Your Child Has Been Diagnosed With Cancer. Now What?

What you need to know about a time you wish wasn’t happening

Credit: Mireya Acierto/Getty Images

Three years ago, at the age of 15, my daughter Kate was diagnosed with a rare cancer of the neuroendocrine system, which had started in her pancreas and spread to her liver. Cancer is, of course, one of the most terrifying words a parent can hear.

I’d like to share some of our experiences with you and pass on some of the things we’ve learned — a combination of observations and suggestions. If your child was recently diagnosed, hopefully this will give you an idea of what to expect and perhaps save you some much-needed energy. If a friend or family member is going through something similar, maybe some ideas here can help.

There are many kinds of cancer, and many can be very effectively treated.

Cancer is not one disease — it is a category with hundreds of specific illnesses. They are all a bit different, with varied treatments and outcomes. A cancer diagnosis is scary as hell, but it’s important not to immediately jump to the worst conclusions. It will probably take a few weeks to figure out exactly what kind of cancer your child has. After the initial scans or blood work, biopsies will likely be performed to determine the type. Your doctor may not be able to tell you much about specific treatment options until after that.

Do not assume the worst. Some cancers can be kept at bay for a very, very long time with modern targeted therapies. Some can even be cured.

Ask about genetic testing of the tumor.

Cancer can be caused by mutations to a large number of different genes. Some of those mutations can be targeted by specific treatments that are remarkably effective. You won’t know which mutations your child’s tumor has without genetic testing. See if your oncologist thinks it’s worthwhile. If they say no, make sure they have a good reason.

Not all oncologists can effectively treat all kinds of cancer.

If the cancer your child has been diagnosed with is rare, ask the physicians making the diagnosis if a specialist would be appropriate. Ask them politely if they feel they are the best qualified to treat your child. The good ones won’t be offended in the least.

It may take some hunting to find the doctor who has the best combination of attitude, skills, and experience to treat your child. Doctors vary in the level of risk they are willing to take, and you must find someone whose views match yours.

An early specialist we spoke to was harsh, negative, and unwilling to take even the slightest risk to aggressively try to cure my child. She wanted to treat Kate like she’d treat a 68-year-old. We fired her and found someone who better fit our expectations.

You may have to travel, especially if the cancer is rare. Our oncologist is four hours away but coordinates with a local hospital for supportive care. He and his team are amazing.

While you take care of your child, you must also care for yourself.

You’re a parent, and your child is in danger. You’d do anything to protect them and would gladly lay down your life to save them. You can’t, though; it’s not that kind of fight. This is a grind. If you don’t take care of yourself, you will eventually reach a breaking point.

Your natural impulse is to work feverishly to do whatever might make your child more relaxed and comfortable. You need to do that, of course, but make sure to take at least a little time to do the things that help you relax. Get at least a bit of exercise, read, spend a little time with your favorite hobby. At first, you’ll feel guilty when you do — after all, there’s work to be done! Fight that feeling. You are staying strong — you are doing what you need to do to help your child fight for years. If you run yourself down, you can’t help them as effectively.

When my kid was diagnosed, I bottled up all of my emotion about it. I channeled the fear into work and into researching doctors and treatment options. I did a terrible job of caring for myself physically and mentally. The anxiety cropped up in weird ways — I developed unreasonable fears of failure at work, selling our house, and other things I actually had at least some control over. Don’t do that. As soon as you are able, start a regular routine to keep yourself sane. Your child and the rest of your family depend on you.

Emotionally, you are in for a wild ride. You are not alone. It doesn’t mean you are weak.

You’re likely going to experience a serious roller coaster of emotions — cycling through dark fears, extreme highs when you get good news, anxiety, and depression. That doesn’t mean you’re weak — it means you’re human.

You might get frustrated at the limitations your child’s illness has placed on your family, and then you’ll immediately feel like a terrible person. You aren’t. You are allowed to be frustrated and sad and angry.

Consider talking to a counselor before you feel like you need it. You may well handle these new pressures fine in the short term, but again — this is a long haul. You need to prepare for that. Support groups are also an excellent outlet. If you are a church member, that might be a wonderful source of support.

All the terrible stress may trigger depression or anxiety attacks for the first time in your life. You are NOT weak. Get up, get help, and be there for your kid. You can do it. You don’t need to go it alone, and you shouldn’t try.

“You’re a parent, and your child is in danger. You would gladly lay down your life to save them. You can’t, though; it’s not that kind of fight.”

Keep notes.

Either in physical or virtual form — keep notes. Each time you meet with a doctor, have a procedure, or a treatment starts or stops, enter a short summary with the date. It will be invaluable later when talking to providers — you may be surprised at how little different doctors actually communicate with one another. Notes may also prove useful for the inevitable arguments you’re likely to have with insurance companies.

Because we are a blended family, we used a cloud document provider that allowed us to share and edit. It worked great.

Lean on your friends and family.

When your friends and family hear that your child is ill, many of them will offer to help in any way they can. They mean it, and at least at first, they have absolutely no idea what sort of help you might need.

You need to ask them. You may have been fiercely independent before, feeling as if asking for help made you weak. Things are different now. You need help.

Be specific. Need someone to mow your grass? Deliver a meal? Drop your other kid at school? Ask them. You’ll be surprised at how many will be thrilled to help you. They really do want to — they just don’t know how.

Sometimes, someone trying to comfort you will inadvertently hurt you.

When people become aware that your kid is seriously sick, they feel the need to say something comforting. Society practically demands it. If they don’t have experience with cancer, they will cast about and find something they hope conveys the right level of concern and hope. Some of them are probably going to make you seriously angry. Expect it, and be ready to roll with it.

My top trigger phrase was “everything happens for a reason.” That never failed to make my blood boil. You aren’t allowed to hit them. Don’t yell at them. It’s not their fault. They just don’t know what to say. They are trying. Walk away and breathe.

Pack a go-bag and keep it ready.

It is likely that you will depart for the hospital on short notice and stay there for several days. It is extremely helpful to have a bag packed with a change of clothes for you and your child, along with some other essentials. I’d recommend two cellphone chargers — one for you, one for your child, an e-book reader or other distraction, basic toiletries, and any medications you might need, including some common over-the-counter stuff. Caffeine mints can substitute for a cup of coffee in the middle of the night.

Consider a private social media group for updating friends and family.

Very soon, sending texts to update friends and family will get taxing. Be efficient. A Facebook group that interested friends and family can subscribe to allows you to post in one place and broadcast important status information with little effort. Explain to friends that it’s overwhelming to send individual messages. They will immediately get it.

Prepare for and find help with expenses.

The question of money will hit you a few days to a week after you get the news, when the first shock wears off. How the hell are you going to pay for this?

You are not alone in this fear — everyone who deals with cancer finds it terrifying, because the numbers are staggering. It will be okay. You will find a way.

Find the insurance policy that your child is on. Find the section about out-of-pocket maximums. That’s the amount you are going to need to pay per year. It will likely be a pretty large amount of money, but not catastrophic. Once you pay that in copays and procedure percentages, it’s likely that you won’t have more medical bills that year.

What you do need to brace for is the long haul. You’re likely going to hit that out-of-pocket maximum multiple years in a row. You may also incur travel costs.

Once you know what kind of cancer your child has, look for organizations that support people with that kind of cancer. They may have grants that can help if you need them. Some children’s hospitals reduce fees for those in need. Talk to the social workers the hospital introduces you to. If you need to travel, ask if the hospital has a service to help you find hotels at a reduced rate. Many do.

Friends may offer to raise money to help on the internet. Ask them to first look to see if there are any established nonprofits that can help with fundraising, since the donations might then be tax deductible for the giver. For-profit fundraising internet sites take a rather substantial portion of the gifts. Hospital social workers may be able to point you toward some good options.

Consider a medical ID bracelet.

Cancer patients typically have complicated medical records. Their medical histories and medication lists can be quite long. Medical ID bracelets are an excellent way to convey critical information to first responders in the event that your child is in an accident or otherwise unable to communicate. A bar code on the bracelet points at detailed medical records and physician contact information. They are quite inexpensive.

Research treatment options, but don’t dig too deep on outcomes.

Be aware that most of what you read about five-year survival rates is based on relatively old studies. New treatments are being developed with increasing speed. These projected rates are also averages over fairly large groups, so they don’t say a whole lot about the odds of an individual. Many of those studies did not involve children, and, of course, every cancer patient is different.

Beware the scammers.

There are people who will try to profit off your desperate desire to help your child by selling you “cures” that are not proven to have any benefit whatsoever. They will claim to have a magic bullet and share anecdotes about how effective it is. These people, in my opinion, are predators who seek you out in your time of gravest need and try to profit from you. They may tell you that the medical and scientific establishment are hiding the cure. That isn’t true — thousands of people working in those industries also have family with cancer, and they would never allow such a secret to be kept. The truth is that curing cancer is really, really hard, simply because there are so many kinds.

Keep living. Make memories.

It is very easy to get swept up in the tidal wave of events surrounding an illness as serious as cancer. It takes planning and effort, but you and your family can probably still travel and do other activities you enjoy. There will be much more uncertainty involved, and the odds that you’ll need to cancel are much higher than they once were, but shifting gears is usually possible. Your doctors will work with you. They understand the importance of staying mentally healthy, and time on vacation or spent with family can help a great deal.

Closing thoughts.

Cancer is hard, and it’s completely unfair. Take care of yourself and ask for whatever help you need. Those around you very much want to help and will jump at the chance if you let them. Don’t leap to conclusions about outcome, and make sure you get the best medical advice you can. Keep fighting — you never know what research is in the works that can help your child. The science is advancing every day, and there are tens of thousands of people fighting beside you. Lean on them, and stay strong.