All the cliches about time are true. It marches on, it goes by so fast, it waits for no one. We know it, and yet, as parents we can still find ourselves flat-footed and emotionally unprepared when a big milestone arrives.
Today is one for me. E turns 13 today. My girl’s a teenager now, growing up in leaps and bounds and putting it all together, the world and her place in it. I see an amazing young woman emerging, the shadow of little kid fading away.
I’m proud of who she’s becoming. (Can I brag a little? It’s her birthday.) Oh, sure, I could highlight the obvious things — her talents, her intelligence, etc. I’m proud of her accomplishments, as any parent would be. And I’m quick to get weepy (and thus mortify her) at her all-county concert or her big ice skating show. This June, she’ll be doing her first skating solo! Cue the waterworks. And the photos.
But I’m most proud of how she is on the inside, the stuff that makes her “a cupcake in a world of muffins,” as Maddie, one of her favorite camp counselors, described her:
She’s tender-hearted. She’s kind and empathetic, a loyal friend and supportive peer. Last year at her recital, after a boy she’d never met before who was socially awkward and shy played his piano piece, she tapped him on the shoulder and offered an emphatic, “Great job!” She thinks to do those things. (She’s not always this way at home, truth be told. But this is how she is in the world, and it makes me happy to know and witness it.)
She cares . . . a lot . . . about the world. From animals to preventing climate change, E has shown great interest in learning about the world her generation is inheriting and finding ways to make it better. This fall, when considering the option of getting solar for our new home, I asked for her input. I explained we’d need to make a choice, as we couldn’t afford both: Either get the panels now and delay her long-awaited dream vacation to Paris another year (or more), or forego the panels in favor of taking the trip. Without hesitation, she replied, “Get the panels!” (We did.)
She’s fun . . . and so funny. From her infectious, staccato laugh to her funky interpretive dancing to her off-the-cuff quips, her sharp sense of humor continues to grow in unexpected ways. And so far, self-consciousness hasn’t held her back. I hope this continues and her light isn’t dimmed by teen angst.
She’s a fighter. I’ve written about this a lot already, but I am so grateful for how strong and brave she is. Turning 13 marks the age at which she’s spent literally half her life grappling with two serious medical conditions: first, ITP, a rare blood disorder, and now, Crohn’s disease. We’re hopeful she’s conquered the first, with the help of an amazing doctor and the latest treatments. Unfortunately, this victory was immediately followed (shortly after turning nine) with more troublesome news, that there was an incurable underlying condition entering center stage. Her tenacity and pluck have been pushed to the limits, but they’ve never wavered. I wish it never happened; that she never would have had to call on these strengths to get through dozens of hospital trips, visits to the ER, invasive procedures, pain, medications, steeling herself for test results, and having to comply with the poking and prodding of a host of doctors and nurses. But we’ve learned that while attitude isn’t the whole battle, it is a huge part of it; that you do still have a choice—you can succumb to despair, or you can try to get past it. She’s a silver linings kind of girl. She has fought hard to live fully, and not allow her physical issues to define her. And they don’t! She’s done that for herself. That’s all her.
My girl is fierce, in the best possible way. She challenges me to be my best self for her, and it hasn’t always been easy. But it’s always been worth it. So happy birthday to my cupcake, my teenager! You make me proud, every day. And I love you more than you could imagine.
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 am not what happened to me. I am what I choose to become.” —Carl Jung
I have a lot to say right now but not much appetite to say it. Thoughts swirling around like mini-maelstroms, some helpful, some not. Like a turtle my M.O. has always been to suck myself back into my shell when times are tough. I don’t want to be seen as anything less than plucky, hopeful, a fighter. I don’t want people feeling sorry for me, or us. But I feel compelled to poke my head out and say it right now. The writer in me won’t let me go it alone.
It’s been a few weeks since learning that my nine-year-old daughter, E, who just recently went into remission for a rare blood disorder, ITP, now has been diagnosed with another serious, chronic lifelong condition: Crohn’s Disease. Ever since, we’ve been dealing with the immediate crisis of getting her over this flareup. The interim plan seems to be working: The inflammation was down somewhat last week, and she seems to be having fewer bouts of pain and they are of less severity.
All promising. But it’s not helping much with the crushing blow of having something else to contend with, getting in the way of just living a normal life (whatever “normal” is, still not clear on that). A carefree childhood, I guess, is not in the cards for E. And maybe it’s not in the cards for too many children these days. But I still can’t help but lament the fact that E’s path has been so difficult—downright treacherous at times—even for a tough kid like her. At what point will her mind say, “Enough!”?
We’re back to taking it day by day. And it’s going OK, I guess. Though it often doesn’t seem that way. Exhausted all the time, I’m having trouble focusing on things like work, completing errands and finishing household tasks. Like laundry: I get to the last mile but then can’t seem to put it away, so there are piles of clean laundry sitting in baskets for days. Mocking me.
So I carry on and try to accomplish the important day-to-day tasks as best I can. And I try to pepper our days with things to look forward to. And I try to find funny things to laugh about, because life is still funny no matter what. But it’s a struggle.
I know that this is hard and it will get better. But I just want this part to be over with.
My therapist says, “It’s OK to feel devastated by this news. Allow yourself to do that. It’s devastating.”
E says: “I don’t want to take all of these meds. They may help my body, but they’re not helping my spirit.”
Tuesday night E has her first appointment with a child psychologist to help her grapple with her feelings. I’m hoping this will help her. To my mind, she’s a therapist’s dream: articulate, in touch with her feelings and willing to express them, and in need of the kind of help that goes beyond what any parent can do.
Meanwhile, every day I learn of someone else who either has or knows someone with this disease, which I appreciate—we need the support, clearly—but I’m still in that overwhelmed phase where I can’t process all of this. Part of it is culture shock, because we now have gone from the land of the rare (ITP, 1 in 30,000) to the land of the many (Crohn’s, 1 in 200). I’m used to people not knowing anything about E’s condition and having to explain it. I even have a long and short version of that explanation (the short one is about 45 seconds, skyscraper elevator-pitch length). With Crohn’s, seems like everyone knows someone or knows something about it. But not all of the input is especially helpful. (Note to the seemingly well-intentioned: If you want to tell me about your family members who have had this, in the future, please refrain from mentioning that, in fact, one died of it.)
Retreating back to shell: Please forgive this self-indulgent pity party. And my need to get this out there. But maybe it will help get us to a better place.
With her ITP in remission, this new news is a huge setback to E, who, more than anything, wants to just live her life like a normal nine-year-old, without pausing for things like medications, blood tests, hospital visits, and worrying about whether her stomach will cause undue embarrassment for her at the worst possible moment: in front of her peers at school or camp this summer.
As before with health crisis #1, my parenting m.o. is to return her back to living a full and mostly uninterrupted life as soon as possible—or as soon as her body will allow it. Determined sorts, philosophically we are in accord that she will not be defined by her condition(s). I take her lead on how much (or how little) she wants to talk about it, and with whom, with the caveat that as before, I must tell anyone who is taking care of her (teachers, camp counselors, school principal, school nurse, etc.) what’s happening so we can set up protocols for her care and well-being, and they have a clear sense of what to do if something happens.
Though I’ve never done any time on the trapeze (and probably won’t. I don’t dig heights. Though I did hike Bonticou Crag: http://www.nynjtc.org/hike/bonticou-crag, so I guess anything is possible), parenting a child with a chronic illness seems a lot like what I imagine navigating the high wire would feel like. On the one side, you need to be supportive, empathetic, present. Nothing like a health crisis to remind you about who and what comes first. On the other, there’s the need to keep in place all of the expectations and limits that a high-spirited almost-tween needs. In her less than stellar moments, I often remind her that as her mom, my job is to raise a human being, not a beast. And while she does an admirable job holding it together for others, she can, at times, be a total pill with her close family.
Some of that was directed toward me yesterday afternoon, and I called her on it. After apologizing begrudgingly, E replied, “But I’m angry. I don’t know what to do with that.”
OK. No one likes being dumped on, but I take a step back from our mother-daughter fracas to appreciate her comment. No, I don’t like the behavior. And no, I don’t deserve it. But I am very grateful that my kid is so in touch with her feelings and able to express them. She’s always had a lot to say, and never had a problem saying it, often incisively. I have faith that her ability to identify and articulate her feelings will help her in this second-round fight back to better health.
Over the past few days, we’ve had an ongoing conversation about other things she can do to help her heal herself. She asked me what I do to stay in good health, so we discussed some of my go-to remedies. We talked about going to a doctor who she can talk about her feelings with. “Can we go Saturday?” she asked me. She’s eager. Yoga: Bored of downward dogging at age 5, she now says she’s willing to hit the mat again. We talked about acupuncture. E has witnessed me ‘get needled,’ and vehemently opposed it before. She’s now willing to try it. Like me, when faced with an acute health issue, she is game for the kitchen sink approach . . . don’t just do one thing, do many things. Then figure out what works.
So another chapter begins, the one where we learn through trial and error what works best to get her back in balance. In the meantime, I’ll stay up here on the trapeze and do the best job I can to not fail her. There will be no perfection; I expect to fall, maybe often at first. I am counting on those nets beneath me. But every day I’ll get myself back up there and keep trying. I owe her that.
“Life to you is a bold and dashing responsibility,” E’s fortune cookie, June 23, 2012
Since my last post, E has been symptomatic and often in pain for several weeks. When I called her GI doctor, Dr. S., early last week, they informed me that there was a cancellation; so instead of waiting another 10 days, we were able to move up E’s colonoscopy and endoscopy to last Thursday (the 21st). We mobilized quickly; did the prep (I think childbirth was easier); and showed up early Thursday morning. At this point, I was prepared to hear that she had IBD, but was hoping that it was an “early” case, that only slight to moderate inflammation would be found.
After a quick visit to her hematologist, we learned that her platelet count was well within normal range. All good there.
Then up to the outpatient surgical center. After a seemingly endless wait and several rounds of paperwork, E was finally brought in to the operating room. She counted down from 10, getting to two before the anesthesia did its work and I was ushered out of the room, her beloved Eeyore in hand.
Fellow parents, if there is one sight I hope you never have to witness, it’s seeing your child be put under. The horror and heartbreak of this visual—words cannot adequately describe it. This is my second time doing this, the first being her bone marrow test when she was 6. And despite the fact that she did it willingly this time—cheerfully, even, with a chipper “bye bye!”—it wasn’t any easier.
Deep breath. I regrouped. And then the wait. A little over an hour later, Dr. S came to get us (my mom was with me) and silently brought us back to the recovery room. I could tell from her expression that the news wasn’t good. Over the past few years I’ve learned it’s never really a good thing when the doctor looks troubled.
She told us she saw a thick wall of inflammation covering E’s colon, with inflammation in the upper tract as well. It sounded like she was surprised, too, by the severity of the disease. Signs were pointing to Crohn’s, but we would know more once the biopsy results were in, in about a week.
When E woke up, as promised, her first word was, “cookie.” (She hadn’t had any solids for a day and a half, and, as with all hospital trips, there was her favorite black-and-white cookie purchased from Lenny’s waiting for her.) She was in good cheer and happy to have the big test over with. After I tried to briefly explain that they saw some inflammation, she quipped, “My insides are a bouncy castle!” I let it go, happy she was happy it was all over with.
But in the days that followed, her stomach pain worsened. And on Saturday she could barely move. After speaking with the on-call doctor, we ended up spending a very long night in the local ER, where they did more blood work, gave her IV fluids and a CT scan to make sure there weren’t further developments or complications from the procedures. Luckily, there weren’t. Yesterday, I met with her Dr. S who confirmed that all signs are pointing to Crohn’s: another serious, potentially life-threatening lifelong condition E will have to deal with, just as we’re finally in a good place with the first one (ITP). It wasn’t unexpected, but it stung just the same.
(Note: I could succumb to a Nancy Kerrigan “Why us?” moment, but I don’t really believe in any sort of grand design determining this or any other outcome. So while that thought crosses my mind sometimes, like a pesky fly, I swat it away. I have no place for it.)
So, the news is not good. We have a plan, though, and great doctors who really care about E and getting her better. We have a wonderful support system, family and friends who helped get us through last time and I know will be there again for this. I’m confident we’ll get through this and get to a better place.
But right now . . . the part that’s most difficult right now is that my kid, my plucky, amazing, tough, resilient kid, seems resigned to her fate, which is so heartbreaking. From all I have witnessed as her mother, in everyday moments and as the one at her bedside, I can tell you that she is the bravest person I know. But right now, I’m not seeing the fight in her. Pain, lethargy, the gradual resignation that she once again is a “sick kid” are taking their toll on her, physically and emotionally.
I want my tenacious, vivacious fighter back. I’ll do whatever it takes to get her back. She’s too strong to go down with this blow. And hopefully I am, too.
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.
The incomparable words of Alfred E. Neuman are quoted fast and furiously over our long blended-family weekends. His Pokemon phase gloriously fading, K, my soon-to-be stepson, now can’t get enough of MAD TV. And while I much prefer this obsession to the last one—have you ever tried to watch a Pokemon episode? There’s 24 minutes you’ll never get back—these days his looped repeats of “What, me worry?” seem to mock me at every turn.
In February my daughter, E, reached a milestone: Four weeks off her weekly shot, N Plate, her platelet count stayed within normal range. At the hospital visit with her doctor, to whom I give all the credit for her progress, I asked him how important this number was. “It’s huge,” he said.
Huge is a huge word to a mother’s ears, and not one Dr. B had used before. E’s case, while not the toughest he has faced, has been no walk in Prospect Park, either. When we came to Dr. B, the final stop for many of the toughest ITP cases, we were at our wits’ end, child puffy and steroid-riddled, mom depressed and holding onto the last thread of hope that this doctor would have the answers. After logging in two months of overnights at Westchester Medical Center, the specialists who were treating her there threw up their hands; they were out of tricks. Their next move would have been splenectomy. So in April 2009, five months after her diagnosis, off we went to our second-opinion doctor, one of the world’s leading blood disorder specialists. He was our last hope.
The promise of N Plate, the drug she was just weaned off of, took nearly four months to be realized. And we had to add a pill to supplement it, which I initially resisted. But in late July 2010, it happened: Her numbers shot up, well within normal range, instead of taking their usual roller coaster dive. From that point on, she said goodbye to steroids and IVIG treatments. The new course was working. The following March, we started slowly reducing her N Plate dosage–her numbers were comfortably in the normal range now, and had been for months. By last fall, she was only receiving a tiny dosage and still maintaining healthy platelet counts.
So in January, it was time to see what her body would do without the medication that had stabilized her. A month later, we were hopeful that she would hold her own, but as with any chronic autoimmune issue, even the best specialist can’t fully predict the outcome. Every patient is different; there is no one path to recovery.
Yes, February15th was a “huge” day, the day we started to believe that E may, in fact, be in (dare I say) remission. What a huge relief. And four weeks later, just this past Monday, her platelets were at a very healthy 280 (that’s short for 280,000. A normal platelet count falls between 150,000 and 400,000). I should have been ecstatic. And part of me was.
But the other part was crippled by a new fear: another health issue E was grappling with, this one of a gastrointestinal nature. Could it be Inflammatory Bowel Disease (IBD)–a la Crohn’s or ulcerative colitis? Celiac’s? Or possibly just a passing gastrointestinal virus? (I am doubtful of this, as are both her pediatrician and Dr. B., but E’s dad—always eager to find the easy answer—is convinced that’s all it is.) All will be revealed–next week.
The three rounds of tests now in the lab, this is the “waiting week.” And despite hitting the mat every morning, there’s no amount of Zen that can make this less worrisome. E is feeling it, too. When I implored her to “try not to worry” a few days ago on our ride home from school, she quipped back, “Too late.” Yes, we’re all worried, and not ready for another health battle on the heels of the first one. Whatever it is, though, we’re getting prepared to fight if we need to.
More than a less-favorable diagnosis, dealing with more doctors, experts, symptoms, treatments, and uncertainty, my biggest worry is what another chronic condition would do to E’s childhood. She’s a good kid. She’s suffered enough. So, I’m putting this out there to the universe: Isn’t it time to let her be a normal kid again? That’s my wish. And then maybe I’ll be able to agree with Alfred, that it’s really just madness to worry at all.
“Squeeze my hand if you’re scared,” E tells me. It is 5am and we are huddled together in bed, braving a violent thunderstorm. Terrified since lightning struck our home a few years before, I was trying to give comfort to her, my seven-year-old little dynamo. But she called me on it. She knew: I was probably more scared than she was.
One day I will learn whether she felt my fear about her illness much the same way, whether she saw through the brave face and semi-calm demeanor. It was a Saturday night, one year ago exactly–December 5, 2009–that E was diagnosed with ITP, a rare blood disorder in which her body’s antibodies kill off its platelets. Two days shy of Pearl Harbor Day, this was our own version of a day ‘that will live in infamy’ . . . the day that changed everything.
That morning, she woke up again with a bloody nose. This happened the night before, but it wasn’t excessive, not witnessing any other symptoms, I chalked it up to the dry heat. But on this morning, there was some dried blood on her pillow and her legs had several bruises with tiny pink dots surrounding them. And the sore on her lip–I assumed it was a chapped lip aggravated by biting, which she often did–seemed to have mushroomed overnight. No temperature, though, and she swore she felt just fine. She was aching to get to her karate testing that day to get her yellow belt. I agreed, but told her we would need to go to the doctor immediately afterward.
Once at the testing, another clue emerged. My little firecracker, so intent on getting to yellow, was positively phoning it in. She had zero energy, was barely able to complete any of the moves. I turned to B, my boyfriend (more on B later) and said, “Look at her. I’m worried.” He agreed. This wasn’t like her at all.
At the after-care facility later that afternoon, the doctor couldn’t tell me what it was, but told me I needed to get to the closest hospital’s ER for blood work immediately. I asked him what the worst-case scenario was. He said, “meningitis.” Gulp.
We left quickly. The snow that had started to fall earlier was starting to stick; visibility was poor. I am still unsure, given my sky-high anxiety and the poor road conditions, how I got us to the ER–a good 15 minutes away–safely. It was one of those out-of-body experiences where you just autopilot it, I guess.
The ER at Vassar was quick and professional. They got us in right away. Once the doctor came in, I asked them the same question about worst-case scenarios. This time, the reply was, “ITP.” It took four nurses to hold E down for the blood test. (We later joked that she got her yellow belt that morning and got to use it that evening.) Forty-five minutes later, with a platelet count of 3,000 (normal range is 150,000 to 400,000), the doctor confirmed that she did, in fact, have ITP and required immediate attention. An ambulance was on its way to take us down to Westchester Medical, where they had the specialists and a bed ready for E to receive treatment.
That was last December. Since then, we’ve logged in dozens of trips to the ER and overnights at the hospital, nail-biting moments awaiting results. On our second trip back–a little over a week after we were released–she was given a bone marrow test to make sure it wasn’t leukemia. But the doctor–a star but not a procedure guy–failed to give me the beeper to alert me when she was done, so what should have been a 15-minute wait went nearly an hour as they tried to locate me (umm . . . I was in the waiting room.) I was terrified that something happened to her, but when they finally did find me, the news was good: There was no evidence of cancer. It was definitely ITP.
We celebrated several of the major holidays–New Years, her birthday–in the hospital. As the months went by and our trips became more commonplace, I learned who to trust and who needed to be managed. Above-and-beyond nurses helped us as we endured more than one apathetic resident and waited for the doctor’s daily rounds to hear our fate. Were we getting out that afternoon? Or one more night? What next?
By early spring, it became clear that hers was a particularly bad case and needed more specialized care than the doctors at Westchester could give her. We defected to the top ITP doctor in New York City, a specialist who had experience using the latest treatments out of the biotech industry. The promise of better managing E’s condition and getting her off the steroids/IVIG bandwagon and avoiding a splenectomy, which one particularly hard-core doctor was advocating. But a spleen is not a vestigial organ, so the promise of this new treatment–called N Plate–offered new hope. I was game.
We struggled through the spring and half of the summer until the new treatment finally started working. I had to give up work for months to be there for her, a big sacrifice both professionally and financially. (My mom stepped in to help financially. Otherwise I honestly don’t know what we would have done.) In the spring, I was diagnosed with depression. Reluctantly, I went on medication for three and a half months, enduring the side effects to get me out of the fog and get clear-headed again.
No matter what, I made sure that every day, we found something to laugh about together. If I couldn’t fix her physically, I could use all my mommy muscle to keep her spirits up. On the good days, I planned play dates and activities so she always had something to look forward to. It wasn’t hard: We have been blessed to have such a strong and loving network of friends and family who made themselves available to us and went out of their way to help out. Hillary was right: It really does take a village. Sometimes you don’t know it, though, until you need all the villagers.
If there is a silver lining to having a child with a life-threatening illness, the biggest comfort has been that this has been a shared journey. As parents, we all want our children to know that we are there for them, physically, emotionally, spiritually. Children take comfort in the knowledge that we would do anything for them if the need presented itself. ITP allowed me to demonstrate to E that I would put my life aside to take care of her. She knows I have her back.
As I write, we are not out of the woods yet, but our lives have vastly improved. She is stable enough that our once-weekly hospital visits are now monthly; the at-home nurse administers E’s shot in the intermittent weeks. Getting our time back has meant a return to a mostly normal life for both of us–school and activities for her, freelance work (and the job of getting more freelance work) for me.
My biggest hope is that someday soon they will tell us she has fully recovered. And while we’re not there yet, today didn’t just mark E’s one-year anniversary with ITP. It was also the day she got her orange belt. And did so with gusto.
NOTES ON HER ILLNESS: In children under 10, ITP most often happens soon after recovering from a virus. She had H1N1 two weeks before, and we believe this was the trigger that began our most terrifying journey. For most children in this age group–80 percent–ITP goes away on its own within six months. E unfortunately has fallen into the 20 percent category of children who have chronic ITP, which means it may or may not go away, or it may go into remission only to return to her later in life (in particular, for girls with ITP menstruation and pregnancy can trigger a recurrence.) Every ITP case is different; there is no set pattern. Time will tell.