Psychosocial Challenges in Caring for a Child with Cancer | Robyn Dillon, LCSW



Thank You Alma and thank you guys for allowing me to come here to speak today it actually is very bittersweet for me to be back here because I grew up in Roanoke I went to Oak Grove Elementary Hidden Valley junior high it was called back then I believe it's now middle school and K spring high school my mom has retired out at Smith Mountain Lake in Bedford and my brother and lives in Dutton and his children go to Stewart's ville schools something like that I don't know anyway so I'm back home a little bit I'm actually in a fun fact I was the one of the very first employees at corned beef and company when it opened on the I was the first hostess they ever had so my claim to fame Roger and I still know each other anyway so I'm here today to really focus on the psychosocial challenges of children with cancer and their families I always have to have a disclaimer I have a lot of talents in a lot of different places public speaking and Technology are not either one of them so we'll see how it goes if not I've got a video I can put in what's the button to push I'm already off damn okay okay we're gonna start with thinking about cancer as a chronic illness although it has acute phases Tippett to it we're when they're diagnosed through the first six nine the first year of treatment where they've seen a lot of hospitalizations a lot of frequent clinic visits we really have to look at it as a chronic illness because it lasts through treatment and Beyond and a chronic illness is really defined as something that lasts a year or longer requires specialized treatments or technologies and causes limitations in function activities social roles in the patients as compared to their healthy peers and that's really what I'm gonna focus on today as Ian and dr. Dunsmore said medical technologies have been come become more refined and effective for children with cancer and a greater number of these children are surviving the diseases that may have once had a really great prognosis but with these survival rate scary issues of adaptation adjustment coping and a general emotional well-being Oh would it a push okay Thank You Alma the treatment as dr. Dunn's Martin also went over it could include surgery chemotherapy radiation bone marrow stem cell transplant plant or others such as antibody therapies that could last for years and years and years and treatment is never a straight line it would be nice if treatment from A to Z you were diagnosed she took some medicine you went to some doctors appointments you got done with treatment you went on with your life but it doesn't happen that way life is not that easy and like with cancer is definitely not that easy i'ma walk away I'm gonna walk over here so we would love to have the child here so it if they could be diagnosed it just kind of has some small upto math ups and downs maybe a fever maybe in the section and they come off treatment that's what we can hope for will be the best-case scenarios but it never happens that way but it doesn't always happen that way we have consider diagnosed and within the first month they do not get into remission and have to go through induction treatment all over again we have kids that are going along with treatment and relapse by their own treatment and go up here and have to go through intensive treatment again and maybe maybe even a bone-marrow transplant we have kids that are always at the end of treatment her to come off treatment and then a few months later relapse and have to start all over at the beginning again again and you know we have some kids who just can't shake their disease and end up going on to palliative care and ultimately into grief and bereavement services that we offer as well so it is the worst rollercoaster ride you could ever be on it has the most loop-de-loops it has the backward tunnels the death drops and just not a linear thing and with a lot of unpredictability the size of social impact of childhood cancer again previous speakers have talked about the physical cognitive vocational aspects of it and I'm gonna focus kind of on the other things that come along having a child with cancer a lot of times we just think about it's the child with cancer but really that's the tip of the iceberg and you've got to look at the entire dynamic the financial the family the social and the emotional and psychological because all of those go in to treating a child with cancer such things as financial stability family dynamics social support psychological well-being can be equally as important as the medical physical and cognitive the quality of going through childhood cancer so financial not many think about the long-lasting financial impact of that a diagnosis has on a family and even the most financially stable family can feel the financial strain of cancer treatment for leukemia standard risk leukemia which is our most popular most common illness that we see in our clinic it's a three year treatment from diagnosis to the end of treatment that is three years worth of treatment the first six to nine months the child is not able to go to school or daycare and usually a parent has to stay home to take care of them and therefore loses one income and that's for a two-parent family if you're a single mom then you're losing your income altogether most private insurances are going to cover about 80% of the total cost of the treatment their coat so that family be responsible for the 20% there are co-pays and deductibles and uncovered costs the costs for leukemia standard or low rates of leukemia ranges anywhere from two hundred and fifty thousand dollars to a quarter of a million dollars you throw in a bone-marrow transplant you are over a million dollars so if the insurance pays 80% and the family's responsible for 20% 20% of a million dollars is a heck of a lot for that pay only to have to be in charge up and not all families will qualify for financial support from the government such as SSI or Medicaid as a secondary insurance and there's also the money that's spent on meals at the hospital gas to drive back and forth through the clinic appointments to the hospitalizations and specialized therapies so say you live in Clifton Forge which is where Alma's from and you need to bring your child to treatment at Ronit Karelian and you need to be there twice a week it's 50 miles one way that's a hundred miles roundtrip or 200 miles per week or 800 miles per month that's the same distance as driving from Roanoke to New York or to Atlanta one time a month that is a lot of gas that is a lot of wear and tear on your car and that is a lot of time that it takes to do that and family we have to take into consideration that families come in all shapes and sizes we have to parent intact families we have divorced parents with joint custody or who are fighting with each other we have a widowed dad raising two kids we have grandparents raising grandchildren we have kids in foster care and residential treatment facilities cancer does not care what kind of family you come from or if you're financially stable or if you have another kid with special needs or if you're dealing with your own medical issues as well it just doesn't care and everybody in the family is affected we often say that childhood cancer is a family disease because because no one in that family goes untouched by that illness and it's especially hard on the siblings especially the siblings siblings may be shipped off to Grandma's house while parents are in the hospital with the sick kid just yesterday was it yesterday just yesterday I was sitting with the parent of one of our patients she is a 21 month old who's in the hospital for five days for chemotherapy for liver tumor and she's got a six year old other child a little boy who was on spring break the dad works construction he's the only source of income so he has to be at work the little boy who was on spring break couldn't be at the hospital with the mom so it was shuffled to a different person every single day to help care for him she has no family in the area she has one sister two days he stayed with a friend of moms who he had never met before and the comment he made to mom was you love the patient matter more than me because you never see me they also feel left out siblings may not be included in family discussions they may feel abandoned or isolated parents could be unwittingly doing this or doing this as attempt to shield that sibling or they simply may not have the time or energy to spend with that sibling and they feel cheated siblings often have to forego their activities we recently had sibling if this fan of as a single mom with two kids both were school-aged kids and the sibling had to give up their place on the soccer team because that single mom could not be at the clinic with the child getting the chemotherapy and being at the soccer practice with the other kids so that sibling had to take a backseat siblings may feel cheated in both time and affection from their parents and jealous children with cancer tend to get showered with gifts and toys in presence siblings can see this had become jealous they also can see that their ill sibling who's not going to doesn't have to go to school and sees this is kind of a perk all the attention is on the sibling everything seems to be revolving around the sick child and any or any one of these or all of these issues can cause a sibling to be depressed or angry or sad confused guilty and act out and a lot of times you guys will see this as school their behaviors they're acting out they might have some psychosomatic issues where they're going to the school nurse because they're not feeling good because they just don't know how to handle their emotions and their parents are having a difficult time having equal sharing equal time with them so please please please be away or if you have a sibling of a child with who school undergoing cancer treatment because they need special attention to so social socially children going through treatment for cancer are greatly impacted a child's job is to play in to go to school both which are social activities but kids with cancer are robbed of this opportunity they're not in school they have a lack of exposure to peer groups they have a loss of contact with their friends they have a loss of Independence they mature at a different rate and have a hard time reconnecting that feelings of being different in feelings of being left out and for these kids there's a whole range of emotion that they can experience most of them are intertwined and overlapping they feel out of control and have so many layers of loss loss of hair loss of Independence loss of contact with their friends or their peers loss of academic status or position on a team loss of abilities base physical and mental they feel betrayed unfairly singled out angry or embarrassed and these emotions do not end at the end of treatment they will stay with this child and the cancer survivor well after they've completed the treatment have returned to school and the emotional scars that scar we think of these invisible or emotional scars are the ones that you cannot see challenges with interpersonal peer and friend relationship is the number one issue that childhood cancer survivors say is their biggest concern I'm going to say that again challenges with interpersonal peer and friend relationships is the number one issue that childhood cancer survivors say is their biggest concern I work not only with the kids going through active treatment from the time of diagnosis to the end of treatment but also fortunate enough to be at our survivorship clinic on the one day a week that we have it so I get to see the kids from the beginning of their treatment until like they forever and the number one thing that they talk about even though the cognitive disabilities that they might have the chemo brain the processing skills the vocational challenges are all there and valid the number one thing that they talked to myself and our psychologists about is their peer and friend relationships how they just can't seem to feel like their peers and how they were they speak of not feeling like they can return to the way they were before they see the world differently they cannot connect to their peers they have a different value the things that they used to be engaged in seem petty and they struggle with feeling connected these scars may be invisible but real and cut deep the child may physically look normal the hair is growing back no physical and no physical limitations like amputation no skew can't see their port-a-cath scar they're not taking any medications anymore for all intents and purposes they are back to normal outwardly but internally they're far from normal they feel different and they're struggling and to be aware this and be gentle with this is it's not something that they can get on with or will get over but we'll need help finding their new emotional normal a debate about using this analogy but I'm going to go ahead they remind me of peanut M&Ms they are pretty and shiny and bright colored on the outside and then they have but they are guarded with their protective coating and on the inside they have some vulnerability that is chocolate and sweet and but deep down they're actually going nuts because they cannot find the way to be normal Alma told me not to use it I'm going to use it anyway anyway so balance so we so we talked a little bit about the rigorous treatment for childhood cancer and the side effects or late effects and we've talked a little bit about the psychosocial issues that also can be present so I want to put them together in a case example so Sara Sara is a teenager who resides with her mom her dad and siblings who are 10 7 and new four-month-old mom just returned to her shift work at Wawa after her maternity leave and dad works construction the seven-year-old sibling has a significant learning disability and some behavioral issues for which she has an after school tutor and counselor as a teen Sara helps out a lot with the younger siblings and it's a role that she really takes a lot of pride in the family only has one car which dad uses for his construction job and then they have to share it for mom's work and any appointments that they may have and Sara's covered by Medicaid well Sara gets diagnosed with a brain tumor and she's had surgery and she was in the hospital for 12 days followed by that she has six weeks of daily radiation every single day for six weeks that's thirty visits after her six weeks of daily daily radiation she is seen once a week in the outpatient clinic or if she needs a transfusion or his ill or has an infection she's also admitted to the hospital for three days once every 21 days more if she has a side effect fever neutropenia infection she takes five pills three times a day they make her nauseous she is weak she's lost weight and eventually needs a g-tube for feeding the feeds run eight hours a day she's hooked up to a machine at home with TPN or insurer running through it she's also scheduled for two days a week of physical therapy and occupational therapy because she's so D condition and she's got one point a week for psychology counseling that's four to five appointments just for the patient every week the sibling has his own appointment for his tutoring and counselor for his learning disability and behavior problem and remember this is a family one has one car that dad needs for work dad is struggling with some depression and in the course of Sara's treatment he is hospitalized for kidney stones he has his own medical appointments as well as his decrease in ability to work we're now up to seven we're now up to about seven to eight appointments a week for this family we have lost an income dad's has lost his income for reduced ability to work and in addition to her physical and medical side effects Sara's experienced some significant emotional issues such as depression low self-esteem resistance to follow instruction she's a teen she's starting to act out she doesn't want to take her medicine she's becoming non-compliant and she is very angry at the dependence that she has on the adults in her life because she physically can't get up and walk across the room to go to the bathroom by herself she has she needs help by a walker or her mom to take her across the hall so looking at this schedule how is she to keep up with school how is she to keep up with her peer and social group how are they gonna pay the bills with mom not working and dad having to reduce his hours due to Sierra's medical appointments in his own medical appointments and the brothers appointments she was disconnected for an entire year during treatment from her school and her peer group and she had difficulty even participating in homebound instruction because she was so sick and she fell behind she had difficulty participating in her physical therapy because she was so weak when she was finished with all of her scheduled treatment she was very very far behind in school and out of touch of her peer group she had long lingering feelings of inadequacy low self-esteem and low stamina she was easily irritated by things she used to find pleasure in and could not find anything in common with her friends and she just felt different from them so several years ago we were able to put together a little video and these this is the voice of the experts I could sit up here and talk to you all days about about my experience being a social worker in attempting or trying to walk alongside the journey with these children and their families but as Juanita spoke so eloquently this morning I don't think there's any better educator than somebody who's actually walked through it so if this works then this works I was actually sleeping like school and so they gave me patience to get drug tested by that i rash until my body wish because just because I've never gotten a dress the last day up they just would and but I'm pretty terrified and I see the I get it I guess until the doctor is talking about surgery origin of the inside I asked yeah not one being tired all the time we're heroes yeah and people tell me that they like your knockers laughter baseball's like bring it Oh lots of good as many bucks like touch and now I'm like I try so you don't do it anybody my life Oh is I yeah the last time you see a group of kids and dependence and I have to step away we actually care and what to do and things like that kind of take that north of that authority to expand so you know it doesn't go through you know everything large that wasn't that and Great Lord and we were coming up at her to a sidewalk come across well this was before right there was a little artist other I think that yeah Oh that's my choice I felt like this my about that because other people and the sheriff [Laughter] because of that people you know I feel bad about that but they were always there pretty I was worried to death about my dog it's amazing my dad was able to provide and that itself isn't in every every other thing weather but these dimensions good get frustrated anything or the second time around it was more isolation you're not your life – and don't care better your friends you want to know who's going out with soon and I know I've done stuff that you know and your white blood cell count is negative we can't they're hunters taken and so that whole thing is impossible definitely I don't want to go – it's just strange to be interested in that place I was scared you know I feel like am i scary like that all that she's scared but I think in the long run you know I was accepting of it today was it not thankful for it it was interesting because their relationship I mean just if it was fun definitely different intuition she had with other teenage people the patients it was just so much more and so I felt like I'll get it both relationships and in the legs all very you know coming out I don't complicated yeah playing really good actually I thought we need or I they're both included in real life it was there's no way to cover up for you Oh I develop cancer and and I pretty much in I No to other organs in relying including my heart here's a treatment they the boxcars we're basically here inject attractive you know your brain a device do this get me back as far as work goes I had to kind of basically and a couple years off the more and the bark at work that once they refrain go but in gold like the way it got to oh I [Laughter] [Applause] it was such a good video we did this 15 years ago and it still gets me but I have the best job in the world I do have to set out some kudos to and mocks niece Caroline who provided the music for this and a little Spotify plug if you go on in Google Caroline and Colin Colin and Caroline best music in the world so she she provided the music for that I don't know how to get to my next slide but so we'll just let this ride out if unless I push this button okay so things to remember and since I can't remember them I'm gonna read them sometimes I think I'll have chemo brain by osmosis so in closing just a few things to remember as I wrap up my portion of the presentation we may not be able to fix all of the issues of a patient with cancer and their family nor is our nor is it our role to fix everything but it is our responsibility not to break them further by ignoring the psychosocial spiritual academic cognitive and social aspects that the chronic illness creates there is no magic pill to give or secret word to utter that will make these emotional or cognitive changes come about instantly it took a while for these emotions and feelings to be created and reinforced and it'll take a while to undo it and to find what is a new normal so create a space of trust and safety allow the person to feel what they're feeling because these feelings are very real real to that kid that's feeling them whether we think they're realistic or not to tell them not to feel a certain way that they shouldn't be upset or they should be doing this is to disrupt the normal process working through these emotions telling them to get over it or they're lucky that they survived it's counterproductive and destructive do not expect any child to return to the exact kid they were before treatment and don't ignore the invisible emotional baggage in scars they are dealing with and lastly allowing a child who has gone through treatment for cancer and who has lingering emotional and psychosocial challenges to struggle academically socially and emotionally when all that is needed for success is the appropriate awareness accommodations and interventions it's really no different than failing to provide a ramp for a child in a wheelchair thank you [Applause] you

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