Eric is a really beautiful child, and I say that not because I adore his mother, but because he’s really beautiful, with an ear-to-ear smile, dimples, sparkling eyes, and a thick head of hair that stops just above his eyebrows. His parents married when they were both in their 40s, so he’s a real miracle baby who is surrounded in a total cocoon of love from his extended family and his parents’ friends.
He just turned four years old, and he’ll be in the hospital for the next month, in treatment for over two years, and watched for the next 25 years. Eric was just diagnosed with lymphoblastic lymphoma.
When Eric’s mother spotted the little lump on his collar bone, she jumped right on the situation, trusting her instincts. She had him in the doctor’s office that day, and before she could blink, the family was on a 48-hour odyssey that ended with him in the emergency room. That was two weeks ago. Neither he nor his parents will be returning home for a few more weeks, and after that the protocol for treatment will be rigorous and taxing for all.
Eric is in one of the world’s best children’s hospitals, and the staff are making it as pleasant as they can. Yet childhood cancer is what it is. There’s no sugar-coating the needle sticks that make him scream “Mommy, Mommy, help me!,” or the medicines that are squeezed into his mouth, or the PIC line in his arm that makes it hard for him to roll over. Or the blood clot that turned that arm blue. Or the dramatic decline in his white cell levels that has caused him to regress and become whiney.
But then again, Eric is lucky. He’s young, his cancer is very curable (despite the fact that the scans show places it is trying to get a foothold throughout Eric’s little body) his parents are devoted and attentive, and maybe he won’t remember the trauma when he’s older. Maybe . . . . Eric’s family is fortunate too: he’ll survive this, and so will they, even though life will never be the same. Yet the stress is already creating a new normal for them, and they know it. They’re learning that:
- It’s not enough to trust the medical team overall, especially when your instincts tell you that something isn’t right. Don’t assume that they’ll catch every change in symptoms or behavior. When something looks like it’s not going well, or a medical person’s actions are causing distress to your child, don’t brush it off. Trust your instincts.
- Asking questions and pushing back in the interest of keeping your child more comfortable takes courage and tact. No, you’re not medically trained, but you’re a parent whose goals are simple: (1) beat back the cancer, and (2) keep my child comfortable. It’s that simple. So anything that a medical team member does that seems to be working against one or the other of those goals deserves polite questioning. You don’t have to be an attacking Momma Bear, but rather need to be a caring partner with the medical professionals. Find ways to ask questions, problem-solve, and build a mutually supportive relationship.
- The cancer isn’t there because of anything you did, or failed to do. You’ll tend to overwhelm yourself with questions about how this could happen, because a parent’s “job” is to kiss the booboo and make it go away. As a result, you’ll question yourself:
– Should I have seen something wasn’t right sooner?
– How can I deal with his fear of needles hurting, when I know he’ll have to have multiple shots each day for at least the next two years? (They haven’t learned about the topical anesthetics or distraction strategies that might reduce their son’s needle-phobia, but they will.)
– Will he have any lasting side effects (like heart problems or liver or kidney issues) from all of the chemotherapy he’s getting now when he gets to be 30, 40 or 50?
– As a parent what do you do to help him overcome his fear of needles? Do you tell your child what is coming honestly and then see the anxiety build? Or do you not tell them? Do it while he’s sleeping? If so, doesn’t that create a trust issue that makes him afraid to fall asleep for fear of getting poked? In the daytime that is not an option, so how do we distract him–does he just tough it out and cry, or are there ways of helping him
- Sometimes you just don’t have the band-width to do everything yourself, which is why journaling on CaringBridge or laying out your support needs on LotsaHelpingHands is doing your friends and family a favor. People really mean it when they ask how they can help, but they don’t realize that that question itself isn’t helping, because it’s making you have to answer yet another question. So share information (so you don’t have to keep repeating yourself) and pass around the links to your Lotsahelpinghands site; if they don’t want to help, they won’t. But you’ll be surprised at how many people jump into the fray to help, and be happy doing it.
- There’s no such thing as “doing it right” when you’re caring for your hospitalized child and at the same time trying to interact with family and friends who aren’t walking in your shoes. Journaling on a site like CaringBridge can help you sort out what happened today and what you’ve learned, and to capture those insights for your own benefit. It also greatly streamlines the demands on your time, so you don’t have to be answering the phone at awkward moments, or feeling obligated to get back to people, or feel further overwhelmed by offers of help that are coming too fast and furious at first for you to get your head around.
- Seeing your child’s hair start to fall out will feel traumatic. This isn’t the remembrance of his first haircut, where you saved a lock of his hair to remember with joy years from now. This is a visible sign that treatment is hurting him (just in case you didn’t yet figure that out). Eric’s Dad got a buzz cut the day that Eric’s hair was cut off, and he let Eric do it to his Dad. Now that’s something a four-year-old can laugh about.
- There won’t be time to grieve for your pre-cancer life, nor will there be the emotional strength. So stay in the here and now, do the best you can, and find a few minutes for yourself every day, even if it’s only a few minutes, for meditation, or walking around the block, or asking a visiting friend about his or her life to give you a little much-needed relief from your own current and understandable cancer obsession.
Eric and his parents are only starting down a long path. These aren’t the only issues they’ll face along the way, but hopefully they now have a little more reassurance that they’ll get through this with more courage, self-confidence, and resilience than they realized they had when they first landed in the emergency department.
Deborah J. Cornwall is an experienced advocate on behalf of cancer patients and their families. She is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out, a new book based on interviews with 86 cancer caregivers and dozens of patients and survivors. For more information or to purchase the book, go to www.thingsiwishidknown.com.