“Before I knew you, I thought brave was not being afraid. You’ve taught me that bravery is being terrified and doing it anyway.” — Laurell K. Hamilton, Blood Noir
That’s it. Exactly. Since E was diagnosed with Crohn’s Disease last June, the near-constant din of worry and fear has stayed with me at varying volumes and intensity. Right now, it is my music.
Last week, E’s doctor informed me that E’s latest test results revealed lower-than-optimal drug levels. I was told to be on alert for any renewed symptoms and to report them immediately, at which time the doctor would likely add a medication. Despite my frequent inquiries about how she’s feeling, E didn’t let on that the pain has returned. Until Monday night, when she spilled the beans that she’s been in pain off and on for the past week, and increasingly so.
“Why didn’t you tell me until now?” I asked (calmly, because I am well aware of the contagion of moods, and the last thing I want to do is to raise her anxiety level).
“I wanted to make sure that’s what it was,” E said (as in, not just a passing thing).
I get it. (Though I wish she’d told me sooner. We’ll have that conversation another day, when she’s well enough to hear it.) She doesn’t want to take more drugs. I don’t blame her. I’ve been pushing the doctors to get her off whatever we could as soon as we could, and it’s worked pretty well since the summer, where her flare necessitated multiple meds and, as a last resort, a four-week course of steroids. Her admission must have felt like a failure; like we’re taking backwards steps. Are we too late to stop it from a return to last spring’s debilitating symptoms? Or will she start feeling better soon? In my research and conversations about Crohn’s, the stories run the gamut. There is no one typical path. So we don’t know which road we’ll be on, which makes uncertainty our reality.
Uncertainty is hard for everyone, especially a planner like me. But when you just don’t know what your tomorrow is, it reminds you to celebrate today. Today, E is home. It’s not a great day–she’s not feeling well, nauseated and exhausted. But here’s the flip side: I get to spend the day with her. I get to be the one who tells her it will be alright. More than anyone, she trusts me with her care. And I will not let her down.
E inspires me with her innate bravery, her fierce determination to live her life fully and be like every other kid. But I need to be brave, too (these bracelets–called Bravelets*–remind me to be strong for her). I’m here to shoulder the brunt of the worry so that she doesn’t have to.
“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.” — Mark Twain
*Bravelets are wonderful bracelets where $10 goes toward the associated cause per bracelet. They all bear the “Be Brave” motto and come in different colors depending on the disease/disorder/cause. (For the ones I wear, the $10 goes to the CCFA, the Crohn’s and Colitis Foundation.) There are bravelets for cancer, autism, heart disease, and many other diseases and disorders. http://www.bravelets.com
I should be happy right now. E, diagnosed last June with Crohn’s Disease, is doing much better. She has had few bouts of stomach pain the last few months and we’ve been able to reduce her meds from seven to one. Her latest test results show she’s bounced back from her bad flare-up last year and the inflammation numbers are much lower. All good news.
In many ways, I’m thankful for how attentively her pediatric GI has handled her case. They are thorough and scientific in their approach, and have looked at everything from inflammation numbers to liver toxicity to vitamin D levels, ensuring nothing is overlooked. In the past eight months, E has had a colonoscopy, endoscopy, CT scan, hand scan to determine her growth rate (because of the steroids she was given in her early treatment for ITP, and because she’s small, there was concern that her growth may have been stunted; luckily, it hasn’t), bone density hip scan (steroids can also cause osteoporosis; negative), MRI, sonogram (to determine if pancreatitis was developing from one of her meds; also negative), and numerous, sometimes weekly blood and poop tests. We have a clear sense from all of this of her progress, which has, by all accounts and test results, dramatically improved. The fact that she’s been amazingly resilient through all of this, too, has only increased my admiration for her. It gives me comfort knowing this resilience will carry her though other life challenges, and I’m grateful she’s got it in spades.
So I should be happy. But as her caregiver and the one who makes the decisions, I’m finding myself at a crossroads between what the doctors now want—another colonoscopy–and what my intuition says is best for E right now.
Medically speaking, I have no right to question these doctors. When I vented to her hematologist, Dr. B (who is like a god to me, he got her off steroids and, eventually, got her ITP into remission) about all the tests she’s been given, he gushed at how thorough her GI doctor was, what a good job she’d done managing E’s Crohn’s to get her to this point. He thought E looked “better than I’ve ever seen her” and told us to come back in six months, the longest stretch we’ve gone so far between visits. From a case management perspective, the docs are doing their job, and doing it well.
But E is not a case. She’s a nine-year old kid who just wants to be healthy and go to school, play with her friends, sing, draw, ice skate, maybe even go to sleep-away camp this summer. She’s been scoped and poked and prodded and asked to drink disgusting, foreign fluids until she threw up. She’s been scanned up and down and sideways, and put into a large, loud, claustrophobic machine and told not to move for an hour (she did better than most adults, the technician said). She’s been needled and she’s pooped into plastic containers. And she’s handled it all with grace, charming every medical professional along the way with her can-do attitude and appreciation for their help.
But now, the prospect of another scope is stopping me cold.
A month ago, her GI doctor brought this up, just minutes after introducing me to their in-house nutritionist, explaining, “We like to treat The Whole Child.”
The irony was not lost on me. Here’s the thing, docs: The Whole Child is not a case. She’s a child who needs a break from these tests, to start to feel normal again. She’s a child who has two autoimmune disorders. They know remarkably little about the triggers for these types of diseases, but they do know that stress is a factor. They just don’t fully know how much of a factor it is. My guess is, it’s a leading cause.
And the scope last year—the 30 hours of prep, and then the after effects that brought us to the ER the next night to make sure there weren’t complications—was the most stressful of all of it. The doctor says this one won’t be as bad, because she’s not in the middle of a flare-up. The doctor says after this one, she won’t need another for 2-3 years. But given that they seem to love testing, what if she has another flare-up between now and then? Can I be assured that they won’t ask for another scope then? And more importantly, what does the Whole Child want?
Will I just go along with it out of blind trust that doctors know more than I do—a bias grilled into me by my father, a doctor, and the memory of my grandfather, also a doctor? After all, I’m just her mom. I didn’t go to medical school. Or will I say no, the prospect of more stress would be deleterious to her condition, a.k.a., not worth the additional data they’d glean from it?
I need to call the doctor to talk it over. But instead, for the past few weeks I’ve found myself sitting on the fence stressing her stress—and mine—and avoiding the conversation.
Today I will make the call.
Today is the first day of fall, and I’ve been looking forward to the change of season for a while now. Summer is usually my favorite season: I love all of the opportunities to swim, hike, be outdoors for hours on end and wear dresses without feeling cold. But this summer—I guess the best I can say is we got through it OK. Overall, it was a rough go.
It started off badly and got worse, then somewhat better. By June, my daughter, E, was having acute stomach pains, and despite two rounds of tests that said she was negative for IBD, her inflammation marker was very high. The last two weeks of school were torture. I called the doctor and moved the colonoscopy/endoscopy up a week. E got through the tests like a trooper but the news wasn’t good: Widespread inflammation indicative of Crohn’s disease. She was put on a host of meds; for several weeks, she only marginally improved. After fighting to avoid steroids but seeing little improvement, I relented. It was back to the pred again–a four-week stint, less than she’d had in the past for ITP, but the last thing I wanted. Friends in-the-know told me not to fear it this time. They were right: E started feeling better after a few days, and was virtually symptom-free for the last weeks before school. Our last visit to her GI in early September brought more good news: Nine days after going off steroids, the inflammation dropped to normal levels. All was looking up. We took her off another medication.
But in the past few weeks, the pain has returned. So we’ve added another medication. And completing a new round of tests. And she’ll be having an MRI on Columbus Day. And she may still need to see this world-renowned immunologist to rule out anything worse (as if two chronic autoimmune diseases, one of the blood, the other of the intestines, weren’t enough). I feel like a stranger in a strange land: GI-Ville, where little is known but much is tested. I wish I knew how to get us to a better place, but right now it feels like we’re walking down an unfamiliar road in a place we’ve never been—in darkness.
It’s not all gloom and doom, though. When I step back, I can see we’re holding our own, able to enjoy the good days without globalizing the not-so-good. We’re still having fun. We still laugh a lot. But I’m finding it exceedingly difficult to maintain a state of calm. The worry is incessant, like the ocean tides. Sometimes it’s low, sometimes high–but always there, reminding me that something just isn’t right. My child is sick. Again. And being like this for so long now, I’m starting to question whether I’m able to see things straight anymore. The rawness of it makes me question my ability to get a good read on things; I question how my emotions are skewing the picture. Am I overreacting too much? Am I turning what used to be minor annoyances into small-scale catastrophes? Am I fighting to be right instead of leading with kindness (my mantra to E)? I hate the drama of it all.
I’m hoping the change of season will reveal whatever our new normal is. Maybe then we will enter a new chapter of understanding, acceptance and peace.
I’m long overdue for this catharsis, so hopefully this won’t be too arduous or too heavy-handed, but as the saying goes, here goes nothin’.
Our last hospital visit, nearly three weeks ago, brought good news and the promise of bad. First, the good: E’s platelets were once again at a very healthy level, leading us further toward the conclusion that her ITP may, in fact, be in remission. Two and a half years after diagnosis, this should have been cause to celebrate. But at its heels was the not-so-good news: Despite the fact that the past round of bloodwork testing for intestinal disorders such as colitis, Crohn’s and Celiac’s all came up negative in March, the pediatric gastroenterologist, Dr. S., believed that E does, in fact, have Crohn’s. (Apparently a fair number of her Crohn’s patients also tested negative on the bloodwork but still had it. In the wide world of medicine, they call that a false negative.) We were sent off to do more at-home tests and, depending on those results, the high likelihood of an impending colonoscopy.
This happiness was followed by our looping back to E’s hematologist, Dr. B. After she left the room I asked him, point blank, “Is this going to suck as much as ITP?” to which he replied, “It’s probably going to suck even more.”
The last at-home tests confirmed the need for a colonscopy. But the doctor’s first available morning appointment isn’t for another three weeks. And so we wait. And, as I have for the past two and a half years–since December 5, 2009, to be exact–I try to keep things as normal as possible.
The good part is, this time of year we’re almost too busy, it being high season with my work (mostly conferences) and E involved in an upcoming variety show, her ice skating show, and B just getting elected to the board of education and now gearing up for that. It seems like spring and fall explode with activities and not enough time to do them all–and I welcome all the distractions.
But in those quiet moments, in between A and B, I’m left with my thoughts. And though I fight every day not to live there, I feel like worry is my undercurrent–always there beneath the surface, ready to bubble up.
The rational mind says, “There’s no point in worrying. Worry when you have to.”
Dr. B. says, “Promise me one thing. DO NOT go online to research this until you know exactly what you’re dealing with.”
My friends ask, “How are you doing?” They want to know what it feels like.
I try to keep the worry at bay. I know—having been on both sides of it, the jinxing side and the optimist’s side—that you’re much better off saving the worry until you absolutely need it. But the truth is, it’s there. It can be diverted, but it cannot be denied.
My child is beautiful and full of life. And we have many happy moments full of laughter. And we try to make the best of things and enjoy the good moments. But at least two times a week, she complains of crippling stomach aches that stop her in her tracks. She’s had worse symptoms, too. There’s something to it—I fear the diagnosis of another chronic condition, promising more hospital visits, pain, and suffering; more to take her away from just being a kid. It feels unfair: Couldn’t she just get a break and be able to say she’s healthy, and know it’s the truth?
I’ve told her the basic facts, without embellishment. But knowing the contagion of moods, I have tried very hard to keep my worry as far away from her as possible. Perceptive and inquisitive, she probably senses in part what’s going on, though. I am not that good an actress, and she’s too good an investigative reporter.
And so we wait. And will face whatever it is with realism and, yes, a good dose of hopefulness. Because that’s just how we roll.