Talking with grandkids and other curious people about Optune®
By Andrea, wife and Optune Caregiver Ambassador, and Darrell, husband and Optune Patient Ambassador • 6 min read
When we were asked to write this post about Optune and grandkids, we jumped at the chance. We have two beautiful grandchildren, and Darrell feels rich every day of his life. Also, what self-respecting grandparents would miss an opportunity to share photos of the grandkids?
G'Pops = Optune
It seems like Optune has always been part of our granddaughters' lives. In their experience, G'Pops (Darrell's moniker with the grandkids) just comes attached to a backpack and a hat. Optune is all our grandbabies have ever known. The few photos we just happened to find (ha ha!), posted below, show the girls (first Nova and then little sister Ivy) interacting with Optune throughout their lives. They have always viewed equipment and hats as nothing more than some of the interesting benefits of hanging out with G'Pops.
Because Optune is typical for them, and because they are still toddlers, our granddaughters haven't asked questions about Optune. However, we are surrogate grandparents to the children in our friends' lives, and we've enjoyed answering their questions. Here are five tips we've developed through our own experience in talking about Optune with grandkids.
Tips for talking with grandkids and other curious people about Optune
1. Know your comfort zone.
We have the same rule with our grandkids that we had in parenting our children: No topic is off limits for conversation. That applies to Optune and GBM as well. There is no question that Darrell wouldn't feel comfortable addressing from his own perspective. However, that might not be right for everyone. It's good to consider the topics or limits that you feel comfortable with and to prepare a response in case a child strays outside that territory in advance. What would you say? It could be something like, “I'm not ready to talk about that yet.”
2. Be honest and give kids just enough information.
One afternoon, Zoey (three years old) told Darrell, “You have a boo-boo on your head.” Zoey's five-year old sister Lilly replied, “He has brain cancer! Duh!” Kids. Gotta love how direct they are. Darrell confirmed Lilly's conclusion and added just a little information about Optune. “Yes, I do have brain cancer,” and, showing them his arrays, “This [Optune] device helps me. It fights the cancer and I can keep enjoying my time with you.”
Zoey and Lilly accepted his answer as truthful and helpful, and the conversation moved on. They got everything they needed at the time, and they felt secure that the grown-ups in the world had a good plan for dealing with a hard thing.
3. Let the kids lead.
We gently find out kids' ideas and knowledge to shape our conversations. Kids, we've found, are just like adults. They ask questions based on their own life experiences. The answers we give depend on the audience and the context. The older and more interested the kids are, the more information we give. Darrell always appreciates follow-up questions as well.
The questions kids (and adults) ask depend on the personal connections they draw. For instance, when adults ask about Optune, they sometimes ask if it's like when one of their friends was monitored for brain activity. Others ask if it controls seizures, and some even use humor. One fellow asked Darrell, “Can you pick up the ballgame with that equipment?” What a great opener that line was!
We always make it a point to find out kids' thoughts and ideas when we talk to them about the device. Even young kids know a thing or two about electricity. Knowing that helps us anticipate questions like, “Does it hurt?” or “Does it shock you?”
Older kids tend to know a little bit more, specifically about cells and how they live and reproduce. With this, Darrell can connect to what they have learned in science class: “Optune may slow or stop cancer cells from dividing.”
4. Everyone loves props and hands-on experiences.
Many humans learn better when we can get our hands on things. Touching Optune components seems to make the device feel familiar and normal to people instead of scary and strange. He never insists, but Darrell invites curious kids to touch the arrays on his head as he explains that the device does not hurt or shock him. “It just feels warm,” he tells them.
For the kids who ask, “Is it heavy?” Darrell loves to hand them his backpack so they can judge for themselves. It's much more convincing than responding, “It weighs three pounds,” right?
Given the questions we receive, one thing that would be helpful for conversations with curious kids would be a tiny, prop-sized array. When we trained our friends Christine and Lennie to change arrays, Lennie exclaimed happily, “Stickers!” We didn't know until then that Lennie is a sticker aficionado! Wouldn't it be great if a child could peel off the array's cover to touch the stickiness of the hydrogel and see the disks? Our neuro-oncologist did that for us when Darrell was considering Optune, and we still appreciate the hands-on learning!
5. Invite kids to join Team Optune.
Speaking of hands-on learning, we familiarized our grandkids with the equipment, like the batteries and the charging station early. At two-and-a-half, Nova has interest in checking the battery levels by pushing a button on the battery. She also likes to push down on the batteries in the charging station to ensure that they are firmly seated. She knows to watch the charging lights to ensure that her efforts were successful.
Just as we do with the adults in our lives, we invite kids—as appropriate with their age, interest, and comfort levels—to be part of the Optune team by changing Darrell's batteries. Of course, some kids (and frankly some adults) are uncomfortable with cancer and its treatment. For kids who are uneasy, we don't push it. We just let them know that Optune is a good thing in our lives, and we are happy to talk about it, and are open to any questions they might have. We have found that the kids in our lives almost always find it empowering to care for a loved one and be a part of a team working together to fight cancer.
Grandparents and grandkids: We're in this together!
Important Safety Information
What is Optune® approved to treat?
Optune is a wearable, portable, FDA-approved device indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.
Newly diagnosed GBM
If you have newly diagnosed GBM, Optune is used together with a chemotherapy called temozolomide (TMZ) if:
- Your cancer is confirmed by your healthcare professional AND
- You have had surgery to remove as much of the tumor as possible
If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:
- You have tried surgery and radiation and they did not work or are no longer working AND
- You have tried chemotherapy and your GBM has been confirmed by your healthcare professional
Who should not use Optune?
Optune is not for everyone. Talk to your doctor if you have:
- An implanted medical device (programmable shunt), skull defect (missing bone with no replacement), or bullet fragment. Optune has not been tested in people with implanted electronic devices, which may cause the devices not to work properly, and Optune has not been tested in people with skull defects or bullet fragments, which may cause Optune not to work properly
- A known sensitivity to conductive hydrogels (the gel on the arrays placed on the scalp like the ones used on EKGs). When Optune comes into contact with the skin, it may cause more redness and itching or may rarely cause a life-threatening allergic reaction
Do not use Optune if you are pregnant or are planning to become pregnant. It is not known if Optune is safe or effective during pregnancy.
What should I know before using Optune?
Optune should only be used after receiving training from qualified personnel, such as your doctor, a nurse, or other medical staff who have completed a training course given by Novocure®, the maker of Optune.
- Do not use any parts that did not come with the Optune Treatment Kit sent to you by Novocure or given to you by your doctor
- Do not get the device or transducer arrays wet
- If you have an underlying serious skin condition on the scalp, discuss with your doctor whether this may prevent or temporarily interfere with Optune treatment
What are the possible side effects of Optune?
The most common side effects of Optune when used together with chemotherapy (temozolomide, or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, scalp irritation from the device, headache, seizure, and depression. The most common side effects when using Optune alone were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers. Talk to your doctor if you have any of these side effects or questions.
Please click here for the Optune Instructions for Use (IFU) for complete information regarding the device’s indications, contraindications, warnings, and precautions.
On this site, patient and healthcare professional videos as well as all images labeled as Optune users, caregivers, or healthcare professionals depict actual patients, caregivers, and healthcare professionals. All other depictions of patients and caregivers are actor portrayals. Patient images reflect the health status of the patients at the time each photo was taken.