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Wednesday, October 29th, 2014
It didn’t take a super power to make 7-year-old Hannah Gorsegner a hero. Her selfless act of shaving her head to donate to Wigs for Kids was enough to earn her the title.
Hannah was always supportive of her younger sister, Natalie, 5, throughout her battle with acute lymphoblastic leukemia (ALL), the most common type of childhood cancer. Natalie is now in remission from ALL, but as a caring big sister, Hannah decided to show her continued support in a huge way.
She and her family visited the New York Stock Exchange last Wednesday for the Arms Wide Open Childhood Cancer Foundation event, Shave 4 A Cure, and Hannah donated every single hair on her head for the cause.
Andrea, Hannah’s proud mom, admitted to The Today Show that when Hannah first approached her with the idea, she was hesitant. It can be hard for kids to understand what a wonderful thing Hannah was doing, and Andrea didn’t want Hannah to be the subject of teasing.
But Hannah was resilient, and kept telling her parents how she didn’t care what anyone else said or thought. With their support, Hannah went through with her decision to donate her hair.
“For Hannah in particular, I think this was a life altering experience for her,” Andrea told Parents. “Every part of her body felt as though she needed to do this to help other kids and to inspire others to help, too.”
In front of a crowd filled of 600, Andrea said Hannah smiled through the entire shave. Natalie even helped shave some of her sister’s hair off, and inspired nine other men on the exchange floor to shave their heads as well.
Andrea says she and her husband, Dan, could not feel any prouder of both of their daughters, and that Hannah’s decision is just a testament to her character.
“We always say that Hannah’s heart is bigger then her body, always has been, and I’d bet anything that it always will be,” says Andrea.
When Hannah went to school the next day, accompanied by four businessmen from Merrill Lynch who had shaved their heads with her the night before, her classmates hugged her and showed their support.
As far as what other people can take away from Hannah’s tremendous act, Andrea says people should be inspired to get involved.
“Don’t just feel the warm fuzzies in the moment of reading this or any blog like it—do something to help our childhood cancer community,” says Andrea. “You are one person, yes, but look what my one special, amazing child has done. She is lifting up and inspiring thousands of people. If a 7-year-old can do this with one brave decision, then what is your excuse not to help?”
To learn more about the Gorsegner family’s amazing journey, check out our article from the November issue of Parents Magazine here or check out Andrea’s blog Infinite Love For Natalie Grace.
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Monday, September 29th, 2014
This is a guest post from Allison Laypath, a writer and cancer mom who lives with her husband and two children near Salt Lake City, Utah. She writes the blog Living With Burkitt’s, which documents her son’s battle with cancer. She is also the founder and co-writer of the family travel blog Tips for Family Trips.
How would your family like to visit a place that celebrates Christmas and Halloween every week? Would you like ice cream sundaes with extra whipped cream for breakfast? What about VIP passes to Walt Disney World and Universal Orlando Resort? What if all of this cost you nothing?
For children with life-threatening illnesses and their families, Give Kids the World Village in Kissimmee, Florida, makes this dream vacation a reality. Every year, more than 7,000 children visit Walt Disney World and other Orlando attractions with their families through Make-A-Wish or other organizations. Give Kids the World hosts nearly all of them.
Make-A-Wish partners with Give Kids the World to provide lodging, transportation, meals, theme-park tickets, gifts, on-site entertainment, and ice cream for breakfast (!) at no cost to the wish family. Wish families choose their travel dates and Make-A-Wish works with Give Kids the World to plan the rest.
In 2013, my family had the opportunity to spend a week at Give Kids the World after my 6-year-old son Andrew completed treatment for Burkitt’s Lymphoma, a rare and aggressive cancer. A year earlier, he had been a healthy boy, excited to start kindergarten. In November 2012, he collapsed at school with stomach pain that led to two surgeries, weeks in the hospital, and the diagnosis that every parent dreads.
Cancer was life-altering for our whole family. I dropped everything to be a full-time cancer mom, my husband struggled to focus at work, and our then 8-year-old daughter Madeline often felt forgotten during six months of intense chemotherapy and frequent hospital stays. When Make-A-Wish granted Andrew’s wish to go to Disney World, it was a victory celebration for all of us.
At Give Kids the World, gifts for both Andrew and Madeline were delivered daily to our private two-bedroom villa. (That’s our villa in the photo, where the cheerful sign was just one of many ways we felt welcomed.) We often left Disney World early so we wouldn’t miss celebrity meet-and-greets by the pool, photo ops with Mickey Mouse, pony rides, or a life-sized game of Candy Land. Everything at Give Kids the World–from the playground to the pool–was built to accommodate wheelchairs and other special needs.
The best part about Give Kids the World was that everyone there understood what we had been through and they celebrated with us. Every family at Give Kids the World has a child with cancer, heart disease, or other serious illness. For most, Give Kids the World is a brief escape from a life of doctors, hospitals, procedures, and astronomical medical expenses.
Give Kids the World Village hosts these families the help of generous donors and volunteers. Everywhere at the resort, smiling volunteers serve food, entertain guests, and assist in other ways every day. We felt blessed by their kindness, and we hope to return to Orlando to give back to Give Kids the World as volunteers. (Anyone over age 12 can volunteer as part of an Orlando vacation or on a long-term basis.)
Was the Make-A-Wish experience at Disney World wonderful? You bet. As wonderful as it was, though, the overflowing spirit of support and generosity we found at Give Kids the World Village was even better.
Andrew is a healthy 7-year-old today. His cancer has been in remission for over one year and he has no lasting complications. Andrew enjoys school, friends, and LEGOs, and is learning to play basketball.
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Monday, September 15th, 2014
We continue to bring attention to Childhood Cancer Awareness month with another story from a parent who has been affected. (Last week we featured a post from Stefani Healey, the mother of Brooke, who died of a rare form of brain cancer last September.) This post comes from Deborah Schwartz, whose son Eli is currently being treated for leukemia. We’re happy to say that Eli is feeling well and just started second grade, though he will continue to be treated twice a month until the summer of 2016.
It was February 8, 2013, but it feels like yesterday. I was leaving the supermarket at 10:30 a.m. when a call came in from my son’s school. It was already snowing hard as I got in my car; the Northeast was bracing for a blizzard.
The school nurse called to let to me know that my 5-year old son Eli’s gym teacher noticed his neck was quite swollen, and that I should come get him and bring him to his doctor right away. I drove straight to school with a car full of food and snacks to stock the house for what I thought would be a few fun days playing in the snow and hanging out inside.
When I got to school I found Eli looking somewhat unsure about the concern he was sensing from the school nurse. My heart started to race. His neck looked like a linebacker’s. How could I not have noticed? I called my daughter to the school office and called ahead en route to our pediatrician.
With the snow getting heavier outside, the doctor’s office was quiet. We went immediately into a room and in came the doctor. She looked, felt his neck, did a strep test, asked Eli how he was feeling and then left the room for a minute. She came back in with the senior doctor in the practice, which is never a good sign. The senior doctor examined Eli and a serious look washed over her face. I began to feel the panic set in.
The doctors asked me if I could please come with them into the other room, as the kids waited for a minute. She thought it might be cancer. “Excuse me, but what did you say?” A chill went through my body. They called ahead to Yale-New Haven Hospital for us, telling them to expect us within a few hours. I was in a daze, going through the motions, I had no idea what was happening, but off we went.
Now shaking and crying, I tried to pull myself together for just a few minutes, thinking that none of this made any sense, I was just at the grocery store. I collected the kids and called my husband who was in Vermont, already stuck in the blizzard. I called my parents who immediately got in their car. I went home and dropped my daughter at my neighbors, tears pouring out of me: “Can you please watch her while my parents are on their way?”
I packed a little bag of stuff for Eli and myself and got back on the road. With the blizzard in full force the roads were moving, but it was slow and all I wanted was to be there, it’s like time stood still. I looked in my rearview mirror and saw Eli’s unusually swollen neck. I just don’t know how I did not notice–my own child, right in front of me, every single day. How can I not have seen it?
We pulled into the children’s ER–they were expecting us. The first doctor came in to check on Eli. Unsure where all of this was going to lead us, we were both nervous and it showed. My heart was breaking as he was poked and prodded by kind, but unfamiliar faces. They started an IV, so that if they needed to take blood from him again he would already be accessed. He was as brave as he could be while entering a world of the unknown, he didn’t like how it felt and neither did I.
While we were waiting for results of the and X-ray and CAT scan, my father, who is a radiologist, finally arrived. Aside from his emotional support, it helped to have him there to make sense of the medical talk.
Eli had Lymphoma, but that was just the beginning. The next step would be a procedure to assess his lymph nodes, and determine whether the final diagnosis would be Leukemia and not Lymphoma. The blizzard was in full force and we’d have to wait a few days to get the answers we so desperately needed.
That night we were admitted to the hospital. While Eli was in bed, I paced the hallways in a fog. They were an unknown maze of colors and doors; the faces, sounds and smells were unfamiliar. How did we get here? We were supposed to be home sleeping peacefully in our own beds. But we weren’t, and wouldn’t be for quite some time.
The next few days of rounds with doctors, fellows, residents, nurses, a social worker and childcare were a blur. I barely slept or ate. I sat on the floor of the hallways at 2 a.m. and wept. I called close friends and family and started to fill them in on what little we knew.
We were finally able to go home for a couple of days only to turn back around when we found out that it was in fact Leukemia, officially called T-cell Acute Lymphoblastic Leukemia, which was in 37% of Eli’s bone marrow.
As a parent, I have always felt that it was my job to protect my children, and that if we watch out for them, take care of them, teach them to be good people, it would just all work out. Cancer wasn’t in the plan (not that it ever is). I was unsure I was strong enough to handle it not just for myself, but also for Eli and my family.
We took our place at the starting line of treatment, which included chemotherapy, six to eight months of active treatment with bi-weekly visits, followed by two to three years of maintenance and twice monthly treatments and checkups.
Anyone with a loved one who has gone through chemo knows that it is just horrible. Eli went through numerous additional procedures, which included him getting a port, or “button,” that will remain in his body for the next few years. The doctors went through the list of side affects, and for the most part, the experience turned out to be as awful as they warned.
We stayed in the hospital for 10 days to get everything started. I wanted to spare him the pain, but also wished for it to all move faster, to know he was further away from the disease and closer to having a normal life again, whatever that means.
I would not leave his side for as much as people tried to get me to. I walked the halls in the late hours of the night worrying about what this all meant to him and to all of us.
And so our travels back and forth to Yale began. A 45-minute drive that felt torturous. Eli hated going and was terrified when they had to access his button. He screamed and cried. He threw up a lot. I kept towels and wipes everywhere. He was tired. We were all tired. The doctors tried to manage his nausea with more drugs. The names of drugs I learned in the first month made my head spin: Peg Asparaginase, Vincristine, Bactrim, Zofran, and the list goes on.
After the first month of induction they tested Eli’s bone marrow again. This would determine the course of the next phase of treatment. The drugs did their first great job and he was put in the low risk category and would not need a bone marrow transplant or radiation. I think it was the first time I was able to breathe.
Doctors suggested we enter a study for a drug called Methotrexate. It was a randomized study and Eli ended up being in the group where he would get a high dosage of the drug, while staying in-patient for four days at a time for four cycles.
There’s so much to take in and so many decisions to be made. I’d always researched every single thing that had to do with my kids–looked at food labels, checked for recalls on toys–but here I was determining the fate of my child’s life with no firsthand information, and no way to know I was making the right decisions. We had no option but to release ourselves and take comfort in the incredible care of one of the best hospitals in the country.
The first few months sucked. There’s no other way to put it. It was winter and we were inside a lot. He felt like crap and it made me sad all day and all night. When he was awake I would lie next to him with my hand on his head, since that is the only thing that comforted him. When he was sleeping, I watched him sleep. Making sure he was breathing okay and feeling peaceful.
After the first couple of months, Eli started to get headaches and the doctors decided to do a MRI and then an MRV (of the veins) and noticed a small clot in a vein in his head. Apparently it was one of the potential side effects of the chemo. From that day forward I had to learn how to give him shots twice a day. I gave him approximately 550 shots and it was always a struggle. His arms and legs were constantly black and blue. He lost weight and gained weight. He grew 2 inches over the year. Yet every single day I wonder “how did this happen and how did we get through what we got through so far?” I’m still not entirely clear on the answer.
Usually an avid reader, I could barely concentrate on anything. So when I couldn’t sleep at night I plowed through all of the episodes of Breaking Bad, Weeds, Orange is the New Black, Homeland, and House of Cards. It was the only way I could escape what was going on in my head. I didn’t exercise, I didn’t eat as well as I should have, I didn’t get out, I just couldn’t focus on me. This is probably not what I should have done, but my head was not there.
The only thing that mattered was Eli and his big sister Charlie. She was also feeling the affects of this. She was as brave and strong as she could be. She knew her brother was sick and weak, but she also saw him getting a lot of attention. I showered her with as much as I could give. The school psychologist developed a close relationship with her providing her with a safe place to talk and let out her feelings. I was grateful, since the juggle and struggle with it all was mind-bending.
From day one friends, family and the community rallied around us. Close friends started a bi-weekly meal train and grocery shopping for us. Every week meals came and the love came with it into our home. There were weeks that would go by where we could not get out of the house for fear of Eli’s immune system being exposed to germs.
A text, a call, a hug, a cup of coffee, a warm scarf, a manicure gift card, flowers to cheer up the house, food, Legos (which became his new obsession being cooped up in the house), financial support, and just incredible love is what is getting me through this. With everything big and small that people did for us, the incredible kindness and thoughtfulness overwhelmed me. People who didn’t know us appeared in so many ways, and still do.
The intensity of our lives has been heightened. Relationships have been tested. My husband and I have been feeling the pressure, but there’s no time for drama when you are trying to save your child’s life.
At the beginning of this journey, a friend in the community introduced me to a woman whose daughter had something similar to Eli, and who was also at Yale. She was there for me in every way possible. Her mantra, which I have since adopted, is “forward march.” There is no other way. There are no shortcuts, no quick fixes.
No one ever imagines having to go through something like this with your child. We go back to Yale twice monthly now. It’s become our new normal. Eli lets the doctors check him out, mostly now with a smile since he knows there are games there to play, books to choose from, and amazing people to talk to and play with.
Eli is the bravest boy I know, and I watch him with wonder every day. I am trying to take his lead and be as strong as he is. Some days it works and others it doesn’t. I love to see him smile and laugh and even scream and stomp his feet. He may not remember all of this, and that’s more than okay. I will bear the burden of remembering it, and one day that will be okay too.
This post originally appeared on WomenYouShouldKnow.net.
Image: Stop Childhood Cancer sign via Shutterstock
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Wednesday, August 20th, 2014
Joe DeProspero has two sons and a wife, and he is complimentary birth control for anyone who sits near him in a restaurant. His writing has been described as “outrageous,” “painfully real,” and “downright humiliating.” Author of the dark comedy fiction novel “The Boy in the Wrinkled Shirt,” Joe is also writing a parenting humor book. He will be posting twice monthly and his previous posts can be found here. He currently lives in New Jersey and can be found on Facebook and on Twitter @JoeDeProspero.
Most of us, we bring a Barbie doll or a baseball glove home to our kids and we feel like a hero. But I have a friend who puts us all (or at least me) to shame.
In an article I wrote last December, I talk about my friend Matt Kabel and how he and his wife, Nicole, weren’t letting their daughter Sally’s rare form of cancer, known as Infant Mixed Lineage (MLL) ALL Leukemia, spoil Christmas for their family (and specifically for their two sons). Matt and Nicole threw on festive music, dressed up as elves, and did just about everything within their power to create an environment in line with the Christmases they grew up celebrating. And they did it all with smiles on their faces.
However, we’re now in summer’s third trimester, and a new wrinkle has surfaced in the Kabel family’s fight against cancer. Matt became aware that several friends and organizations had formal requests denied to have the Empire State Building “go gold for pediatric cancer.” Going about it another way, Matt posted to the ESB’s Facebook page, politely and respectfully appealing to have them reconsider. His posts, along with Sally’s photos, were promptly deleted, as were other posts made by fellow parents of children with Leukemia. This lit a fire within a community already well versed in fighting for what they love.
“Before this, the Empire State Building was my favorite skyscraper, anywhere,” Matt told me. “It has been a symbol to our family that, when we travel away, is a sign that we have returned home when it pops into view. Now, when I see it, my heart sinks, almost like finding out an athlete you admire is a fraud.”
Refusing to be cast aside, Matt swiftly maneuvered within his social network to capture the attention of Fox News, which quickly ran a story about the injustice. But it didn’t end there.
The story was picked up by the New York Daily News.
And The Huffington Post.
Sally’s mom, Nicole, was interviewed by CBS and a strong flock of supporters showed up on The Today Show.
Famous rapper Tyga made a public plea to ESB to go gold.
This store in Brooklyn showed their support for the cause with this roadside sign…
And to offset ESB’s refusal to illuminate in gold, Coney Island agreed to do just that.
But despite the overwhelming support and iron-clad case that ESB should show the same support for pediatric cancer that they have for the Democratic National Convention, Teenage Mutant Ninja Turtles, and meaningless sports playoff wins, the group that manages the famous structure’s calendar claims (via a recent statement) that there are simply too many different forms of cancer to accommodate all lighting requests, defending their stance by insisting that, by lighting up for “World Cancer Day,” they have effectively covered all forms of the disease. But I believe parents of kids with pediatric cancer would concur that with children, it’s wholeheartedly different. It just is. And if the Empire State Building wants to stand above us as the true “Heart of New York City,” the people in charge of it would have a heart. And pay the same attention to seriously ill children that it has to fictional, nun chuck-wielding turtles and men who throw balls for a living.
What I find saddest about this situation (aside from the sick children themselves) is the fact that the Empire State Building, an inanimate object loved by many, will now forever be viewed in a different light — pardon the pun. The structure itself has done nothing wrong. Yet, as Matt stated, he will never look at the building with the same reverence and awe that he once did. And frankly, that’s a shame. But what isn’t a shame, what isn’t sad at all is that Matt and Nicole (and so many parents like them) are serving as a powerful example of the lengths a parent will go to in order to defend the honor of their child. There is no cash award, no medal to hang around their necks should they succeed. Just the knowledge that their baby girl is being rightfully acknowledged, and that there is compassion in a world too often tainted by injustice. I truly hope that the Empire State Building comes around. And if they don’t, I hope the Kabels and other families dealing with pediatric cancer know that they are loved and supported by many and are not alone in their fight.
Me and my favorite skyscraper, Matt
For more information on the Kabels’ vs. the ESB, check out their Facebook page.
And to become a part of the Sweet Sally Sunshine community and to receive poignant analysis and updates on Sally’s condition, visit her Facebook page.
* Empire State Building photo courtesy of Shutterstock.com
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Barbie, brooklyn, cancer, cbs, Coney Island, DNC, empire state building, empiregogold, fox news, huffington post, leukemia, New York Daily News, parenthood, sweet sally sunshine, TMNT, TODAY show | Categories:
News, Parenting, The Parents Perspective
Friday, September 27th, 2013
As National Childhood Cancer Awareness Month comes to a close, some hopeful news has surfaced, in that the campaign for an end to childhood cancer is stronger than ever. Results from the National Poll on Children’s Health, conducted by University of Michigan’s C.S. Mott Children’s Hospital, show that childhood cancer is the top priority for children’s health research among adults in the U.S.
Here at Parents, we’ve been writing about childhood cancer throughout September. And while the month may be ending, the dedication to cancer research and awareness doesn’t seem to be waning. So how can you help kids lead healthier, longer lives all year? Read on for ways to make a difference in the lives of children with cancer.
Make Your Voice Heard
Participants in the National Poll on Children’s Health have already brought attention to childhood cancer by voicing their concerns.
“Getting people involved in research, whether they’re adults or kids, is critically important to advancing medical care,” says Matthew Davis, M.D., director of the C.S. Mott Children’s Hospital National Poll on Children’s Health.
“This [report] highlights the tremendous importance of sustaining and even expanding the national level of research around children’s cancer that has been threatened by recent federal budget cuts and recent downturns in the economy,” Dr. Davis says.
Many obstacles are keeping childhood cancer research from advancing, but reports like this can spur lawmakers to act.
“Society needs to recognize that there should be a resolution to the frustrations among the pediatric cancer community that they can’t always get a drug available to try to help a child,” says Larry E. Kun, M.D., clinical director and executive vice president chair at St. Jude Children’s Research Hospital. “It’s a given in adults, but because of the relatively small cohort [of children with cancer], it’s very frustrating for us.” But, he notes, even if the number of children with cancer is relatively small, “it seems very large when it’s a child you know or a child of your own.”
Dr. Kun suggests seeking out advocacy groups in your area where parents are working toward legislative support. Make a phone call, send an email or start an online petition to let your state representatives know that childhood cancer should be at the forefront of medical research.
Do Your Homework
Donating to worthy causes is one of the simplest ways to help those in need. But sadly, not all organizations are what they seem to be. Make sure any organization that receives your donations has a strong history of helping others and giving funds directly to research and medical care. Dr. Kun recommends donating to organizations with specific expertise in pediatric care for children with cancer, and with a large number of highly trained subspecialists. To assess a charity you’re interested in helping out, check out Charity Navigator to ensure your money is going to the right place.
Use Your Talents
You don’t have to have a background in medicine to make a difference for children living with cancer, nor do you need a huge pocketbook. Some of the best childhood cancer awareness efforts function on a grassroots level.
Organizations like St. Baldrick’s are famous for their head-shaving events that promote solidarity and awareness, but they also encourage people to do what they do best in raising money, whatever that may be. Organize a fundraiser block party or rummage sale, or start a social media campaign. And even if you and your children are in good health, the whole family can often participate in studies that will help researchers better understand childhood cancer.
Get the Kids Involved
Kathleen Ruddy, CEO of the St. Baldrick’s Foundation, knows that it can be difficult for parents to talk to their children about peers their age fighting cancer. “But the fact is, kids are smart, and they might have grandparents who have cancer, they might have a neighbor who has cancer, or they might know about it anyway,” Ruddy says. Fortunately, “the beauty of it is that kids want to help.”
Ruddy is always pleased to see children who start clubs at their schools and continue their efforts into college and beyond, but teaching kids the value of helping others can be as simple as reaching out to the local hospital to ask about charity drives or volunteer positions. If you want to put your sweet tooth to good use, Cookies for Kids’ Cancer and Alex’s Lemonade Stand Foundation are two organizations that take a tasty approach to helping kids battling childhood cancer by using bake sale-style fundraising.
Whatever you choose to do in helping raise awareness about childhood cancer, both you and your children can feel good about your efforts.
“Parents teaching their kids that they can be leaders and that they can be part of the solution is really powerful,” Ruddy says. “It cements in them the desire to do good for life.”
Image via Shutterstock
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