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Thoughts For Families With a Sick Child

Childhood CancerHaving a child who is going through health issue can be a very difficult time for a family. You can find yourself feeling lost and alone, overwhelmed, and unsure of where to turn. As a mother of three kids, I have been there myself, and while I’ve been lucky enough that my kid’s health issues haven’t been as serious as cancer ( though we did have a couple of scares) , they have been difficult so  I can understand the stress parents go through. I’d like to share a few things that helped me, and I hope you find them helpful too.

First, take a minute to catch your breath. When you first find out that your child has an illness, it can feel as if you are being bombarded with so much information that your head is spinning. You may feel as if you are almost drowning under the weight of it all. That’s normal. After all, who wouldn’t feel that way upon hearing this type of news? Take a minute and breathe deep breaths.  I know that sounds trite, but it’s true. Allow yourself time to find your center. This will help you in the days that lie ahead.

Give yourself time to absorb the news you have been given. Ask your child’s doctor if you can have a bit of time to develop a list of questions and concerns before you make any major choices. Keep a pad of paper or some other way of taking notes with you all the time so that when something comes into your mind, you can record it before it slips your mind.

Some parents find it helpful to go online and find out every bit of information they can about their child’s condition. Some would rather not know. Do what’s right for you, but I would strongly suggest that if you “take to the ‘net”, you quickly develop a filter, as not everything on there will be helpful to you or even true. Use what helps you and forget about the rest. Take your child’s medical team’s answers as the final authority, as they know your individual situation and all the factors involved.

Based on the age of your child, you may have a lot of questions from them. There may also be fear, sadness and anger from them about their diagnosis. Again, all of that is normal. Allow them to feel what they feel, and understand that you can’t fix everything for them. That’s a hard one for most parents. I have been here myself, and as much as I wished I could take all their pain on myself and make them better, I had to accept that I couldn’t.

Give your child a way to express their feelings. If your children are anything like mine, it may be hard for them to talk about their emotions, especially with their mom or dad, but they still need to let their feelings out.  You can purchase a special journal for them Sick Childto write in, allow them the opportunity to draw, paint or express their thoughts through some other medium. For some kids, a mobile device such as a tablet or netbook with a journal app might be just the thing.

On the subject of feelings and emotions, you’re probably going to go through a whole range of them too. Sadness, anger, uncertainty, and fear (lots of fear) are to be expected. Just as with your child, you need an outlet too. Journaling, talking with supportive friends and family or a professional counselor can make a big difference. If there are support groups in your area, make good use of them.

If you are married or in a relationship with your child’s other parent, going through something like this can strain that bond. Keep it mind that the strain doesn’t have to translate to a break. Be there for each other, and if you need help, this is another place ab where counseling can make a big difference.

If you are having trouble navigating through the health care system, find out if there is a patient advocate that you can access. They will be there for you and your individual situation, and can make the whole process much less stressful.

Having three kids, something that I have found it that it can be all too easy for the siblings of the ill child to feel as if they are being lost in the shuffle, which is understandable. Recognize that this is a very difficult time for them as well, and they need you too. Try and carve out some one on one time with them if you can. Even if it’s just taking younger kids to the playground or the older ones out for dinner, it will make them feel loved, which will go a long way.

One more thing about siblings that I found out the hard way. Depending on their age and ability to understand, don’t try and sugar coat the situation should they ask questions. Be honest. I don’t mean you have to be brutally honest, but keep in mind that, especially with internet access, kids today can easily find out a lot of information on their own. What they may well be looking for is honest assurance. In the case of one of my own kids, we told her younger brother that she was ill, that her doctors didn’t know why but they were doing everything they could to make her better. We gave more “technical” information to her older sister, but it had the same underlying message. If you don’t know the answers to your kid’s questions, it’s okay to admit that. Let them know you will try and find out the information they are looking for.

Keep FightingSomething that is incredibly important for any parent with a child who is facing a major health issue (or any parent for that matter) is to find some time to take care of yourself, and to not feel guilty about it. You need to “recharge” so you can be there and fully engaged for your little one. You can’t do that if you are worn down and exhausted. Take some time to have a decent meal out (and not in the hospital) go for a quiet walk in the park, do some window shopping, read a book, get together with friends and family for an afternoon, go to a movie, show, concert or game, work in your garden, play a sport you enjoy, get your hair done, meditate, do something, anything, to give you a few minutes where your mind can relax. It will leave you fresh and ready to keep up the good fight.

I mentioned it above, and something I can’t endorse enough, is to find a support group for parents going through something similar to you. It can do you a world of good to talk to other people who know and understand.

Finally, one really important thing to keep in mind is that it’s okay to be angry at the situation. It’s okay to wonder why this is happening to your child, it’s okay to be sad and to even cry, to be frustrated, and to feel like you are being pulled in 100 different directions at once. If you feel guilty, remember, none of this is your fault.   You don’t have to be strong and carry the weight of this alone. There are supports that exist to help you, so please ask your child’s doctors or hospital care team about how to access them.  If all else fails, and you feel like you are at the end of your rope and just want to scream, go ahead and do it. Find somewhere private and just cut loose with everything you’re feeling. It can do you a world of good. I say that based on personal experience.

I hope that this has helped you a bit. Bering a parent is one of the toughest jobs, and when you find out your child is sick, it gets 1000 times more difficult. Take care of, and be patient with, yourself. You are doing your best to navigate through a situation nothing can really prepare you for. You are finding your way the best way you know how.

~Jennifer McNutt

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Bad Boob

Tara SparksMy cancer has a name. It’s stupid fucking asshole, or in medical terms it’s invasive ductile cancer.

I know it’s the most common.
I know it’s treatable, with little to no occurrence.
I know I will kick those five tumors asses so hard.

I know my husband and family are holding my hand the entire journey. Surgery will be before Christmas as the tumors are growing rapidly, per biopsy results. Radiation will follow as well as 5-10 years of tamoxifen & possible chemo.

I know I have a huge support with all you lovely, lovely fuckers, whom I adore immensely.

Thanks to all who’ve messaged, called, texted & sent cards. 💜

I’m accepting positive vibes, juju, candle ceremonies, laugher, prayers, food, monetary support, your love and above all support.

Peace and love. My friends. Be kind.
☠ xoxo ☠

‪#‎fuckcancer‬ ‪#‎badboob‬

~Tara Sparks

To donate to the Sparks family, please visit the Plumfund Hardship Page.

F#ck Cancer

Heather SnowI had a last minute shoot cancellation on a Sunday in Denver recently, and because of the foliage and quality of light this time of year, I really wanted to be photographing SOMEONE.  It seemed like a crime not to be.. it’s just so pretty outside right now.  So I put out a post on Facebook:  Sexy Denver woman needed.  Let’s make some art.  (It was worded a little better than that, but you get my drift.)  I got so many responses that it was impossible to choose.  I wanted to photograph all of these women.  I don’t do well when given too many choices of anything.  Picking out a restaurant or a meal that I want takes FOREVER.  SO needless to say, by Friday evening, I was still going back and forth, but I had finally decided to go with the first person that responded.  It took the choice out of my hands.  That’s when I received a Facebook message from Emily.  To sum it up (poorly), it said: You should take pictures of Snow (aka Heather Snow).  She doesn’t know that I’m writing you this..As you know, she has Leukemia…I can’t think of anything sexier or stronger than Snow and her drip stand, Edward.  

AND.. Decision made!

Heather and I have been making photos together for several years now.  She is a super funny comedian & writer (read her blog!).  She’s six feet tall, and since her last name is SNOW, we took some promo photos of her as the Abominable Snow-woman a couple of years ago, as well as many different headshots over the years.  We always have such a great time shooting together–I’m a big fan.  She learned recently that she has Leukemia (it’s the craziest story.. seriously, read her blog), and has been in the hospital for the last month.  When I say she’s been in the hospital, I mean, she couldn’t leave.  Ever.  Even leaving her room was a huge pain (because her immune system was so fragile).  So, no enjoying the amazing foliage and light I spoke of earlier.  To sum things up (poorly again–for real, go read her blog..right now even..it’s so much better), She went through chemo treatments, lost her hair (after trying out a couple of awesome short haircuts), had a major drug allergy (that they couldn’t figure out) which produced a rash over all of her skin, found a bone marrow donor, and got her blood cell count back up enough so that she could be released from the hospital for a short time.  Which brings us to the present.  She is out in the world right now, trying to stay away from germs, and in official remission, which is awesome, because it means that she should be able to have her bone marrow transplant soon.  After which, she will be in the hospital again for another month.

Heather Snow 2When I saw Heather for these photos, she was two days away from being released from the hospital.  She still seemed blown away by all of it.  How randomly it came, how supportive people have been, how some pieces have fallen into place, how difficult it has been.  Her room was filled with cards and artwork, and fake flowers (she can’t have real ones due to GERMS/pollen, etc).  One of the nurses said that it is the most decorated room she has ever seen in that hospital.  A repeat phrase I kept seeing around the room was “Fuck Cancer!”, which seems like a pretty great mantra to me.  Heather told me a lot about Leukemia, and how it turns people’s lives upside down.  How if this had happened to her 5 years ago, she would have been financially ruined.  How people lose their jobs and homes, or don’t get good donor matches, and so end up being hospitalized for much longer due to complications.  Or die.  She said that all that she has gone through is kind of a ‘best case scenario’ (good insurance coverage, family donor match, her body’s response to the treatments).  Which completely blows my mind, because of how awful it all sounds.  I can’t imagine it being worse for people.  She was honest, blunt, and real about her experience.  Which is what I’ve always admired about her.  No filter.

Thank you, Heather for being both vulnerable & strong, by allowing me to capture these images of you during this time.  I think they will serve as an inspiration to those of us watching, people going through it, and to you years from now when you look back at what you fought and survived through.  You are such a bad ass, even in the way you are fighting cancer.  And that is super sexy.  You rocked this shoot.  I hope you are getting to enjoy even just a little bit of the foliage before your transplant.  Fuck you, Cancer!

**Thank you, Averi Trevino for doing the makeup, and for Seddy Gomez & Heather Cameron for recommending her!

~Crystal Allen

To read more about Heather’s story, please visit: Sixfeetofleukemia.com

To donate to the Heather Snow Family Fund, please visit: Give Forward

Dine For A Cure

ScreenshotComedians for Cancer is teaming up with the Leukemia & Lymphoma Society for a charity event to honor 11 year old fifth-grader Alec Kazandjian who is currently battling leukemia, and is being organized by his parents, Janet Tsu, and Man of the Year candidate Hakop Kazandjian. The event will take place on June 5th, 2015 from 7pm-11pm at Indian Spring County Club, S Elmwood Road Marlton, NJ 08053.

If you’re a comedian and would like to perform at this event, please contact Comedians for Cancer directly at ComediansForCancer@gmail.com.

For more information regarding this event, please contact:

Janet Hsu

Project Director
Data & Recruitment Manager
University of Pennsylvania
Center for Health Behavior and Communication Research
3535 Market Street, Suite 520
Philadelphia, PA 19104
Telephone: 215-573-9209

 

Read Alec Kazandjian’s story HERE.

 

MOY

On The Ball

Christopher WaldropHere’s how it was supposed to happen:

The doctor would call my wife and I into his office, which I imagined would be a wood-paneled room lined with books. Maybe there would be a potted plant on the desk, and some pictures. He would rest his elbows on his desk and fold his hands, and, quietly and soberly, say, “Mr. Waldrop, I’m afraid you have cancer.””

And I would say, ”I’d like a second opinion.”

At this point I expect he’d start looking through a list and saying something about referrals, and I’d have to stop him and say, “Doc, you’re supposed to say, ‘And you need a haircut.’”And I would have to explain to him who Henny Youngman is, because they don’t teach the important things in medical school.

Here’s how it did happen:

I’d been in for an appointment about an ongoing pain in my leg. This had lasted a couple of months, and I was tired of it waking me up at night. While he was telling me to turn my head and cough my doctor noticed some other things that concerned him, so he ordered some tests, including an ultrasound and a CT scan. Some other doctors might not have taken the time or been concerned, but he didn’t see any need for delay. My wife and I were on our way home from those tests when the doctor called my wife’s cell phone. In fact we were two blocks away.

“Chris needs to be taken to the emergency room right away. He has a blood clot in his leg. Also he has testicular cancer.””

I know that if he could have had the sober wood-paneled office meeting he would have, but while cancer is slow blood clots have a tendency to cause sudden death. And my diagnosis would play a part in my treatment over the longest three days of my life.

So we turned around and went to the emergency room, where we managed to find a couple of chairs together in a corner. This was a Tuesday, and I would later be told that emergency rooms are busiest early in the week, maybe because it takes sick people a while to recover from their hangovers. After about twenty minutes I was called back by a nurse. We sat on opposite sides of a desk and I was subjected to a routine interrogation. It included taking my blood pressure, and being asked the following questions:

”Are you allergic to anything?”

“No.”

“Are you taking any prescription medications or drugs?”

“No.”

“Do you have any religious or cultural sensitivities we should be aware of?”

“No.”

I made the mistake of thinking this was progress. Instead I was sent back to the waiting room where, after five minutes, I was prepared to offer my spot in line, or at least cash, to anyone who could figure out how to change the television to any show not set in a hospital. Ten minutes later I was called back by another nurse. Progress! She took my blood pressure and asked me some strangely familiar questions.

“Are you allergic to anything?”

“No.”

“Are you taking any prescription medications or drugs?”

“No.”

“Do you have any religious or cultural sensitivities we should be aware of?”

“No.”

And it was back to the waiting room where a kid with green-tinted hair and bright green skin sat listening to a pair of bright red headphones. His problem seemed more urgent than mine, but he was still waiting when I was called back again. This time I was led to an oversized closet with a bed. I was given a gown to change into and a pair of socks with sticky pads on the feet. A few minutes later a nurse came in to take my blood pressure and ask a surprising series of questions.

“Are you allergic to anything?”

“Belgians.”

“Are you taking any prescription medications or drugs?”

“Just baby aspirin and PCP.”

“Do you have any religious or cultural sensitivities we should be aware of?”

“As a Mayan I believe the world ended in 2012.”

The word ”smartass” is now a permanent part of my medical records.

My chest and stomach were then covered with stickers attached to wires that went to a machine that measured my breathing, heart rate, eye color, measurements, pet peeves, favorite television station, turn-ons, turn-offs–—everything, in fact, except my blood pressure, which a nurse would have to come and check every four hours.

Since I was staying in a teaching hospital I was also visited by groups of approximately twenty-seven people in lab coats, all of whom politely asked if they could examine me, which meant hiking up my gown and acting like it was our third date. I haven’t been naked in the presence of so many people since high school gym class, but I didn’t complain. Unlike dodgeball I knew I had a good chance of beating this cancer, and Dr. Coldfinger and Co. were stepping up to be part of my team. I was going to make their job as easy as possible. Maybe I got a little too comfortable. Every time the door opened I hiked up my gown, only to have one person say, ”Whoops, wrong room!”

Apparently ”if you’ve seen one you’ve seen ‘em all” doesn’t apply for certain regions.

I was also visited by a nice young doctor who asked me if I wanted to be listed as DNR–—Do Not Resuscitate. The question set me back a bit. I was certain of my answer. If it was an option I wanted to be Do Resuscitate, Please! It was just the reality settling in. I hadn’t been in a hospital as a patient in thirty-nine years, when I was treated for a condition that, ironically, was a risk factor for the cancer I now had. I’d known I was going to end up in the hospital again eventually. I just didn’t expect to be facing questions of life and death quite so soon, or so suddenly.

That evening I was taken for a spin around the hospital by a nice orderly named Leonard. He was taking me for another ultrasound at eleven thirty at night, and I’m pretty sure he was taking me around the entire hospital just for fun.

In a strange and half-lit room I was gooped up and given another ultrasound in search of the deadly blood clot, which declined to make an appearance, then sent back to the closet for a shot of blood thinner, which the nurse assured me would be “just like a mosquito bite”. She meant one of those prehistoric mosquitoes, with a schnozz like an elephant. And then I managed to sleep, waking only to hike up my gown whenever the door opened, even though the nurses kept telling me they’d use my arm to take my blood pressure.

Later that evening I’d get up out of my hospital bed and go to the bathroom next door. For some reason the emergency room bathroom didn’t have a lock, so as I was sitting there trying to relieve myself the door opened. “Occupied!” I yelled. The doctor who’d opened the door was talking to someone–obviously his need wasn’t that urgent–so he didn’t hear me. He just stood there, one hand on the doorknob, with me exposed to the world. This would be the only time I’d have my gown hiked up that I felt genuinely embarrassed. Finally he turned around, said, “Oh!” and closed the door. I’ll never know who you were, doc, but thanks for the look-in.

In the morning I woke with heartburn, probably because I hadn’t eaten anything in nearly eighteen hours. I thought this meant I needed an antacid and maybe some breakfast. The staff thought it meant I needed an EKG, which meant adhering more wires to my chest. Two weeks later I’d still be washing off sticker residue.

“We don’t want to alarm you,” said the nurse, ”but you could be having a heart attack.”

The only thing I found alarming was that the way she put it could give me a heart attack.

Fortunately it turned out that what I needed was an antacid and some breakfast. This was followed by another shot of blood thinner from a slightly smaller mosquito, and then I was told I was being scheduled for surgery. The original plan had been to perform a biopsy, but the doctors decided that since the source of the trouble was in an easily accessible spot between my legs they’d cut out the middleman–—or rather the manufacturer.

Surgery meant being moved upstairs to a luxury suite the size of a double-wide trailer, complete with a private bathroom, shower, sitting area, refrigerator, and, right across the hall, a pantry stuffed with all kinds of snacks and drinks, from chocolate milk and sodas to yogurt, cheese, and crackers. And a nurse who was professional, courteous, efficient, and who, when she was done with all her tasks, sprawled at the end of my bed and told us how much she was looking forward to going home and having a beer with her country singer boyfriend. I would have loved a beer myself, but, almost as good was having someone come in and talk to me as a person rather than a patient.

Then she left. My wife left too. My wife had been the best source of comfort and stability I could have hoped for, and more. She had gone above and beyond necessity to take care of me, but I now I needed her to take care of herself. I needed her to take care of the dogs. And I needed to crank up “Take The Skinheads Bowling” by Camper Van Beethoven and dance around the room, which I can’t do in the presence of other people.

A week after my orchiectomy I would learn I had an embryonal some-kind-of-noma, with an excellent chance of being completely cured. And half of it was a yolk sac, which made it sound even more like an alien parasite. It was fitting. Whenever the subject of astrology came up a college friend of mine liked to say, ”I’m a Cancer, sign of the crab. I’m two diseases nobody wants.” This made me wonder what cancer had to do with crabs, so I looked it up. Ancient doctors found that tumors, when cut, spread sideways, like a crab. Cancer is of the body, but behaves like an invader.

The prognosis was in the future, though. Alone the night before my surgery I wandered down the hall to a spot the nurse had shown me earlier. My room had everything except a window to the outside. It had been twenty-four hours since I’d seen the sky. I’d been wired up but disconnected from the world. At the end of the hall was a window that looks over a section of Twenty-First Avenue I knew well. I could see the bar where I knew someone was playing pool. I could see the coffee shop where I knew someone was eating red velvet cake and laughing with friends. I could just make out the indie theater where I knew someone had escaped into the silvery darkness of a movie. The avenue itself was an artery pulsing with red and white lights, people illuminating the future. I had been all of them. I was all of them. I don’t want to be the heroic survivor who inspires others. I simply want to live.

The darkness deepened over the world below, but the lights brightened. I wondered if, in the months to come, I would still be as brave as I felt, if I would keep my sense of humor. I knew things would get worse before they’d get better, but I knew they would get better. The first most crucial step was taken because my doctor had been on the ball.

~Christopher Waldrop

See how to share YOUR story with C4C here.

Party For A Cure

SaveTheDateNJ2015 Comedians for Cancer is teaming up with the National Pancreas Foundation for an exciting charity event at Stony Hill Inn in Hackensack, New Jersey on Sunday, June 7th, 2015 to benefit the National Pancreas Foundation and the New Jersey State Chapter. The event will be honoring Dr. Andrew Jennis, and feature music, comedy, food, and cocktails.

For more information regarding the event, please contact Evan Epper at 201-647-2163. (Comedians keep reading.) To purchase tickets or make a donation, please go to www.pancreasfoundation.org

If you’re a comedian and would like to perform at this event in front of a very prestigious audience, please contact Comedians for Cancer directly at ComediansForCancer@gmail.com. Comedians will be needed to perform between 5:00pm and 6:30pm on Sunday, June 7th, at Stony Hill Inn in Hackensack, NJ.

The National Pancreas Foundation provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers and health care professionals. To learn more about the National Pancreas Foundation visit www.pancreasfoundation.org