’s Wisconsin, we are greeted by the older, friendly valet guy. It’s the same guy every time, and he’s very nice and always happy to see us. We all make our way through the revolving doors to the front desk where we are greeted happily every time. We tell them we are headed to oncology, and they write out all of our badges. They always make sure they talk to Peyton. They ask her if she’s the patient, and when she says yes they tell her how happy they are to have her there. Wish her luck, call her a warrior. She smiles shyly. She’s always been shy about attention.

We make our way up to the MACC Fund Center on the fifth floor. It’s really a beautiful building. There are lights in the ceilings that change colors. And in the waiting room we sit and watch a screen with scenes from nature. It’s all very peaceful.

They call Peyton’s name and we make our way to the scale, always anxious to see if she’s gained weight. Brian and I exchange a nod of victory if she’s gained and sometimes a look of worry if she’s lost. It’s always up and down, though. We’re getting pretty used to that.

In awe of my child

Peyton and Dr. Burke

We sit in a little room and wait. Peyton hangs out on the examining table while Presley and I take the chairs. Brian stands, which is probably best. He doesn’t sit still well when he’s worried. I marvel at how fragile Peyton looks. So tiny. She’s pale. Most likely from a low red blood cell count. She’s taken her hat off by now because she trusts the people here. I look at her balding head and I see bravery. I am in awe of my child. I run through my head all that she has been through and my heart breaks once again for my little girl.

Peyton’s sweet nurse, Jeanette, comes in first. Asks the same routine questions every time. Any pain? How did she tolerate the last chemo? Concerns? Questions? Nope. All’s well. We’re pretty boring, but boring is good when you’re dealing with cancer.

Now it’s the oncology psychologist’s turn to talk to Peyton. She is also incredibly nice and asks Peyton on a more personal level how she is handling this process. We talk a little about Peyton’s anxiety but all in all she’s impressed with Peyton’s strength. So are we.

Next comes in her team of oncologists, Michael Burke, MD, and Sarah Dobrozsi, MD. They ask her questions and Peyton looks at us to answer for her. Sometimes she’ll talk. Depends on her mood. Dr. Dobrozsi is a sweet doctor who makes Peyton feel comfortable, and Dr. Burke is a silly guy who almost always gets her to smile. He likes to tell her stories about his own mishaps, like forgetting to wear pants to work (true story) and jokes with her about bringing him along on her Make-A-Wish trip. They are great people, and I’ve never felt rushed. They take their time with Peyton and make her feel like she is the only patient there.

A routine that works

Getting cozy before port access

Jill, one of the child life specialists, is the next to come in the room. This is our cue that they are ready to access Peyton’s port. Peyton looks at me and says she wants to go home. I tell her that I do, too, but we have to do this to get better. Jill takes out her I Spy books and starts distracting Peyton. We all put on masks. Peyton hugs her stuffed sloth close. Brian hands Peyton a piece of mint gum that she holds up to her nose. This helps block out the smell of the disinfectant they use on her chest. We keep searching for the items in the I Spy book. Very quickly, they push the needle through her skin and into the port. She doesn’t even feel it because of the numbing cream. They tape down the needle to assure it doesn’t move. I hand Peyton an orange-flavored Airheads candy. She promptly puts it in her mouth so that she does not taste it when they flush the line to her port.

We have come a long way to figure out this routine that works for her. Gone are the days of physically holding her down as she tries to push the nurses’ hands away from her. No more looking down at my daughter as she begs and pleads for me to make them stop. We’ve come a long way.

Her chemotherapy

Peyton receiving chemotherapy

She is praised by the nurses and us for doing such an awesome job. It’s time to go to the Northwestern Mutual Day Hospital to start chemotherapy. It’s just a short walk across the hall. There’s an art center, TVs and some of the most wonderful nurses you’ll ever meet. As she gets situated in her bed the nurses cover her up with not one, but two heated blankets. They know that this is her preference. For the next four to five hours Peyton is fed fluids, anti-nausea medication, and the four drugs that make up her chemotherapy.

Peyton hates the smell of the room. She hates the beeping the machine makes every time the bag is done dripping. But we cherish this time together as a family. We play games, we do art projects, and we look at all of the amazing pictures and messages from her supporters on her Facebook page.

Surprisingly, the time goes by quickly. Before they give her the last chemo drug, we give her some more Ativan to help with the anxiety of de-accessing her port. It also helps with nausea for the ride home. By this point she is tired and not feeling very well. Sometimes she will flat-out refuse to take the medicine. It takes some persuading, but she eventually takes it every time. Again, we tell her how proud we are of her.

Peyton is a trouper

Peyton and her mom

We hold her hand as they take off the tape and pull out the needle. Sometimes she feels it. It makes her woozy, but she’s relieved it’s over. By this time, they have a wheelchair waiting for her. They know that she likes to ride it on the way back downstairs. Sometimes she’s not feeling well and just feels too weak to walk. Other times I think she just really likes to ride in a wheelchair! The nurses all wave goodbye as we wheel her out. We ride down to the first floor in the elevator, and no matter how lousy Peyton is feeling she almost always makes a stop at the gift shop where she is allowed to pick out one thing. It’s usually a stuffed animal.

Peyton and her dad

We wait for the valet guy to drive Brian’s car around. We made it! Peyton did it! Another chemotherapy behind us, and one more closer to being cancer free. Peyton’s mood varies on the way home. Sometime she’s exhausted and sleeps the whole way. Other times she’s talkative, excited to get home. Sometime she’s moody. But we take it all in stride and just let her be whatever she wants to be. The kid has been through enough.

This is usually Brian’s night with the girls, because I get them back on Friday. There have been times that Brian has to work early on Friday morning and I get to take them home to my house instead. I love those nights. As a mom, I want to be with Peyton during this time. But on the nights she stays with her dad after chemo, I respect that it is his night and I trust that she’s in good hands with her dad. She usually spends the rest of the evening lying on the couch, and goes to sleep early. She tolerates chemotherapy well and has never gotten so sick that she’s thrown up from it, but she’s usually tired for the next couple of days.

We are all warriors

Beads of Courage

I drive home from Brian’s house. I walk into my empty house and sit down in the living room. I think about the day, and I realize how completely exhausted I am. The pain of watching your child go through this, the heartache of seeing so many other sick children in one place, the putting up a strong front for your child when you don’t always feel so strong. It’s exhausting and I allow myself to break down.

I cry for her, for all the children that have to endure this, I cry for Presley and everybody who cares about Peyton, and I even cry for myself a little bit.

This release allows me to be the best that I can and to fight the hardest that I know how. And I will continue to fight. We are all warriors together to beat the cancer that has robbed my child of so much this past year. Two more treatments left. We’ve got this.