Working Together With Your Child's pLGG Care Team

Bring a List of Questions

As you learn more about pLGG and its treatment, write down any questions that pop up and bring that list with you to your appointments. Many families find that having a dedicated binder or notebook for your pLGG journey helps to keep information all together and easy to find when you want to reference it later. 

"We expect families to only remember 10%-30% of what we tell them the first time, so we really do want them to come back with questions or things that weren't clear," Kilburn says.

Before you leave, pull out your list, read through it, and be sure everything was addressed. And keep it running – add to the same list as you go so all your questions are in one place.

Take Notes

The notebook you use to write down your questions is a good place to record what you learn during a visit, too – or better yet, a good place to have someone else take notes so you can be fully present as you speak with your team. Some hospitals provide a note taker who can record and summarize information for you. You can also ask the doctor for help.

"Don't be afraid to ask the doctor to write stuff down for you," says Jean Mulcahy Levy, MD, a pediatric hematologist-oncologist at the Morgan Adams Foundation Pediatric Brain Tumor Research Program at Children's Hospital Colorado. "If we're using big words, you can say, 'Could you please write that down for me?' Especially if you're going to want to look it up later."

Another option is to ask if you can record the audio of your visits using your phone or other recorder so you can listen back to exactly what was said later on. If you and your doctor speak different languages, ask for a medical interpreter during your visit so you can get the most from your time with your team. 

Speak Up

Your child's medical team wants to be sure your questions are answered well, so don't stay quiet if you're not getting a concept or feel confused or concerned about something your doctor is saying.

"We want you to understand, even if it's on a simple level, what's going on," says Levy, who’s also an associate professor at the University of Colorado Anschutz. "You don't have to understand all the science behind everything, or all the big words, but we want to be sure we're explaining things in a way that makes sense to you."

Kilburn also encourages families to ask about opportunities like clinical trials, which play an important role in pLGG and pediatric cancers as a whole. 

Kilburn says: "The way we've gotten to have such great and successful therapies currently is because of children five, 10, 20 years ago who participated in these trials and helped us develop better therapy." 

Know How to Contact the Team

You spend way more time away from your child's medical team than you do face-to-face with them. If something comes up – whether it's a new or worsening symptom or a question that can't wait for a visit – make sure you know the ways that you can get in touch.

Many hospitals use online portals where you can access your child's medical and appointment information, and these usually have a message function for sending non-emergency questions or concerns any time of day. 

"Those are great because they go to the whole team, meaning that if your primary doctor is not available, someone is going to be available to answer your questions in a relatively short period of time," Levy says.

Most places will also have nurse coordinators or primary nurses that have direct phone numbers that families can call, she adds.

 "I always encourage my families to send questions that need an answer in one to two days electronically, but if it's a question you really feel needs to be answered more urgently, to call directly into the clinic, especially at the beginning when you're still learning and you don't know," Levy says. "We're there to help you figure out what's normal and what's not. Eventually, a lot of families get to a point where they're able to identify those things on their own, but you should never be expected to do it alone in the beginning."

Get a Second Opinion if You Want It

Many families worry that by asking for a second opinion, their doctor may feel that their knowledge or status is being questioned. But Levy says that her goal – and the goal of the doctors she works with – is that you're comfortable with your child's treatment plan. 

"We all understand in the pediatric brain tumor world, specifically because it's a very small world, that asking for second opinions doesn't mean someone doesn't like me or trust me, it just means that they want all the big brains to be a part of this discussion," she says. "And we're OK with that."

Kilburn agrees, adding that it's helpful for her to hear a different perspective on the options she's presenting. 

"I don't think any of us take that personally or feel offended or feel distrusted by a family wanting to pursue a second opinion," she says. "There are some subtle differences in what physicians might recommend in pLGG, particularly, because there's sometimes more than one treatment option that might make sense."

Be Open and Honest

Treating your child's cancer will be most effective if the team knows as much as possible about their medical history, any medications they're taking, behaviors or symptoms you're noticing, and anything else that could be helpful. 

"Never assume that something isn't big enough to talk to us about," Levy says. "We can't help you if we don't know."

It's especially important to let your team know if you're trying – or thinking of trying – complementary medicines or supplements with your child. 

"We need to be sure that what you're taking is not going to cause increased side effects or – in some cases – make the medicine we're trying to use on your child not work," Levy says. 

When you're transparent with your team, it allows them to pull out all the tips and tricks to help your child – and family – feel as best as they can. 

"Providing information about your family – the unique aspects of your child that might help inform decisions – is critical," Kilburn says. "The reason we're treating these tumors is because we want these children to be thriving and living great, healthy, long lives."