Childhood Cancer Awareness Month Archives - Friends of Karen

A Survivorship Story: Supporting the Transition After Treatment

admin — Fri, 15 Sep 2023 19:50:00 +0000

Friends of Karen began a pilot program in late 2022 to continue to provide a limited number of supports to children who have gone off formal treatment, but continue to have serious healthcare, social and educational needs. Olivia’s mother Johanna shares more below about how Friends of Karen has helped her family during this crucial stage, after Olivia was treated for Medulloblastoma, a brain cancer that occurs most often in young children.

“Olivia was three years old when she started to vomit all the time and was having balance issues. After several doctor visits with no resolution, we went to the Emergency Room and Olivia had a CAT scan that showed a brain tumor. I felt like my heart just stopped.

It took seven days to find out Olivia had Medulloblastoma, and then she needed two surgeries. The doctors tell you ahead of time about the side effects of the surgery, but we were barely surviving. It was hard to see that Olivia’s whole right side was paralyzed and she could not speak or walk.

I am the kind of person that needs to feel in control and illness isn’t something you can control. It made me look at the future differently, and at that moment my hopes and dreams changed for Olivia. I just wanted her to live. Nothing else really mattered.

While I spent many sleepless nights at the hospital, I got a look behind the curtain at what our life would become. I needed others who understood what we were going through, so I researched resources every night and near the end of Olivia’s treatment I found Friends of Karen. During Olivia’s treatment we received emergency food assistance and help paying COBRA for our health insurance, which lessened our worries. At this point, Olivia had endured eight months of inpatient care, and being discharged carried big emotions and new challenges for us all. We were trying to heal, cope and adjust to our new life while trying our best to parent and help our daughter process the trauma she experienced. I found a play therapist for Olivia, but it wasn’t helping. I had spoken to different counselors myself, but I found I spent so much of each session describing the medical terms or updating the therapist on my daughter’s care that I never got the help I needed.

I was in contact with Friends of Karen social worker Alyssa who suggested the organization’s Sibling Support Program and Olivia was paired with child life specialist Melissa. My hope was that Melissa would be able to provide resources in navigating Olivia’s behavioral changes, and how I could support her transition to living isolated at home. This transition has also been eased by Friends of Karen’s Survivorship Program paying for Olivia to have music therapy to help address separation anxiety and for developmental stimulation.

Melissa is different because she understands the medical procedures and the experiences we had. She helped me to anticipate and best prepare for new experiences and eliminate anxiety. She is a sounding board for decisions I am preparing to make and navigating conversations with Olivia’s care team and advocating for her. She is there to help me understand the issues for Olivia in school, and what our life will look like when the support finishes. We are so grateful for Friends of Karen helping us through this stage of Olivia’s life.”

The post A Survivorship Story: Supporting the Transition After Treatment appeared first on Friends of Karen.

Helping Children Understand Leukemia

admin — Fri, 01 Sep 2023 12:18:00 +0000

Our Sibling Support Program team of four child life specialists and creative arts therapists knows that learning about an illness is different than understanding it.

Often when illnesses are not explained to children in an age-appropriate manner they may fill in the gaps with their imaginations, creating stories that may be even scarier than the reality. To help ill children, siblings and their parents understand how Leukemia affects a child’s body, our Sibling Support Specialists provide an interactive illness education session.

The Sibling Support Specialist begins by explaining that Leukemia is cancer of the blood, and guides in exploring the parts of the blood (red blood cells, white blood cells, and platelets inside plasma) using a worksheet Friends of Karen staff created.

After learning how each of these parts function, the child writes about or draws pictures of the cells in action. The Sibling Support Specialists will often use the book Chemo to the Rescue: A Children’s Book about Leukemia by Mary Brent and Caitlin Knutsson, in tandem with the session.

The next step is to create some “healthy blood.” In a small container we use water to represent plasma, the liquid portion of our blood. Then, we add two different colored beads; red (red blood cells that transport oxygen) and white (white blood cells that fight off germs), and a jeweled sticker to hold things together like platelets that help our blood clot.

Then we make a sample of “unhealthy blood” that is the same as the healthy blood but has one major difference – there are Leukemia cells represented with small balls of tissues. Once the tissue balls are in the water they enlarge and take up space.

This represents how Leukemia cells multiply rapidly and minimize the space for the other healthy blood cells to do their job, resulting in side effects like, being tired, bruising easily, and getting sick more often. Friends of Karen Sibling Support Specialists complete the session by explaining how chemotherapy and radiation can help get rid of the Leukemia cells. We will often give children the opportunity to “act like chemo” by removing the tissues/Leukemia from the blood.

The post Helping Children Understand Leukemia appeared first on Friends of Karen.

Siblings Committed to Helping Others

admin — Fri, 19 Aug 2022 12:14:10 +0000

Friends of Karen Board Member Marisa Carson-Bibens
“Thirty-two years ago, the day before my 16th birthday, our lives changed forever when my sister Erika was diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of 13. Our life was a rollercoaster ride for two and a half years with daily visits to the hospital for chemo treatments, checkups, and lots of visits to the emergency room.

Fortunately, our mom was introduced to Friends of Karen and all their wonderful resources. Not only did Friends of Karen assist my mom financially, but they also provided her with a supportive social worker who was able to gently guide her through the nuances associated with a life-threatening cancer diagnosis for her child.

I am happy to report that my “little” sister is now 45 years old, a cancer survivor and thriver, and founder/CEO of The Brain Bodega, an online tutoring and mentoring company which focuses on critically ill children.

As the sibling of a cancer survivor, I am inspired every day by her journey and strength. Inspiring others and being able to pay it forward have become a priority in my life. As a result, I chose to pivot my career and now work by Erika’s side as her COO and as an Academic Mentor for some of our remarkable students.

I have also come full circle, 31 years later, as a proud board member for Friends of Karen. There is no better feeling than sitting in a board meeting, or on a bike in FoK’s Journey of the Heart ride, knowing firsthand that your decisions and actions are impacting the lives of children, their siblings, and their families each and every day.”

– Marisa Carson-Bibens
Friends of Karen Sibling and Board Member

The post Siblings Committed to Helping Others appeared first on Friends of Karen.

Why Riding is so Rewarding

admin — Tue, 16 Aug 2022 16:19:23 +0000

“I have supported Friends of Karen by riding in the Journey of the Heart Bike Tour since 2013. I ride for the children, their families, and for me.

Obviously, the children and their families need all the support they can get. They are dealing with life-threatening illnesses that tear at the very fabric of their family life. Every year, we are fortunate enough to hear firsthand from a family member of a Friends of Karen child speak at our dinners during the ride. They describe the trauma of being in that situation and the lifeline that Friends of Karen provides.

They receive support for the siblings, school supplies, medical payments, and social work for the families. They make coping with this awful situation palatable. For me, I feel it is my duty to give back, to do something that truly matters. My reward, and it is truly a gift I give myself, is that I know I am making a difference. Also, the camaraderie that all participants share is unlike any other feeling I have ever felt. That feeling has not diminished in all the years that I have ridden for Friends of Karen. I ride because I can and because I could not dream of missing the experience. Join us and see for yourselves!!!”

– Richard Feldman

The post Why Riding is so Rewarding appeared first on Friends of Karen.

A Father’s Story

admin — Mon, 15 Aug 2022 19:11:14 +0000

Manuel is the father of 14-year-old Rashelle, who recently completed treatment for Rhabdomyosarcoma, a disease in which cancer cells form in muscle tissue. Rashelle was diagnosed in 2021 and relapsed in July 2022 after this article was written. The family lives in New York City.

“When you hear the words, ‘your daughter has cancer,’ your world turns upside down. I couldn’t believe it. After the news, the doctors gave me all that information about the illness and about the treatment. They tell you you must travel to the hospital three or four times weekly for chemotherapy, checkups, blood transfusions, etc. At home, you must pay attention to side effects or fevers. It was overwhelming.

Then, you arrive home, still in shock, looking at the mail and seeing the bills. I couldn’t sleep thinking, ‘how am I going to do this?’ I am a single father and Rashelle’s mother, Emilia, lives in the Dominican Republic. I have family in New York, but everyone is busy with their jobs and lives. Suddenly I couldn’t work anymore because the idea of leaving Rashelle alone at home or in the hospital was unimaginable.

I kept thinking, ‘how would I pay the bills if I couldn’t work? What happens to others in my situation? How do they manage?’ On top of all my worries, things are a little more complicated for me because I have hearing problems and my primary language is Spanish. I explained my situation to the hospital social worker, and she told me to call Friends of Karen because they would help me.

I was so relieved when Friends of Karen paired me with social worker Natalia, who speaks Spanish fluently. Natalia is like an angel. It is not only about the financial assistance Friends of Karen provides, but Natalia also cares and always made sure that we are okay. Natalia made sure we could speak on video calls so I could read lips and we texted every week.

From the first time we connected, Natalia made me feel comfortable. During our first video call, she reassured me that from now on Rashelle’s health will be my only concern, and Friends of Karen will help take care of the bills. When Natalia asked me to send her the bills for our rent, electricity, and cell phone, I got quiet for a minute because I got very emotional. Friends of Karen took a weight off my shoulders, and I felt relieved. Because of Natalia’s work, Rashelle always had what she needed during her treatment, from clothes to a new bed.

Natalia also ensured that Rashelle received emotional support through other programs at Friends of Karen, including one-on-one sessions with the sibling support specialist Naomi and participating in the virtual teen groups. Without Friends of Karen, we would have lost everything I had worked for, including the apartment where Rashelle grew up. We felt safe because we knew Friends of Karen was there to help us. Natalia knew how to guide me through any question, concern, or problem; and how to find us resources. She took the time to be there for us every step of this journey.” — Manuel

The post A Father’s Story appeared first on Friends of Karen.

When Treatment Ends, New Challenges Begin

admin — Sun, 01 Sep 2024 20:36:56 +0000

Ty was 4 years old in June 2021 when he was diagnosed with B cell Acute Lymphoblastic Leukemia, a type of blood cancer. He has completed his course of treatment and is in the survivorship phase of his illness journey. Survivorship is the period after treatment including long-term follow-up for health issues and addressing remaining emotional and psychosocial issues.

Ty’s mother Samantha shares how their family of five -Ty, his six-year-old sister Ellyot, younger brother Bodhi and Ty’s father Aaron – are navigating the aftermath of treatment on their lives and new issues that have arisen during this phase.

“My first reaction when Ty was diagnosed was complete and debilitating shock. My only concerns were how to help Ty get better and how we would manage our life, especially with Ellyot at home.

Our family reminded us to think of questions to ask the doctors, but when you have no experience with cancer you have no clue what to ask. Then at the hospital everyone is talking at you a mile a minute as your whole world is turning upside down.

As time passed and Ty was undergoing treatment our concern became his social development. He was a social beast that was outgoing and loved making friends and now he had to be isolated, especially since this was during COVID. We also realized that Ty’s diagnosis would have an impact on his sister Ellyot beyond the logistics of our day-to-day life during his treatment.

I am grateful that my sisters did some research on the internet and found Friends of Karen so that we could all get the support we needed. Our Friends of Karen social worker Beth made sure we had help from the organization to pay for transportation to the hospital and Ty’s illness-related co-payments. She also connected us to Jen, a Friends of Karen child life specialist, to address Ty and Ellyot’s emotional needs.

This has been especially important since Ty rang the bell when he completed treatment. Once it was done people expected to welcome us back and assumed everything would go back to normal. But it’s not like you snap your fingers and you’re back to your pre-cancer world.

During this survivorship stage new issues have emerged as Ty has anxiety stemming from the trauma of treatment. For three years he was out of the world he knew, had zero control over his body, and experienced so much pain. He was always mature and wise beyond his years, but now so much time spent in the hospital left him playing catch up physically and socially with his peers. All of this affected his confidence and sense of belonging.

Ellyot has also struggled as she was just three years old when Ty was diagnosed. Back then she was very attached to Ty, so when he got sick and was not at home it was like half of her was now missing. She also was thrust into Ty’s shadow as we had to focus on his getting well, which left her with nothing to call her own. Jen worked with her to explain Ty’s illness at her age level, something we did not have the tools to do. Jen is also helping Elly with the separation anxiety, feelings of jealousy and other emotional impacts that we’ve been told are typical for siblings. Elly’s time with Jen is something that is her own and just for her to talk about things that are bothering her and she learns ways to cope. Jen also sends me a write up of each session with the kids and suggestions of ways Aaron and I can help them.

I can’t imagine what our lives would have been like without Friends of Karen. It is a good feeling to know we are not alone when we are struggling, and that Beth and Jen are there to share a different perspective on things.

Friends of Karen gave us the valuable resource of ongoing support for these emotional issues throughout the phases of Ty’s illness. That is really something because no other organization offers that depth of support to families dealing with their child’s life-threatening illness.” – Samantha

The post When Treatment Ends, New Challenges Begin appeared first on Friends of Karen.

Paying it Forward

admin — Tue, 24 Sep 2024 17:17:39 +0000

When their five-year-old son, Taylor, was diagnosed with Non-Hodgkin’s Lymphoma in 2012, his parents Ron and Kesa were at a loss. How were they going to manage when Kesa had to give up her job as a human resources analyst to be Taylor’s primary caregiver?

Like so many parents, Ron and Kesa didn’t know what to expect or what they were going to need. Then their care team at the hospital where Taylor was being treated introduced them to Friends of Karen.

As Ron explains, “Friends of Karen speaks to you face-to-face. Marla, our social worker, asked us ‘How are you doing?’ ‘What do you need?’ ‘What can Friends of Karen do to support you?’

Besides covering mortgage payments, medical bills, travel expenses and utilities, Marla helped Ron and Kesa get on solid footing so they could focus on taking care of Taylor, and his then 13-year-old brother, Tilar.

“I can’t imagine not having Friends of Karen when going through such a life-changing event,” asserts Ron. Taylor, who ended his treatment in 2015, is now thriving. He recently graduated high school and is college-bound, with plans to study engineering.

Ron appreciates that not all family stories have the same outcome as his. He is grateful for the help that he and his family received because he “knows what it feels like to be overwhelmed financially and emotionally.”

That’s what motivates him to pay it forward through his active support of Friends of Karen. In addition to making his own generous contributions, he takes full advantage of his employer’s matching gift program to increase the impact of his own giving. His support is not only financial, but he actively spreads the word among his friends, family and business associates, sharing the story of the ‘amazing things’ Friends of Karen did for his family.

When Ron reaches out to support other parents, he reassures them, “At a time when things seem very dark, keep in mind there’s a family-friendly support system in Friends of Karen, a pillar of help I will never forget.”

The post Paying it Forward appeared first on Friends of Karen.

Social Workers’ Perspective on Childhood Cancer

admin — Wed, 25 Sep 2024 13:54:13 +0000

Alyssa and Melissa are the two newest social workers at Friend of Karen, having joined the organization two years ago. They share their perspectives on working with children being treated for cancer, and their family members.

It is an honor to support children with cancer and their families and bear witness to the strength they exhibit and experiences they face. We are dedicated to being by their sides and it is a privilege to work with them.

As Friends of Karen social workers, we recognize that assisting the entire family through their challenges is critical to how they continue to manage cancer within their family. Cancer impacts the whole family in profound ways and in every aspect of their lives. The families we support are fortunate that Friends of Karen works on the principle that every family is unique and that social workers can shape our support to their individual needs.

When working with children being treated for cancer, we consider the length of treatment that can last one to three years, the impact of treatment-related side effects, and the emotional toll it all takes. Families feel comfortable working with us because we remain present at every stage of the child’s cancer journey and build a trusting relationship. We are there when the child is feeling ill post treatment or when a parent needs a gentle ear to hold their pain and concerns. We can even come back and work with them again if their child relapses.

One of the most difficult aspects of cancer is that families navigate constant uncertainty which leads to tremendous anxiety. The anxiety it brings can be everything from the financial strain of paying bills while their caregiver can’t work while they care for their ill child to the outcome of treatment. We understand how their issues interact, so when we address a family’s financial challenges, we also alleviate their stress while creating more time for parents to be with their ill child and other children.

As Friends of Karen social workers, despite having to witness pain and suffering within a family, we are motivated by the ways we have been able to enact change and offer families what they need.

The post Social Workers’ Perspective on Childhood Cancer appeared first on Friends of Karen.

Supporting Children with Sickle Cell Disease

admin — Wed, 18 Sep 2024 14:22:28 +0000

Friends of Karen currently supports eight families whose child is in treatment for Sickle Cell Disease.

September is Sickle Cell Awareness Month and Friends of Karen is marking the month by shining a light on the illness and how we support children with Sickle Cell Disease (SCD) and their families. Two percent (8 children) of the children we serve currently are being treated for SCD, which is a group of inherited disorders that distort red blood cells from their typical round shape into crescent, or sickle, shapes. According to the Centers for Disease Control, these misshapen blood cells can get stuck inside blood vessels leading to episodes of severe pain, serious infections, stroke, or organ damage.

Friends of Karen’s Family Support Program offers children with SCD the same comprehensive services it provides to children with cancer and other life-threatening illnesses. SCD has typically been a chronic illness that is managed over a lifetime.

However, with stem cell transplants and gene therapy there is now hope for a cure. These procedures are difficult as chemotherapy is required beforehand and there are many side effects of the treatment. Stem cell transplants require a donor that must be a matched related donor that is often a brother or sister. Friends of Karen’s Sibling Support Program is vital in providing education and support to siblings and the rest of the family.

“Friends of Karen is the only organization that provides comprehensive assistance to families with a child being treated for Sickle Cell Disease,” Rhonda Ryan, LCSW, Director of the Family Support Program noted. “We provide both emotional and financial support to the family, so they are able to cope and remain as whole as possible. Friends of Karen social workers, child life specialists and creative arts therapists are there for the family during the child’s transplant and gene therapy, and to ensure they have the resources and support they need.”

The post Supporting Children with Sickle Cell Disease appeared first on Friends of Karen.

A Mother’s Story: Cherishing Memories

admin — Tue, 06 Aug 2024 11:25:35 +0000

Angel was 19 when he passed away in September 2023 after being diagnosed with a brain tumor. Angel and his single mother Milagros were paired with Friends of Karen social worker Rhonda during his treatment. Rhonda continues to support Milagros for bereavement support. Milagros shares her memories of Angel and how Friends of Karen helped the family.

“Angel and I had fun just spending time together. He was a good kid who was so full of life. He loved spending time with family. He loved music, dancing and playing basketball. I would describe him as charming. He made an impression on everyone he met, and he always had a smile on his face.

When Angel got sick and was in the hospital, he stayed positive and strong and handled his illness with such grace. My main concern was taking care of him and keeping him happy. I found out that most kids with his cancer don’t survive long. Angel fought for a year and a half and never complained.

I am so proud of how Angel dealt with his treatment. For me it was a horrible time in my life, and asking for help was not easy. I have always been independent, and I find it hard to trust people and talk about my problems. I try to be strong and not bother people with my sadness. My mother lives with me and I have a supportive family, but I always worry that talking to my mother and my family about my sadness would make them feel worse than they were already feeling.

I am grateful for Rhonda. She understands what I’m going through, and I don’t have to explain myself because she has helped families like mine and understands what I am experiencing. It was important to have her there for us during Angel’s treatment because when I was in the middle of it my mind was rushing, and it was hard to think of what to do or what to ask. She never made me feel uncomfortable asking for financial help.

Once Angel passed, the kind of support I needed changed. I was not sure how to get back to work and where to look for work. Rhonda encouraged me and she was always there to listen. I needed to gain the confidence to go back into the world again.

It’s hard not to cry all the time even though I have so many good memories of Angel. It is comforting that Rhonda was there for me when he passed away and that she is still here for me a year later.

I know I need to go on in my life, but it is not easy. I am proud to say I have found work, and I am able to support myself again.

Thankfully, I have Friends of Karen and Rhonda when I need to talk.

Angel loved life, he loved his mom, he loved his dad. We all miss you so much. I love you and there is not a moment that goes by that I am not thinking of you, my baby Angel.”

The post A Mother’s Story: Cherishing Memories appeared first on Friends of Karen.