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. It’s one of the most terrifying things 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. If your child was recently diagnosed, it 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, you may find it useful for ideas on how to 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 different treatments and outcomes. A cancer diagnosis is scary as hell, but don’t immediately jump to the worst conclusions. It will probably take a few weeks to figure out exactly what kind your child has — after the initial scans or blood work point at cancer, biopsies will likely be done to determine the the type. Your doctor likely won’t be able to tell you much about the 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 can be remarkably effective. You won’t know which mutations your child’s tumor has without genetic testing. See if your oncologist thinks it is worthwhile, and 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. They have varying levels of risk that they are willing to take, and you must find someone who matches your views.
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 a rare one. 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 care for yourself, too.
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 too, you will eventually reach a breaking point.
Your natural impulse is to work feverishly to do whatever might make them 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 them fight for years. If you work to failure, you can’t help them as effectively.
When my kid was diagnosed, I bottled it up. I channeled the all the fear into work, and 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 a little 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 — the darkest fears, extreme highs when you get good news, anxiety, depression. That doesn’t mean you’re weak — it means you’re human.
You might well get frustrated at the limitations your child’s illness has placed on your family, and then 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 it 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, they 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.
Either in physical or virtual form, keep notes. Each time you meet with a doctor, have a procedure, or treatment starts/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 providers actually communicate between themselves. It may also be useful for the inevitable arguments with insurance.
Because we had a blended family, we used a cloud document provider that allowed us to share and edit the document. 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 their 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 that 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 are going to sometimes go to 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. Two cell phone chargers — one for you, one for your child, and an e-book reader or other distraction. Basic toiletries. Caffeine mints can substitute for a cup of coffee in the middle of the night. Any medications you might need, and some common over the counter stuff. You don’t want to be hunting for an ibuprofen or cell phone charger at 3:00 AM.
Consider a private social media group for updates to 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 do individual messages. They will immediately get it.
It 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, since the numbers are staggering. It will be ok. You will find a way.
Go 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 co-pays and procedure percentages, it’s likely that you won’t have more medical bills for that year.
What you do need to brace for is the long haul. You are likely going to hit that out of pocket maximum multiple years in a row. You may also have travel, with hotel stays.
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 that the hospital will introduce 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 non-profits 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, too. Your hospital social workers may be able to point you at a good option.
Consider a medical ID bracelet.
Cancer patients typically have complicated medical records. Their medical history and medication list 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 barcode 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 5 year survival rates are based on relatively old studies. New treatments are being developed with increasing speed, and that information may well not be current. They 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. Every cancer patient is different — stay positive, and prepare for the long fight.
Beware the scammers.
There are people who will try to profit off of your desperate desire to help by selling you “cures” that are not proven to have any benefit whatsoever. They will offer a magic bullet, with anecdotes about how effective they are. 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 have family with cancer too, 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 is much more uncertainty involved, and the odds that you’ll need to cancel are much higher than normal, but it’s 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.
This 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 jump to conclusions about outcome, and make sure you get the best medical advice you can. Keep fighting — you don’t 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.
Please note that these observations are not medical advice. I’m not medically trained in any way — they are based on my own experiences over the last several years. I hope that you find them useful.