Siblings of Sick Kids

This week, Wendy had four doctors appointments.  Four times we packed up and schlepped to a specialist or pediatrician.  Four times in the waiting room, four times for triage, four times in the exam room, five conversations with doctors, three with nurses, and one blood draw.

It was a tough week, a frustrating week, a week that even for us in this point in our lives is unusual.  Sure, we have more doctors’ appointments than the average family, but because it was school vacation week, we loaded up on the specialists so Wendy didn’t have to miss academic classes.  Add in a few problems and we got a few more appointments.  It was dismal.  It was awful for Wendy and was awful for me.

It could have been the worst, however, for my younger daughter, Penny.

Penny.  I got pregnant with Penny while we were waiting for a kidney transplant for Wendy.  We decided to name her Penelope after the wife of Odysseus.  In The Odyssey she is often called “Circumspect Penelope,” who is smart and shrewd, who has all of the skills of a politician, but who is known first and foremost for her patience.

We needed patience while waiting for the kidney.

There aren’t many worse times that I could have gotten pregnant.  I couldn’t handle some of Wendy’s medications because it was bad for the fetus.  I couldn’t go into the operating room when the kidney arrived because there were too many risks with anesthesia for a pregnant woman, and at the time I was in my second trimester.  We moved back to Vermont from Boston when I was in my 39th week; I gave birth three days later. Her arrival to our family was both joyful and grounding:  it served as a reminder that we couldn’t live in the past of Wendy’s medical history.   Suddenly there was another person who needed love and protection, patience and understanding.

Penny has never known a moment of her life without a sick sister.  To her it is the normal thing.  I remember when Penny was in kindergarten and she asked me when she was going to get her own kidney, when she was going to be a diabetic just like her sister whom she adores more than anyone in the world.  It was the same kind of questioning that I got when she asked when she could play soccer like her sister, run in triathlons like her sister or get her ears pierced like her sister.  The medical issues were just part of the deal.

When we go to the doctor now, Penny packs herself a bag of things that keep her occupied.  She’s reading chapter books now, so she brings one, along with an intricate coloring book and some markers.  Sometimes she will bring shopkins or stuffed animals to play with. She is exceptionally good at keeping busy.  She almost never complains she’s bored. But sometimes she wants to be on the exam table with her sister.  She often requests a snack after an appointment.  At our last appointment, she wrote me a note that said, “Mom, I love you.  And I’m Hungry.”

When I was a kid, we had dinner together as a family every night and 95% of the time my parents had cooked it.  I thought that’s what every family, everywhere did, and was shocked when I found out differently.  Sometimes I wonder if Penny will think that every family, everywhere knows exactly where to park at Massachusetts General Hospital, doesn’t need a map, knows the back door entries, walks to the science museum after a doctor’s appointment, goes to the park or picks the perfect place for lunch after an ultrasound.  That every family is comfortable in this environment, because we are.

I also wonder, and worry, whether Penny will look back on this time in all of the doctors’ offices and think it was all a colossal  waste of time.  For now, she’s too young to stay home alone, and we try to do fun things around the visits so they aren’t too onerous.  She is also too young for any support group for siblings of sick kids, and I wonder if she’ll want to go to them once she can.

The unavoidable truth is that a child’s illness doesn’t just affect the child who is sick, it affects the whole family, siblings included.

That’s one of the reasons that we moved back to the Boston metro area from Vermont.  When Penny was three years old and Wendy was post-transplant for three years, we weighed the pros and cons of moving to a town closer to Boston.  Yes, we were certainly moving to have Wendy closer to her medical home, but we were also moving so that there would be a community of support for Penny, so that we wouldn’t be four hours away from her when Wendy was in the hospital, or she wouldn’t be four hours away from her school, friends, and activities once she got older.  We were reassured that we had found the right community when numerous families offered to take Penny while Wendy went into the hospital a few months after we arrived in our new town.

Luckily, Penny is the kind of kid that just blends in with families, and even more luckily, we haven’t needed to rely on the good grace of our friends because Wendy’s been overall healthy.

One of the best pieces of advice I was ever given was, “As a mother, you are only as happy as your least happy child.”  We have to pay attention to the needs of both kids, as much as we can, and help them to be good, strong, empathetic, resilient adults, whether they have special health care needs or not.

 

 

 

 

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Dear Doctor S—-

Dear Doctor S—-

I want to thank you.  Really.   Even though you gave us bad news, I want to thank you for your approach, courtesy, and helpfulness.

Truthfully, we don’t know you well.  Wendy goes to see you once a year, to get new glasses.  We were just there a few months ago.  But in the last month or so, she was having a hard time seeing again, and I thought maybe it was growth or puberty or whatever, and I took her back to you.  I had Penny in tow as it was school vacation week.

You remembered all of us and asked us each questions about work, school, sports, and our town.  You spoke about people we knew in common.  You were ok with Penny playing on the floor of the room while you conducted your exam.  You don’t know how much I appreciated that, most of the time doctors find the extra child to be tiresome at best and a nuisance at worst.  You totally went with the flow of our chaotic life.

You examined Wendy and realized that it wasn’t really her vision that was off, that her prescription didn’t need to change that much, so you looked for more problems.  It turned out that Wendy was seeing double.  You examined her and you asked her good questions.  She had a hard time explaining some things, and you encouraged her by telling her that you know these things are hard to explain, but she was doing a good job and she should keep going and he would ask questions for clarification.  Doctors don’t do this often enough, not only did you engage Wendy, but you encouraged her, and when she didn’t have the right words, you asked thoughtful, non-threatening questions to help her.  Then you let her and Penny go out to pick glasses.

And this is a small thing, but I need to mention it.  Your staff was totally fine with both girls trying on as many glasses as they wanted to, and Penny didn’t even need them.  They let them try on a hundred glasses, or what seemed like it.  They were patient when the girls wanted to try on the crazy cat eye glasses or the pointy square glasses.  Eventually they narrowed Wendy down to five pairs, then three, then two, but they let the girls explore and have fun in the process of finding just the right pair.  No one judged them, no one told them no, no one worried they were going to break something (except perhaps me.)

While the girls tried on their fashion accessories, you told me about your concerns.  Based upon Wendy’s medical history, her medications, and her symptoms,  that I should speak to her specialists immediately, and that I should contact her pediatrician and make an appointment. You answered all my questions.  You continued that I should ask about a neurology consult and that this likely will lead to more tests.  All of these things you did firmly but not in a way to try to scare me.  You just let me know that something was wrong, it was serious, and we needed to look into it.  Then, and this is important, you helped me by telling me EXACTLY how to look into it.

I’ve been doing this a long time now doctor, almost nine years.  I pretty much consider myself a professional hospital parent, and I have to tell you that you did everything right.  Your exam was thorough, you were ok with the extra kid, you validated Wendy and her explanations, you explained your concerns to me, and you helped show me the way to the next step.

I don’t know what the outcome will be, this is a new needle in the haystack of Wendy’s medical conditions, but I want to tell you how much I appreciated our encounter yesterday.

Yours truly,

Darcy Daniels

New Faces At Grand Rounds

One day while Wendy was in the hospital in late 2007, an endocrine fellow came in to ask us if we had any pictures of her that we would be willing to share.  The fellow was presenting Wendy’s medical case at Grand Rounds and she wanted to add a few pictures to  the slide show.

At the time, we didn’t know what Grand Rounds was.  Grand Rounds is an opportunity for doctors to present challenging or unusual medical conditions to their colleagues, along with what the course of treatment was, and allows a venue for the presenter to be challenged by his or her  peers.  It is a way to educate doctors both whom are going to the presentation and for the presenters themselves.  It was a novel approach to have pictures of Wendy in the slide show, because for the most part Wendy is just supposed to be a “case” to be discussed, not attached to a face.

I remember thinking that like other parents, someday I wanted Wendy to be famous, but I never thought it would be like that.

A few months later, I was approached to speak at Grand Rounds myself.  The Family Advisory Council at MGHfC spoke at one Grand Rounds a year surrounding the topic of family centered care, the idea that it is not just a child that the hospital is treating, but the family of the child as well. This Grand Rounds was designed to ask parents and patients if they had anything they felt was important to share with doctors of their children.  Michael helped me prepare as to what I was going to say, and I have to say I was nervous, but it was a really positive experience. The doctors asked good questions and it was all together well received.  The Family Advisory Council has sponsored Grand Rounds around conversations and communications between providers and parents, as well as asking doctors to speak as to how they have changed their medical practice as the result of having a sick child.  These are unique opportunities for doctors and parents to arrive at the same goal:  understanding each other in the quest to give the best possible care to children.  It has been an incredibly successful  endeavor.

Now, a new approach: having the pediatric patients speak directly to the doctors at Grand Rounds. This was the first time that an entire panel of speakers was all pediatric patients, at least at Massachusetts General Hospital, but I suspect that this is new territory for a lot of children’s hospitals across the country.

Wendy spoke yesterday with three other patients about their experiences.  All four patients were teenagers, (well, Wendy was twelve and the youngest), and they were all what we would call “frequent flyers” in the medical world:  they were patients who had been there a lot.  One teen had cancer of the jaw, one teen broke a vertebrae while playing football, and two teens had undergone kidney transplants.

The themes were rather universal and centered around anxiety and communication.  The teens asked to be listened to fully, have procedures explained to them, be addressed by their names and really be a full partner at the table.  Isn’t that what we all want in medical care?  What’s funny is that doctors know this, and I would be willing to wager that they think they are doing a good job at communication, especially those who work in pediatrics.  Yet the gap in communication remains.

Here’s why I think yesterday was most beneficial.  One:  people connect to stories, and these kids had stories to tell.  They are survivors in the medical world.  They have grit. And they are vulnerable enough, willing enough, courageous enough to tell their stories, to tell what could be improved upon, to their doctors.  Doctors don’t often get the opportunity outside of inpatient setting or the clinic to hear how they can improve.  Two:  a lot of these teens really made an impact on their doctors just by returning. They had been so sick and had such a positive outlook nonetheless, and they were succeeding in the world, not just as patients, but as people.  They were inspiring.  I don’t think that doctors often get to see their success stories years later, when patients leave they don’t come back, much like students and their teachers.  Both medicine and education have a long term return that you don’t often get to see:  the success of the child due to the efforts of the doctor/teacher.  After grand rounds, so many doctors came up to me to tell me how wonderful Wendy looked and how grateful they were to see her.

Pediatrics is a tough field, but one of the things that a doctor said yesterday is that it also garners hope, which is a powerful motivator. Those teens yesterday might not know how incredible they are, they just know that they have an extra burden of medical issues.  It’s the adults in the room who are affected by their tenacity in the face of adversity. Not just their tenacity, but their optimism and sense of self.  They are not patients, they are people.  They are success stories.  They have a voice.

This is the new face of medicine, partnerships in success through communication.  Yesterday was just one of the steps in the process.

A very welcome step.

 

Find Your Tribe

It’s important to find groups and organizations who support you in your journey as a caregiver, both in the short term, and in the long run.
Wendy had a strange illness. It wasn’t a genetic defect, or cancer, or cystic fibrosis. She was born completely healthy. Her illness was a result of a bacterial infection that turned into a syndrome. As a result, there weren’t a lot of support or advocacy groups out there.
Advocacy groups are great. They are a clearing house for information , because usually the thing you worry about for your child is a normal worry associated with that illness. There are so many advocacy groups out there for cystic fibrosis, heart disease, low birth weight, cancer of all kinds, food allergies Crohn’s disease, kidney disease, you name it. Many times you can find a local chapter of your needed advocacy group nearby and it helps to talk to people who are going through exactly what you are going through.
We found that though the syndrome didn’t have an advocacy group, that there were other avenues we could travel down for the same kind of support. One was STOP foodborne illness, which is an advocacy group that supports people who have been struck by illness associated with food, like e-coli or salmonella. They do work in the legal sphere trying to cut down the use of antibiotics in factory farming, but they also support people who have been struck down by the illnesses they are trying to prevent.
We also turned to the diabetes advocacy groups. As a result of her illness, Wendy’s pancreas works at 15%, which means that she needs insulin on a daily basis to digest her carbs and sugars. She’s neither a type 1 or a type 2 diabetic, but she has the same concerns as a diabetic kid. She feels isolated and left out as a result of her illness, because she’s the only one who has to check her sugar, count her carbs and give herself insulin. She LOVES being in a room where everyone else is doing those things too. She loves to go to diabetes camp as a result. She loves to belong to a bigger group.
We also are a part of the transplant community. This one is a little more ambiguous. It’s multi-age, and multi-organ because there aren’t many people in the world who have organ transplants. I like this group because it’s amazing to sit in a room full of people who wouldn’t otherwise be there except for the generosity of a donor or a donor’s family. And as a result, the people who are the recipients just radiate gratitude. They know they’ve been given a second chance in life. They know what’s important.
Part of being in groups like these isn’t just receiving their collected wisdom, it’s also about participating and giving your energy as well. It’s just as important to give back, once you are in a place to do so. Obviously you can’t give back when you are in a time of crisis, nor does anyone expect you to. But once you’ve calmed down, it’s important to give back to an organization that you have used as a support and an anchor. I’m not just talking about money, but manpower as well. Wendy does a run every year to raise money for her diabetes camp, The Barton Center. It’s a summer camp dedicated to diabetic girls, with nurses in every cabin. It emphasizes self reliance and not putting barriers on yourself. It brings in speakers who are both diabetic and amazing, like triathletes or ultra marathoners. It shows the girls that anything is possible, and diabetes is just a part of their identity, not their whole identity.
Wendy also is going to participate in the American Transplant Games this year, in Cleveland Ohio. She is going with Team New England and she is going to participate in both the swimming and the track and field events, and she’s going to kick butt if I do say so myself. But more importantly, Wendy’s participation and the participation of all of the transplant recipients showcases the worth of organ donation. When you see all of the people who have been touched by organ donation, in one convention center, it is a very powerful thing.  I’m sure that I will be blogging from there in June.
It’s not just about joining a group, and I can’t stress this enough. As a parent of a chronically ill kid, your time is stretched too thin already. It’s about finding meaning and purpose in a group, and it might be a group that isn’t centered around your child’s illness, exactly, but will still do a world of good.
The best thing that I do is sit on the Family Advisory Council at Massachusetts General Hospital. It’s a body that is half parent and half provider-staff. We meet once a month and help to make the hospital better for all children. Often we are a resource to proofread new source material for the public, give feedback on architectural designs for new departments, or run workshops on staff helpfulness. We speak to new residents about what it’s like to be the parents of kids who are in the hospital a lot. We sit on hospital wide committees for quality and safety, ethics, or inpatient satisfaction. We even sponsor a Grand Rounds once a year that focuses on family centered care. It not only improves care for every child through fostering communication between provider, parent and patient, but it makes the hospital better for MY daughter, every time. I know more of the doctors, more of the nurses. At the very least the residents and fellows have all seen my face, and I know a lot of the attending physicians by name. It keeps a connection so that the next time we go in to the hospital (because there will always be a next time) that we’re not met with brand new faces in a large city hospital. I honestly think it’s some of the best, most measurable, work I do on a macro scale.
Another benefit of being on the FAC at Mass General is that I also come in contact with parents just like me who are not only concerned, but passionate about making the hospital better, who come to the work not out of anger because of the hand they have been dealt, but constructively taking their experiences and working with doctors, nurses, and staff to collectively make the hospital stay better. Honestly, sometimes I look around that room and marvel, the men and women sitting at the table could be considered “professional hospital parents” because their child (or children) have been inpatients so often, some of whom have passed away as a result of their illnesses, and yet they choose extra time to be there, in the evening, to work out the snags and make the hospital better. I take strength from their strength.
Being the parent of a chronically ill kid is isolating, but there are places of refuge. Advocacy groups, hospital committees, or even online groups. But don’t just be a bystander, don’t just be a taker. Give back. Your contribution not only makes the organization stronger, but makes you stronger as well.

Find your Tribe.

Everyone benefits, and as a result, there are flashes of brightness in the dark. Together you can find a way to make your child’s illness better, and hopefully the experiences of other families better too.

Snow Day in the Hospital

This unexpected snowy day got me to thinking about a day when Wendy was in the hospital, many years ago.  She had been there for months, literally, and one day in late December there was a heavy snowfall.

Looking from the window of the 17th floor of the Ellison Building at Massachusetts General Hospital, the whole city of Boston looked so clean and amazing.  We were on the river side, and the Longfellow bridge looked like it was topped in cool whip.  Being a child from Vermont, Wendy desperately wanted to go outside, but it just wasn’t a possibility.  She was in heart failure, and we were measuring every ounce of liquid that was going into her.  There was no way we could account for how much snow she would eat, and how much liquid that would be equivalent to.

Wendy was so disappointed, but there wasn’t much we could do as parents.

However, the staff came up with a plan.

The PCA (Patient Care Assistant) went down and got a bowl full of snow.  Wendy’s nurse measured it out, put it on a scale, and slowly let it melt.  They then poured it in a graduated cylinder.  After they figured out how much snow by weight equaled how much water, the PCA went down to the quad again and got Wendy some new, fresh snow.  Can you imagine, a child who has only seen the inside of a  hospital room for months, who only knew the sounds of the machines and the buzzers ,the television, the woosh of the forced air, who only knew the sterility of the meal trays, the plastic covered hospital bed, the stethoscope hanging over her head, getting a bowl of snow?

It is those moments of compassion and spontaneity that we are grateful for, now, looking back.  It’s easy to forget the monotony of the endless days that stretched together during her recovery. But that one moment of brightness, that is one moment that we will never forget. They sustained us then, and they sustain us now.

I was recently reminded of the story when I heard of a similar one on NPR.  The Show is Called “On Being” and it airs on Sunday morning.  One morning in January, I was listening to a man who had tragically lost three limbs through an electrocution accident, and the one thing that brought him comfort in the burn unit was when one of his nurses brought him in a snowball, connecting him back to the real world in profound ways.  I highly recommend taking the time to watch his TED talk which I’ve posted here.   Somewhere in the middle, he tells the story of the snowball.   He now works a as the executive director of the Zen Hospice Project in San Francisco, where the idea is that life still happens even when death looms and it is a combination of compassion and dignity that makes a medical caregiver a healer.

Whether it is called compassion, palliative care, or hospice, the world needs more healing moments.

Photo:  Wendy, the year after the long hospitalization, finally making a big snowman.