{"id":45449,"date":"2017-09-30T09:37:55","date_gmt":"2017-09-30T09:37:55","guid":{"rendered":"https:\/\/www.biphoo.com\/bipnews\/?p=45449"},"modified":"2017-09-30T09:37:55","modified_gmt":"2017-09-30T09:37:55","slug":"caring-children-one-cancer","status":"publish","type":"post","link":"https:\/\/www.biphoo.com\/bipnews\/health\/caring-children-one-cancer.html","title":{"rendered":"Caring for All Your Children When One Has Cancer"},"content":{"rendered":"

Caring for All Your Children When One Has Cancer<\/span><\/strong><\/span><\/h2>\n

Caring for All Your Children When One Has Cancer:- A cancer diagnosis is devastating no matter who receives it, but there’s something cruelly unfair when it happens to a child. And it’s not just the ill children who feel the gut punch that comes with the diagnosis. These patients have families, too. Mothers, fathers and siblings absorb an intense emotional blow while trying to focus all their energies on how to help their sick loved one. With September as Childhood Cancer Awareness Month, it’s worth examining the difficult task parents face in supporting the whole family when one child has cancer.<\/span><\/p>\n

Consider the case of 6-year-old Devin Suau of Framingham, Massachusetts. In January 2017, he was diagnosed with diffuse intrinsic pontine glioma, a rare but aggressive form of inoperable brain cancer. Devin was diagnosed after falling off his snowboard during a family ski trip; what they thought was just a concussion turned out to be terminal brain cancer. His remaining life expectancy was estimated at eight months to two years, and the past eight months have flown by in a wrenching whirlwind for the family.<\/span><\/p>\n

The Michael Mosier Defeat DIPG Foundation reports that DIPG accounts for 10 to 15 percent of all childhood brain tumors. It strikes children between the ages of 4 and 11, and between 200 and 400 children in the U.S. are diagnosed with it each year. \u201cDIPG is an aggressive tumor that interferes with all bodily functions, depriving a child of the ability to move, to communicate, and even to eat and drink,\u201d the organization reports.<\/span><\/p>\n

Although DIPG is relatively rare, childhood cancer is an all-too-common experience for American families. According to statistics from CureSearch for Children\u2019s Cancer, a national nonprofit that supports the search for pediatric cancer cures, 43 children are diagnosed with cancer every day (leukemia is the most common type), adding up to 15,700 kids annually.<\/span><\/p>\n

Although aggregated five-year survival rates from all childhood cancer types have improved dramatically \u2013 rising from a mere 10 percent 50 years ago to nearly 90 percent today \u2013 \u201cthe number of cases diagnosed annually has not declined in nearly 20 years,\u201d CureSearch reports. What\u2019s more, the survival rates for some of these diseases is well below average, and the National Cancer Institute reports that \u201ccancer remains the leading cause of death from disease among children.\u201d<\/span><\/p>\n

The survival rate for DIPG can’t get any lower than where it currently stands at zero percent. “Unfortunately, nobody has survived this yet,” says Devin’s mom, Christine Suau. She says that receiving the diagnosis was understandably devastating for the whole family, signaling the beginning of a nightmare roller-coaster ride. \u201cWe had no idea what we were getting hit with. It was so out of nowhere.\u201d<\/span><\/p>\n

One of the most difficult parts of dealing with this diagnosis is that DIPG has no treatment protocol, meaning that managing care and finding treatment options has fallen to Suau, a stay-at-home mom who used to have plenty of time to take all four of her sons to soccer games, practices and all the other normal things they used to do every day. Suau’s husband, James Suau, works for Yahoo (recently acquired by Verizon) but “he hasn’t been able to work since the diagnosis,” Suau says. “But we are fortunate that his company has been amazing to him.” The upside is that he’s been able to be more involved than if he’d had to be at work every day.<\/span><\/p>\n

Devin has been undergoing radiation therapy, the only currently available treatment for this disease. Radiation can’t cure DIPG, but offers some relief from symptoms. Unwilling to accept that this is the best medicine can do, Suau has been relentless in seeking out other options and discovered a clinical trial at the Harley Street Clinic in London. The family decided to take a chance and flew to London in May. The treatment initially seemed to help, but did not work as well on a second trip.<\/span><\/p>\n

It would be easy for a family to despair in the face of such daunting circumstances, but taking inspiration from the superhero characters that Devin loves so much \u2013 the Green Lantern, in particular \u2013 the family started the #whynotdevin hashtag (why can\u2019t he be the first to survive DIPG?) to help raise awareness of DIPG. A 12,000-plus-member Facebook group bears the same name, and a successful GoFundMe campaign has raised more than $265,000 to help pay for treatment. The greater Boston area has rallied around the family, hosting a 5K road race called Devin\u2019s Dash earlier this month and recruiting members for \u201cDevin\u2019s Army\u201d to look after the family with meals and other support. Boston Mayor Marty Walsh, himself a pediatric cancer survivor, has declared October 27 Devin Suau day in the city. The New England Revolution pro soccer team recently tried to sign Devin to a one-day contract, but he wasn\u2019t feeling well enough to attend the festivities.<\/span><\/p>\n

Amidst all this upheaval and attention, though, are Devin\u2019s three older brothers: Colin, 12, Owen, 10, and Brenden, 8. This rare cancer that\u2019s threatening their brother\u2019s life is also impacting their lives in a variety of painful ways. And that\u2019s the reality of childhood cancer: It\u2019s a diagnosis the entire family lives with, not just the one ill child.<\/span><\/p>\n

Childhood Cancer is a Family Diagnosis<\/span><\/p>\n

The MD Anderson Cancer Center in Houston reports that in the wake of a cancer diagnosis, siblings can feel a number of complicated emotions including fear of what\u2019s happening to their sibling, concern for letting their parents down or being a burden to them, isolation and even some conflict about wanting attention to their own needs. The loss of a regular routine can rock a child\u2019s world, as can the reduction of attention from parents. The shift in relationship dynamics with their sick sibling and any other healthy siblings can be upsetting. In the worst cases, some siblings may actually begin to think the cancer is all their fault.<\/span><\/p>\n

Most pediatric oncology programs are aware of this issue and have social workers or counselors available to help siblings and families adjust to the changes. If you\u2019re concerned about your healthy child or children, talk to a member of the care team. They should be able to refer you to the right resource for support.<\/span><\/p>\n

There are also several independent nonprofit organizations that focus on supporting childhood cancer siblings. SuperSibs is one such example. It\u2019s a program of Alex\u2019s Lemonade Stand Foundation for Childhood Cancer, a Philadelphia-area nonprofit that supports childhood cancer research. SuperSibs emphasizes \u201ccomforting, encouraging and empowering siblings during their family\u2019s battle against childhood cancer,\u201d their website reports.<\/span><\/p>\n

Lisa Towry, director of programs and services for ALSF says that SuperSibs is the \u201coverarching program. Underneath it are several components. The biggest one is the Comforting Care program, which is available to SuperSibs ages 4 to 18 in the U.S.\u201d Children are enrolled in that free program by a parent or health care professional. Once enrolled, the child will receive about eight packages a year that contain informational resources, games, workbooks with writing and drawing prompts and small gifts, all tailored to the child\u2019s age and specific situation. Enrolled children also receive birthday cards and gifts \u201cto make them feel special and remembered on their day,\u201d Towry says.<\/span><\/p>\n

The point of these mailings and the other initiatives under the SuperSibs umbrella and programs like it is to help siblings feel like they matter, to encourage them to process their feelings and to help parents open meaningful conversations with their children.<\/span><\/p>\n

Often, just listening and answering questions is enough to allay a sibling\u2019s fears. The MD Anderson Cancer center recommends being open and honest with siblings and involving them in as much of the treatment process as is practical. This \u201chelps to maintain the connection between the siblings and increases the sense of family.\u201d Making time for one-on-one parent interaction with each sibling can help alleviate some of the feelings of exclusion and isolation. Journaling or drawing their experience can also help siblings work though the complex emotions they\u2019re grappling with.<\/span><\/p>\n

It Takes a Village<\/span><\/p>\n

Involvement from the community may also help. Suau recounts the story of how Devin was leading this year’s St. Patrick\u2019s Day parade in Boston in March and met Mayor Walsh, who understood some of the challenges the family is facing. He made a point of connecting with the older three boys. \u201cHe pulled Colin, Owen and Brenden aside and said, \u2018I\u2019m sure you feel like you\u2019re on the sidelines right now, but when I was little, I had cancer and my brother is the one thing that kept me going every day. You guys are doing such a great job.\u2019 He made them feel so strong and such a part of it.\u201d<\/span><\/p>\n

And it doesn\u2019t have to be a grand gesture from the mayor or a weekly family talk therapy session, either. Simple actions and connections can go a long way toward reassuring your healthy children that they matter just as much as the sick sibling. \u201cSomeone just gave me a great idea to leave notes for each of them. I\u2019ve always put notes in their lunchboxes, but extra notes so that they know I still care and love them,\u201d Suau says.<\/span><\/p>\n

Towry, who was an elementary school counselor in a previous career, says that these simple gestures are bright signals that cut through the noise. \u201cWith the chaos that ensues after a diagnosis, it\u2019s hard to keep everything straight. You\u2019re putting out the fire that\u2019s right in front of you and the other parts fall by the wayside until you have more time.\u201d Still, she says \u201ccarving out even that couple of minutes of one-on-one time with the sibs and just asking how they\u2019re doing, and listening,\u201d goes a long way. \u201cIt doesn\u2019t have to be an elaborate outing. It doesn\u2019t have to be a big expensive toy. What the research finds is just being asked how you\u2019re doing and having someone listen to your thoughts about the cancer\u201d helps.<\/span><\/p>\n

And these discussions shouldn\u2019t be limited to just the cancer or the sick sibling. School-aged children \u201chave other things going on like school and friends and all those fun things you want to talk to your parents about. So I think just having that one-on-one question of ‘what\u2019s happening with you? How are you?’ and letting the sibling talk, it helps them feel heard and very supported,\u201d Towry says.<\/span><\/p>\n

In supporting both your sick child and healthy children, the bottom line has to be focusing on what works for your own family and circumstance, Suau says. For example, when she and her husband James decided that they would take the entire family to London for Devin\u2019s treatment in May, the three older boys came along, leaving school behind for three weeks. She says some people thought it was a bad decision to pull them out of school, but for her family, Suau says, it was absolutely the right choice. \u201cWe decided that it\u2019s better for them to see what\u2019s happening and for Devin to have them there. In truth, no one has ever been through your exact situation, and at the end of the day, you have to do what\u2019s best for your own family.\u201d<\/span><\/p>\n

Although being a sibling of a childhood cancer patient is without a doubt challenging, it\u2019s not all negative, the MD Anderson Cancer Center reports. \u201cResearch shows that siblings of pediatric patients can demonstrate positive changes throughout the cancer experience as they undergo personal growth and gain greater independence.\u201d Pediatric cancer siblings also tend to become more empathetic, and the difficult experience can actually strengthen family bonds.<\/span><\/p>\n

And Finally, Coping Strategies From a Reporter’s Own Mom<\/span><\/p>\n

Sandi Mitchell, 72, of Framingham, Massachusetts, steels herself with a deep breath before beginning her story. The retired high school English teacher (who also happens to be this reporter\u2019s mother) lost her daughter, Rachel Kornbau, in 1986 to leukemia. Rachel had been diagnosed at 7 months old, and the symptom that sent the family to the doctor\u2019s office was excessive bruising. Because leukemia is a disease that affects the blood cells, bruising and easy bleeding are common signs. Mitchell, who was living in southern New Jersey at the time, took her daughter to the family doctor, Barry Hoffman, who didn\u2019t like the looks of things. He referred the family to St. Christopher\u2019s Hospital for Children in nearby Philadelphia for further evaluation. The diagnosis was made hours later on September 29, 1983.<\/span><\/p>\n

Immediately, the young family\u2019s routine was thrown in disarray as treatment began. One constant through those first few weeks, Mitchell says, was the daily phone call from Hoffman. She credits him with giving her some useful strategies for helping her two other children \u2013 David, who was 9 at the time of diagnosis, and this reporter, who was 6 \u2013 cope with the upheaval Rachel\u2019s diagnosis had created.<\/span><\/p>\n

\u201cI think one of the main things that kind of put us on the right path was Dr. Hoffman. He called every night after his hours, and sometimes that would be 11:30 at night. He would say, \u2018what did you eat today?\u2019 And we went through breakfast, lunch and dinner. And then he\u2019d say, \u2018what did you do with David today? What did you do with Elaine today? Don\u2019t forget that you have two other children.\u2019 That really made an impression, and I realized how important it was that as sick as Rachel was, that she not consume us.\u201d<\/span><\/p>\n

Mitchell says Hoffman\u2019s straightforward questions and practical approach to the family\u2019s survival \u201cset the stage, and we tried to make sure that you were still involved with your activities and sports and music lessons.\u201d Doing so was no small undertaking as she and her husband, Harrison Kornbau, often had to divide and conquer. \u201cSometimes Dad and I would split up to make sure that we went to games and school events. That was very important. I was even a room-mother for a little while, and that meant that I wouldn\u2019t get to go to the hospital for as long on some days, but that\u2019s the way that it had to be,\u201d she says.<\/span><\/p>\n

In addition to being physically present with her healthy children as much as she was with Rachel, Mitchell says \u201cwe also tried to give each of you individual attention,\u201d such as one-on-one outings to the movies or a Phillies baseball game. Emotional support was a critical component, she says. \u201cFinding time to talk to you about what was happening or to answer your questions was really important,\u201d Mitchell says. She doesn\u2019t know how exactly she managed to do that, given Rachel\u2019s grim prognosis. \u201cIt was difficult, but it was a priority. I had to, so I just did. It\u2019s what mothers do.\u201d<\/span><\/p>\n

Maintaining her family through that excruciating three-year period left Mitchell with the conviction that cancer is a disease the whole family experiences, but not one that has to rip it apart. \u201cIt\u2019s important to think of the whole thing as a family affair. You have a sick child, but it isn\u2019t just that child. It affects the entire family. You have to be aware of that and sensitive to that. I think it\u2019s important to let every member of the family know that they\u2019re important,\u201d she says.<\/span><\/p>\n

Source:-\u00a0https:\/\/health.usnews.com\/health-care\/patient-advice\/articles\/2017-09-28\/caring-for-all-your-children-when-one-has-cancer<\/span><\/p>\n

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