6.14 - Charlie & “Dots” … Explaining Cancer

Charlie has been in school since Dottie was born. For the last 6 months, he’s had three mornings every week of distraction, of being away from home, of not having to experience everything that goes on with Dottie. But now it’s summer break. So he’s home when the home health nurse comes to draw labs, he’s home when we have to make plans for him to be somewhere else for Dottie’s doctor’s appointments, he’s home when Mama and Dada wake up completely exhausted after a hard night with Dottie. He’s experiencing more of it with us. And it’s not easy. 

For 6 months we’ve watched as Charlie’s love for Dottie has grown. I truly believe that there is not anything he would not do for her. (Other than change or even touch dirty diapers. He draws the line there.) He does whatever he can to help - from picking out her outfits and matching hair bows, to getting diapers and wipes for us, to setting her meds out of the mini fridge to warm up, to rinsing bottle parts that need to be washed and putting them back together when they’re clean, and the list goes on. He gets upset if he can’t help. He also tells Dottie multiple times each day that he loves her. He has his own nickname for her that no one else is allowed to use. “Dots”.

Charlie has known from the beginning that Dottie is sick. He’s known about her cleft lip and palate. He’s known that she has seizures and spasms that she needs to take medicine for. He’s known that she gets injections every morning and night. He’s known that she has something in her nose that is not supposed to be there. But how do you explain cancer to a four year old? We didn’t know. So we waited. We waited to have more information. We waited until we felt comfortable that we had the right words and we waited until we knew exactly how much we wanted to tell him. 

Dottie’s nasal tumor had been growing rapidly. It was getting closer and closer to the end of her nose and we fully expected that it would be outside of it soon. So we made the decision to start her on an oral chemotherapy drug, hopeful that it would slow the growth and maybe even shrink the tumor. We did not make this decision lightly, knowing that this medication could potentially cause other issues with the many health concerns that Dottie has. So we told Charlie. Now that he’s home every day and experiencing more with us, we made the decision to finally explain in more detail what is going on. 

We fully expected this conversation to be incredibly difficult. We had definitely built it up in our heads, prepared for the worst. But Charlie handled it incredibly well. He listened and stayed engaged as we read through the book that the Child Life Specialist had prepared for us, and he understood as much as a four year old can. We explained what cancer is, and how the doctors found it in Dottie. We explained that it will be something that we’ll watch closely with the help of her doctors. We explained that there will be more appointments and possibly even some hospital stays - that Dottie could get sicker and maybe even need another surgery. We DID NOT tell him what this cancer could ultimately do. We only talked about what we are going to do. That we’re going to keep watching out for Dottie, caring for her, loving her, and praying that all of her medicines do what they’re supposed to do. 

The way I exhaled after this conversation cannot be explained. I am so grateful for how well it went and for the subsequent ability to speak more openly around Charlie about everything going on with Dottie. Having told him means that we all get to celebrate together that the oral chemotherapy is working. We get to celebrate together that Dottie’s nasal tumor is shrinking. “Dots, the medicine is working! That thing in your nose is getting smaller!”, he told her. And we are so thankful. 

I read recently, “Nobody talks about what happens AFTER the NICU. When your baby comes home ... but so do the specialists, therapies, hospital visits, and trauma. People think discharge means ‘everything is okay now.’ Sometimes it just means you continue surviving somewhere else.” That could not be more true for us. And although it is made all the more challenging that we have Charlie to care for as well, I’m reminded daily that he was always meant to be on this journey with us. The Lord has been preparing his heart just as much as He was preparing ours. The love that Charlie has for his “Dots” helps bring us joy on some of our worst days. This boy of ours was always meant to be her big brother. 

I realized that I never really shared an update after we received the detailed read of Dottie’s last MRI.

So what now? We will continue the oral chemotherapy. With how quickly the nasal tumor has already responded and begun receding, we are hopeful that this will continue and surgery will not be required. We are also hopeful that if the mass in Dottie’s brain is a tumor, that we will see some response to the oral chemotherapy there as well. But for now we are choosing to agree with those on the Tumor Board who do not believe this is a tumor. We will get a repeat MRI, likely around the end of July. 

Thank you for your continued prayers!