Tag: childhood cancer

“What can I do?”

This is almost always the first question.  

Because of Chase’s medical history, it’s not uncommon for people to talk to us when they find out a loved one, a neighbor, or a child in their community, has recently been diagnosed with cancer.  And down to the last person, the first question is almost always the same: “What can I do?” or “How can I help them?”

It’s a ham-strung thing, this nasty piece called cancer. It seems to defy words because it defies our bodies, our medical advances, our treatments…everything.  There is no one right way to handle this type of situation, but I’ve made my list anyway, and at the very least, you’ll learn that we might be a little crazy and and are definitely very broken, but then, you probably knew that already. My heart in these few points is that something in our story might help you.

Without further ado, ten tips for interacting with a newly diagnosed cancer family:

• Don’t feel guilty or awkward if you don’t have something brilliant to say to a newly diagnosed family — I am not aware of any phrase in any language the appropriately sums up the thought: “I’m so sorry your child has a terminal illness and might die”.  I really believe it’s okay to say “I have no good words, but I love you and I’m here.”  Sometimes it’s not about verbally fixing the problem as much as it is just being willing to sit in the trenches with a friend and keep them company while they fight it out.
• The initial stage of diagnosis may not be an appropriate time to share resources with the family — The day after Chase was diagnosed, I almost passed out on the medical imaging floor and had to be taken back to his room in a wheel chair. It was incredibly embarrassing. In the moment of diagnosis, the patient and/or family is just trying to keep breathing. That may not be the right time to try and connect them to groups, friends you know who’ve had cancer, or other resources. So much of the first days are just trying to figure out who they are in relation to the illness. Unless the patient’s life hinges on your words, it’s okay to wait a few weeks.
• The initial stage of diagnosis is not the right time to discuss a family’s treatment decisions — If you truly believe that you have life-changing, life-saving medical information that will assist the person you’re close to, I’d strongly suggest taking it to a close family member (like a grandparent) and if that isn’t an option, lovingly write it out in an email, and then be understanding if you never hear back from the family.  I can almost guarantee that it’s nothing personal – they’re just trying to survive.
  • [Technical note: did you know…? Chase was born with a genetic predisposition for his particular cancer. He was a naturally-born, breast-fed, organic vegetables, green cleaners, low sugar, cloth-diapered baby, and he still got cancer. When he was taken to the hospital, he would have had hours…maybe days without medical intervention. That’s how fast his cancer grew. For our family, there was not a liberty of months available to try alternative treatments or wait and see what unfolded.  And Chase’s story is the same as many others in the childhood cancer community – these cells that hit our littles come fast, strike hard, and seemingly have very little to do with lifestyle choices.] 
• Consider the diagnosed family’s costs — Before Chase was diagnosed, when I thought about the monetary costs associated with cancer, I thought about doctors’ bills.  And that part is true… ha. You should have seen the bills for the brain surgery alone. But what I didn’t consider was the cost of gas for all the back and forth to the hospital, the cost of food – eating out sometimes three times a day for two weeks on end – the cost of parking (almost as much as the brain surgery, I swear…), and dozens of other little (and not so little) accidentals. [Example: Chase became too weak to walk, but was too heavy to carry around the hospital for 10 hours a day and so a special stroller had to be purchased.] And this doesn’t even touch all side effect costs of physical therapy, psychological assistance, hearing aids, walking aids, ongoing medications, evaluations, scans, etc… depending on the child and their road through treatment. The cost list is literally endless.
• The diagnosis family may not have mental energy to make “normal” decisions — Shortly after Chase was diagnosed, we had treatment decisions. Bob and I had to decide terrible things and big things that would make you want to fall down if you heard all of them – and we did it and stayed standing. (Thank you, Jesus) But one day, my mom was making lunch for my other kids and asked if I wanted them to eat chicken nuggets or peanut butter sandwiches and I completely snapped. Totally lost it. Was it a big decision? Not at all. But all –  I mean ALL of my decision-making capability and all my mental energy had gone into those decisions for Chase and staying on my feet. I literally had no capacity to care what the other kids ate for lunch even though I loved them dearly and didn’t want them to starve. I simply didn’t care what food was on their plates.
• Be sensitive to a new diagnosis family, part A — Please consider that your drama in the car pool lane or issue at the grocery store may sound very callous to a parent who hasn’t been out of the hospital in three weeks and wishes that their child could go back to school.
• Be sensitive to a new diagnosis family, part B — Surprisingly, the opposite side of speaking callously about your car pool issues is not speaking about them at all. It’s true, my average day may very well be more difficult than your worst nightmare, but stress is stress and it breaks my heart when people tack on a “it was bad, but not as bad as brain cancer” to the ends of their sentences when I’m around, or drop off speaking when I come into a conversation. Yes, our life is complicated because of pediatric cancer, but it’s not like we have the plague. Don’t feel the need to avoid the subject if the family hasn’t explicitly requested it. There is no brain cancer trump card. There is no hierarchy of bad things. And sometimes, I very much need to be out of my own head and listening to whatever is in yours. Sometimes, listening to those anecdotes and life moments is as “normal” as my day gets and it keeps me from focusing on the cancer. So, don’t be afraid to ask “What do you feel like talking about?” – the answer may surprise you.
• Don’t assume that just because you don’t have cancer you can’t be a wonderful friend to a new diagnosis family — Yes, it’s true that nobody understands like another parent of a pediatric patient, but some of my best connections, encouragements, and life lines during Chase’s cancer treatment came from people who never had a child with cancer. So, don’t discount the role God might be wanting you to play in walking alongside someone.
• Be prepared to shift your idea of community for a newly diagnosed family — I love community and fellowship – going to people’s houses, having them in mine, grabbing coffee, taking kids to parks, to the pool, etc, etc.  But all that stopped when Chase was in treatment. Bob and I were in the hospital most of the time, and what few days we were out, we were exhausted, sleep deprived, and had a child attached to an IV bag who couldn’t be out of our sight or reach, let alone all of his emerging issues of immunity and neurological over-stimulation. Gone were the days of pools and parks, people coming over, or going anywhere. In all honesty, that was one of the most well-meaning, yet painful questions I was frequently asked: “Well, what do you mean you can’t get out? Can’t you get some time to yourself?” No. Even if I could have left Chase’s side (which I couldn’t unless Bob or a medical professional was available to handle his IV bag), I was too sleep-deprived to walk, let alone drive. My point is: be willing to consider a paradigm shift in your community with a cancer family. Maybe instead of taking them out to a restaurant, you bring them dinner, or maybe just dessert and coffee for an hour. Don’t be surprised if you don’t see them at events – it may not be a coping issue, but rather a medical necessity. And maybe there are ways to give the cancer parent “time off” in their own home if they can’t get out.  Sometimes a short visit over coffee is all that’s needed for a quick breather.
• There is no window of time for encouragement to a newly (or not so newly) diagnosed family. We get used to a lot of things and that’s good, really, it is. But that means that there’s often a huge out-pouring of love and caring and gifts and help at the beginning of a diagnosis and then things taper off as the shock wears off.  Most childhood cancer treatment roads require a long, exhausting marathon, not a sprint, so keep that in mind as you connect with your friends. You’re never too late, and quite honestly, checking in down the road can sometimes be more encouraging than at the beginning.

Do you have other questions about how to help a family with a cancer diagnosis? Let me know! We’ll take it together…

…moment by moment.