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Family & Patient Support

Focusing on What You Can Control

By Amanda Baskin, LMSW | Water’s Edge Counseling

Recently, our nation recognized the one-year anniversary of the coronavirus being a part of our daily lives. This anniversary marked many changes – changes in what we wear to protect ourselves, changes in how our stores and restaurants operate, changes in our healthcare. Some of these changes were difficult and painful, bringing about loss and separation – especially for children with cancer and their families, who have experienced fear, grief, and a rapid increase in anxiety and depression. And now, a year later, we have seen another change: apathy.

This apathy stems from hopelessness and helplessness that many are feeling from the ongoing effects of the pandemic. While mental health was discussed often at the beginning of quarantines and pandemic protocols, we are now seeing the prolonged impact of anxiety and depression. Those who have felt despair for months are now beginning to question the point in addressing the issues they face.

The apathy can show in many ways: not keeping up with personal hygiene, not reaching out to others when in need of help, or not making plans or goals for the future. It often manifests as a reluctance to try to better one’s situation, feeling that no positive outcomes will result despite their efforts. This feeling of hopelessness can morph into the simple question of, “Why try if nothing’s going to change?”

Families fighting cancer often feel a loss of control, and the pandemic has served to intensify that feeling. We cannot control the pandemic or how others react to it. Focusing on what is in your control can help to alleviate this feeling of hopelessness, and in turn, apathy. Ultimately, all that is in your control is what you think, feel, or do. It is in your control to get up each morning, put on clothes and wash your face. It is in your control to contact a friend or loved one. It is in your control to set boundaries that protect your time and energy. While the triggering of depression or anxiety may not be within your control, how you handle it is. Breaking down your day into small decisions makes things feel more manageable. Instead of focusing on how to complete a list of 20 responsibilities, focus on one step at a time. This reduces feeling overwhelmed or hopeless, because instead of looking at the 19 things you can’t do, you are focusing on the one you can.

One of the most important things within your control is asking for help. If you or a loved one feel overwhelmed with anxiety or depression, reach out for help. Talking with those around you about your experience can alleviate some of the stress that has built up. As we lean on one another, we also help to lift each other. During this past year, the mental health field has been working to make services more accessible. From telehealth appointments to safety protocols for in-office sessions, there are options available to best address your mental health needs in safe and comfortable settings. Choose today to focus on what is in your control to address your mental health.

 

 

Amanda Baskin is a Licensed Master Social Worker (LMSW) in the state of Georgia. She received her Bachelor of Science in Psychology at Georgia College and State University, and a Masters in Social Work, and a Marriage and Family Therapy Certificate from the University of Georgia. She works for Water’s Edge Counseling in Savannah, GA.

How to Keep a Routine with a Child in Treatment

By Mariah Dantzler, MS

It is important to understand that it may be inconvenient or nearly impossible to keep a routine while a family member is undergoing cancer treatment. But we know that rhythm and routine create feelings of safety and security. The following tips may help your efforts to create a routine within your family during this time.

When a child is first diagnosed with cancer, the parents’ focus is inevitably on getting their child the care and treatment they need. This focus continues through treatment and can last months or even years. Parents also do everything they can to ensure the rest of the family is cared for. However, due to doctor’s visits, hospital stays, and inevitable emergencies, things that had been normal in family life may fall to the wayside as the child in treatment needs to take priority. In order to acknowledge the shift in priorities while protecting the rhythm of the family, consider the following:

 

    • Identify 3-5 lifelines. Lifelines can be close friends, family, or members within your community who will rally around you and take on any task thrown their way. These are people who will help with transportation needs, laundry, lawn care, or whatever needs to be done.

 

    • Create a family mission statement, crest, or logo. You can often refer to this with your family in times of stress or hurt to bond together.

 

    • Try to keep siblings on their schedules as much as possible. For instance, keep them on their sports teams, in their favorite activities, and allow them to continue to have play dates. Rely on your lifelines to work out logistics.

 

    • Dedicate a time each month to have uninterrupted family fun time.

 

    • Keep bedtimes the same.

 

    • Make a chart of things that may change during this time, also noting what will still stay the same. This allows children to anticipate and prepare for inevitable change – but still feel confident they can rely on some things to remain the same.

 

    • Try to honor choices and individual preferences for children in the family in the areas they can control. Allowing them to choose such things as the clothes they wear, the snack they eat, or the television show they watch increases their feelings of having some healthy control of their lives.

 

    • Play with your children whenever you can. Younger children rarely discuss their problems openly, but they tend to show you how they are feeling through play and activity.

 

    • Encourage your kids to still have fun when they can. They need to know it is still okay to experience joy even during this challenging situation.

 

Coping with cancer is never an easy task, especially when a child is the one who is suffering. Just remember, your whole family is in this together, and all of your children need your attention more than anything else. Cleaning and laundry can wait! Love on them, spend time with them, and give all of them hugs just because.

 

Mariah Dantzler, MS is an Associate Professional Counselor who works with children and their families at the Summit Counseling Center, located in Johns Creek, Georgia.

A Witness to Joy

For many people, “December” is synonymous with joy. But for those fighting cancer during the holiday season, joy can be hard to come by. Thanks to our incredible community, CURE was able to add a measure of joy in many unique and heartwarming ways.

It started with holiday parties in early December. In Atlanta, more than 100 volunteers gathered at The Atlanta Event Center and welcomed 113 families to the festivities. There were games, gingerbread houses, crafts, holiday treats, and, of course, Santa stopped by to say hello. Between the patients, survivors, siblings, and parents, nearly 500 people were treated to a very special day.

“Thank you for putting a smile on my son’s face at the Holiday Party. He’s had a rough few months, but he really enjoyed today.”

Santa hopped on his trusty sleigh and hustled to Victory North in Savannah where he spent time with 37 South Georgia families. 176 guests enjoyed crafts, face-painting, treats, video games, and more. It was a joyful afternoon, as one volunteer remarked:

“I don’t think I have ever had as much fun and witnessed such joy as I did that afternoon. I loved that so many people were there, and it seemed that everyone could forget their worries for a few hours and just enjoy.”

Your generosity also allowed us to serve more than 1000 meals to patients and their families during December, including a very special traditional Christmas meal at both campuses of Children’s Healthcare of Atlanta. Just consider the boost that a plate full of turkey, mashed potatoes, and cranberry sauce gave families forced to be in the hospital instead of home for the holidays.

Donors supplied us with stockings, ornaments, pajamas, and blankets which we delivered, giving an extra nudge of encouragement.

Imagine being a parent dealing with the high cost of treatment during the holidays. With the unplanned expenses, there may not be enough to provide Christmas or Hanukkah gifts for your family. That’s where our donors really stepped up and became Holiday Angels. You took their wish lists and filled them all. In fact, there were so many gifts that we had trouble fitting the bounty in our office. Altogether, donors provided gifts for 104 families. Between our little cancer fighters and their siblings, 300 children experienced holiday joy when they opened their gifts.

The words of two families sum up the gratitude of all.

“Thank you to CURE Childhood Cancer! Today we went to their office after my child’s radiation appointment and I picked up gifts for my kids that had been gifted to us for Christmas. I am so excited to see their faces once they open up their Christmas gifts!”

“Thank you so much for your generosity.  You have helped make a difficult situation a little brighter for not only my child battling cancer, but our entire family. Our hearts are overwhelmed with gratitude! May your Christmas be filled with many blessings.” 

None of this would have been possible without you. Thank you for allowing us to spread holiday joy to children and families who desperately needed it.

Timothy’s Road to Health

Timothy is the kind of boy who would never let a little stomachache slow him down. A sports enthusiast, you could often find him with a ball in his hand – usually a baseball or football. But toward the end of 2017, a persistent stomach pain started to take its toll. As the pain’s severity increased, his mother, Sloan, began looking for answers.

“We began at our pediatrician and then progressed to a pediatric gastroenterologist,” Sloan recalled. “After about three months of trying things that didn’t help, the doctor ordered a sonogram.”

The sonogram revealed a tumor near his stomach and liver. Timothy was immediately prepped for a biopsy where the tumor was identified as neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. The diagnosis was a surprise because Timothy was eleven years old, and neuroblastoma most commonly affects children five or younger.

After the biopsy confirmed the results, Timothy had another surgery to add his port and started his first round of rigorous chemotherapy that was to last five months. While the treatment did wonders to shrink the tumor, it also ravaged his body at the same time.

“Timothy went from a healthy boy to a state of malnourishment,” Sloan said. “He was so sick that he got down to 48 pounds, and we had to have a g-tube placed to give him nutrition.”

The next phase of treatment was removal surgery. The chemo had worked to shrink the tumor, and during a seven-hour operation, doctors took out all they could. Because the tumor was wrapped around two major arteries, the surgeon was unable to remove it completely. Once he recovered, Timothy had a stem cell transplant followed by radiation, and then immunotherapy, which is a type of cancer treatment that boosts the body’s natural defenses to fight cancer.

The immunotherapy was particularly harsh on Timothy, and he spent weeks at a time in the pediatric intensive care unit. Through all of the difficult treatments, separation from friends and family, and time away from home, he never complained. Despite missing many days of school, he worked hard and was able to finish the sixth grade with all A’s!

Timothy has been declared No Evidence of Disease (or NED) for ten months. He isn’t quite finished with his treatment. In order to prevent a relapse, he is enrolled in a clinical trial and takes three pills twice daily. He will continue that regimen for another year and a half.

“All-in-all, Timothy is doing great,” said Sloan. “His weight is up to 80 pounds, and he’s looking forward to playing baseball again in the spring. We aren’t sure about football, but we’ll decide on that later. For now, we are just thrilled that he’s healthy again.”

Timothy’s family has expressed gratitude to CURE for helping them deal with the challenges of treatment. The hospital where he received the majority of his treatment was 80 miles from his home, and his stem cell transplant was 300 miles away. CURE was able to help ease the financial burdens of the travel through our family emergency fund – part of which helps with gas and other travel-related expenses.

“We want to make sure the high cost of transporting a child to treatment doesn’t take a toll on a family’s finances,” said Lisa Branch, CURE’s Director of Patient and Family Services.  “CURE is happy to be able to help families like Timothy’s in this way, because a long stretch of highway should never be a barrier to a child’s health.”

Helping Siblings Cope

Erin Nicolas, MS, LPC, CPCS, RPT-S

When a child is first diagnosed with cancer, the parents’ focus is inevitably on getting their child the care and treatment needed. This focus continues through treatment and can last months or even years. It is the natural and logical focus for parents, and even siblings would agree that parents must attend to the sick child. Parents also do everything they can to ensure the siblings are taken care of. However, with doctor’s visits, hospital stays, and inevitable emergencies, siblings are bound to get less attention, and their own struggles to cope with their brother or sister’s illness may go unnoticed. To help siblings cope, it is helpful for parents to know how children process major life events in the first place.

Children cope with major life events in bits and pieces. Within a 20-minute period, they may go from crying with sadness to laughing hysterically at something they saw on TV. Children rarely sit around and ruminate on difficult topics. This behavior can seem erratic and even inappropriate at times, but it is what children do. Children also process through play, not words. It can be difficult to sit down and have a long conversation with your five-year-old about her sister’s battle with cancer, but playing with her will may allow you to convey information better and result in some level of understanding. Play is a child’s most natural and comfortable language, so we need to let them use it to process major changes. Lastly, children tend to focus more on how they are going to be affected by their sibling’s diagnosis rather than how others are affected. This isn’t selfishness. It is developmentally appropriate.

So how can you tell if your child is struggling with her sibling’s illness? Remember that children don’t often tell us their problems. They show us. The first sign that your child is struggling is behavior change. Some children act out to get attention while others may withdraw. Those who withdraw often do so because they don’t want to be more of a burden to their parents. Losing focus and dropping grades at school are also a sign of struggle as well as changes in sleeping and eating habits.

Children are easily affected by their environment so when life gets disrupted by something as big as cancer, children are disrupted as well. They mimic what is going on around them. Another sign of struggle is when your attempts to comfort them never seem to be enough. Lastly, children will often isolate themselves from friends or lose interest in things they used to enjoy.

Helping your children becomes the next challenge. It can be exhausting trying to find time for everyone when you are juggling medical care, work, and the needs of the family. Here are a few tips to help siblings get through this difficult time:

  • Keep the rules the same. There will always be exceptions and special circumstances, but consistency should be a priority.
  • Keep to your routine as consistent as possible. Bed times, homework routines, etc. need to stay the same whenever possible. Consistency makes life feel more stable and secure.
  • Be honest and age appropriate with the information that you share. Younger children obviously need less detailed information, but they do need to know how side effects may affect their sibling. For example, they need to know that treatments will make their sibling more tired and less likely to feel like playing. Allow them to ask questions and don’t be afraid to say “I don’t know.” Remind them regularly that cancer is no one’s fault.
  • Set up regular family meetings to check in. Keep the conversation open.
  • Play with them when you can.
  • Utilize choices whenever possible. Children feel more in control of their world when they are able to make choices, even choices as simple as what snack to pack for school.
  • Keep your kids in as many of their regular activities as possible. They need to know that it’s okay to still have fun.

Coping with cancer is never an easy task, especially when a child is the one who is suffering. Just remember, your whole family is in this together and all of your children need your attention more than anything else. So you may need to put off cleaning and laundry – or ask others to help so you can spend time with siblings.  They will be grateful for your love and hugs.

Hope after Loss

The loss of a child is so unnatural in our society that many parents feel utterly alone in their grief. Since it is such a rare occurrence, most people have no idea how to help or even engage with a bereaved parent. As part of our commitment to support families devastated by childhood cancer, CURE brings these parents together every year at our Weekend of Hope and Healing. During this weekend, families celebrate the lives of their children while attending presentations and workshops designed to assist them in their grief process.

But it is so much more than that. Each year, we hear of new ways lives have been touched as parents of different races, religion, income levels, and ages come together and realize they are not alone. Last month, parents of 51 precious children gathered together to move forward in their grief. Here is just a taste of what they discovered.

Jonathan Day lost his son, Owen, in September of 2017 and found peace during the weekend.

“Whenever I am in a normal group of people, I can stop a conversation or destroy the mood by just talking honestly about my children,” he explained. “But here, I sat in a room with people who know exactly what I went through. I got to talk about Owen without making anyone feel uncomfortable. I found that soul-settling.”

Jonathan also took comfort in hearing that other men share many of the same feelings with which he has struggled.

“The rational side of me understands that cancer was out of my control,” he said. “But the emotional part of me still holds onto the feeling that I failed as a father. My principle job was to protect Owen and I didn’t. It was very powerful to hear that there are other men dealing with that same feeling. I didn’t feel isolated when I was in that room.”

Also in attendance was Trish McKay, who lost her nine year old daughter, Kate in April of last year. She found meeting the parents and learning about their children particularly meaningful.

“I got to make some new friends, share our stories, and learn all about their children,” she said. “And that was the best part, getting to know some of Kate’s new neighbors! I am always wondering about the new things she is doing now in heaven, and for once, I know a little bit of who she is probably hanging out with! They are really cool kids. Morgan, the sassy three-year-old who loves glitter and purple. Alyssa, the sweet fourteen-year-old who danced at her school. Anna-Charles, the six-year-old fashionista who sang Meghan Trainor songs for the nurses. Kian, the two-year-old who charmed the nurses and had an afro bigger than his head.”

We recognize that everyone grieves differently and there is nothing we could ever do to completely alleviate a parent’s grief. Grief is a process and we hope the weekend helps to move people forward wherever they are in that process. When we hear comments like those of Benji Hollis, we are assured that the weekend was meaningful.

“Our daughter, Anna Charles, passed away 4 months ago after a bout with Acute Myeloid Leukemia,” Benji relayed. “Our emotions were, and still are, too raw and we weren’t quite sure if we were ready to attend Hope and Healing. But attending was the best decision we’ve made. It was helpful to meet other parents who could relate to the pain and suffering that we are enduring. It didn’t make our pain go away, but it was comforting to know that we aren’t alone. We got the chance to really get to know some of the other parents, and we look forward to staying in touch with them, as well as seeing them next year. There was definitely a healing factor to the event that we didn’t have before we arrived. We showed up with hope and left with even more.”

 

If you’ve experienced loss, please note the common theme running through all three parents: community. There is something significant about sharing your pain with other people who understand. Whether online or in person, we urge you to seek out others whose similar experiences can help you move forward in your grief. There is hope after loss.

Coping Ahead for the Holiday Season

When you have a child diagnosed with cancer the upcoming holiday season will not be typical of the holidays you have experienced in the past. It is important and extremely helpful to acknowledge that simple fact ahead of time, so you can cope ahead. Coping ahead helps prevent us from being blindsided by our grief.

You can cope ahead by anticipating which situations may be difficult and preparing what you will say or how you will act in these moments.  This may reduce your vulnerability to intense emotions and help you manage your emotions most effectively. The following tips will help you cope ahead this holiday season.

Anticipate Heightened Emotions

For many of us, this time of year presents as a dialectic. A dialectic teaches us that two things that seem like opposites can both be true and exist at the same time. While the holiday season may be a time of joy, celebration, and getting together with loved ones, it can also bring about intense emotions such as anger, sadness, and irritation. Allow yourself the full range of these emotions without avoiding your feelings. Tell yourself that it is understandable that you will feel many emotions and give yourself the permission to respond to those emotions as you see fit. Appropriate responses may include declining an invitation to an annual function or pushing through when there may be positive outcomes to being with people you love. Plan how you want to spend your time and with whom. Coping ahead may be reviewing your holiday schedule and determining which traditions and gatherings are important to you and your family and which ones you plan to decline or eliminate this year. Coping ahead would also include preparing and practicing your response to invitations. For example, you may simply decline an invitation. No further explanation is required.

Set Realistic Expectations

Give yourself a break this year. Cope ahead by asking for help. If you usually host during the holidays, ask someone else to take over this year. Let friends and family know that you and your family may not attend everything this year and/or may leave early if things feel too stressful. Discuss with your family ways that the holidays may be different for everyone this year.

Take Care of Yourself

Cope ahead by making sure to plan time for self-care. Taking care of our physical, emotional, and spiritual self will help us be more resilient during the holiday season. Good self-care also protects us from increasing symptoms of depression and anxiety. Practice healthy eating, regular exercise, good sleep, hygiene, prayer and/or mindfulness practices, and appropriate medical check-ups.

Self-Soothe and Distract

Plan times when you can take a break from the stress of the holidays. Cope ahead by making a list of activities that will distract you, even momentarily, from the realities of treatments and the expectations of the holidays. This list may include distractions such as a movie, coffee with a good friend, or listening to your favorite music. A self-soothing list may include a run, massage, or a hot bath. Cope ahead by pre-planning and scheduling these activities; otherwise they will not happen regularly.

Seek Help

Cope ahead by researching and understanding the signs of depression. Promise yourself that you will reach out for help if you see these signs during the holidays. An excellent way to cope ahead is to research and know where you will go or who you will call if you recognize depression symptoms. Discuss this with your spouse or a close family member or friend and hold each other accountable. If you would like to discuss counseling, please visit CURE’s Counseling Program page for information.

Recognize the Good

Coping ahead to help increase your resilience may include naming three things that went well at the end of each day. Another option may be to list three things that you are grateful for each morning. Including the whole family in this practice may help with surviving the holiday season and who knows, it may become a new family tradition.

By Carleen Newsome, LPC, CPCS, ACS

Clinical Director at The Summit Counseling Center

Transition: How to Successfully Journey Forward

by Elizabeth Record DNP, Mary Batcha RN, and Lillian Meacham MD

Childhood cancer survivors are challenged with many transitions of care in their journey after a cancer diagnosis. First, they transition from a healthy child to a child with a cancer diagnosis. Then they move from a child with cancer on treatment to a childhood cancer survivor who has completed treatment. And finally, they transition from a childhood cancer survivor to an adult survivor of childhood cancer. One of the most challenging transitions for many childhood cancer survivors and their families is the transition from pediatrics to adult based health care. For some survivors, this transition is due to an upper age limit at a pediatric healthcare system, and for others it is due to a geographic relocation for college studies or a first job. It is essential for survivors to prepare to journey forward as young adults who can navigate the adult health care arena.

Below are some suggested strategies to ensure successful transition:

  1. Start early to prepare for this very important transition. Survivors should talk to their pediatrician and their pediatric survivor team. Planning ahead of time, communicating with the current and future healthcare teams, and advocating for their healthcare needs are all very important initial steps.
  2. All survivors should have a summary of the treatment they received. This is typically called a Survivor Healthcare Plan (SHP). This is an important tool as it will outline the potential late effects associated with the individual treatment. It will also have a summary of past testing that has been done and suggest recommended future testing to assess any late effects that may occur as an adult.
  3. It is important for each survivor to have an understanding of the contents of their SHP as each survivor will be the person who advocates for their health and schedules the suggested testing.
  4. Survivors should identify and establish care with an adult healthcare provider for general healthcare needs or concerns. Additionally, survivors should share their SHP with the identified adult healthcare provider.
  5. If available, survivors should identify an adult survivor clinic that is familiar with the Children’s Oncology Group Long-Term Follow-Up Guidelines, which can be found on the COG website. This will assure they are updated periodically on any changes that may alter their SHP. Many adult healthcare providers are reluctant to provide care for cancer survivors as they are not familiar with the recommended guidelines. The Young Adult Survivor Clinic at the Emory Winship Cancer Center is a local survivor clinic focused on long term survivorship care.
  6. Maintain insurance benefits. Most survivors can stay on their parents’ insurance until age 26. However, if that is not possible, it would be important for each survivor to reach out to their social worker or a financial counselor who may be able to assist them as they strive to obtain insurance benefits.
  7. Register for Cancer Survivor Link. This is a password protected, secure, patient-controlled website designed for survivors and providers that will allow each survivor to learn about survivorship, share their personal health information with each of their healthcare providers, and store their Survivor Healthcare Plan. Registration is available on our website.

In Atlanta, patients under 21 years of age can be seen in the Aflac Cancer Survivor Clinic (404-785-1717). At age 21, patients are transitioned to the Young Adult Survivor Program at the Winship Cancer Institute at Emory. The contact for this program at Winship is Mary Batch RN (404-778-3473) or [email protected]

 

 

Managing Scanxiety

The term “scanxiety” commonly refers to the anxiety, worry, and fear associated with post-treatment follow-up imaging.  A follow-up MRI or CT scan months to years after enduring cancer treatment can lead to overwhelming feelings of anxiety in anticipation of the imaging results.  One of the reasons for such anxiety is that parents and children who have undergone cancer treatment have learned, in profound ways, how unpredictable cancer and its treatment can be.

Managing one’s own “scanxiety” is complicated enough for an adult cancer survivor who undergoes routine follow-up imaging; it becomes even more complicated for the parent who is guiding his or her child through the process of follow-up scanning.  Parents often must manage their own anxiety while navigating how to best help their children deal with their feelings.

Given the potentially overwhelming nature of such anxiety, it can be helpful for both parents and children to follow anxiety prevention and reduction techniques during the weeks, days, and even minutes before the imaging takes place.  Here are some ideas for reducing the stress associated with follow-up scanning.

Positive Self-Talk:  When worry or rumination begin to creep into your – or your child’s – mind, remember that checking for recurrence does not mean re-experiencing past trauma associated with the original cancer diagnosis and treatment.  Remind yourself to take each moment as it comes, knowing that you and your child will process new information if needed, when needed.  Try to turn negative thoughts into positive ones by imagining yourself and your child facing any new problems with courage, and resolving them successfully, one day at a time.

A Celebration of Self-Care and Wellness:  Checking for cancer recurrence may naturally lend itself to worrying about the future.  Refocusing your own thoughts and your child’s thoughts on the fact that together you have overcome important past struggles can become a moment of triumph and celebration.  Follow-up scanning can be a reminder of victory rather than a trigger for excessive worry.  Turn the experience into a moment of positive affirmation of your past resilience in the face of adversity.

Laughter – and Smiles – Are the Best Medicine:  Before the scan, plan an event or outing that brings laughter and joy to you and your child.  Sharing a special meal together or scheduling a “field trip” to a museum, mall, or sports event can help redirect your mind and your child’s mind away from future scan results and toward present, happy moments that you share together.  Creating joyful and meaningful memories before the follow-up scan may later serve as a focus and source of comfort to ease worry and fear during the actual imaging process.  Reminding yourself and your child to smile periodically in the face of tension and stress can itself also have powerful calming effects.

Practice Mindful Awareness:  Despite your best efforts to refocus your thoughts from negative to positive ones, and to lighten your mood through laughter and creating happy memories, “scanxiety” may still take hold – in the waiting room, during the scan, or any time before or after the appointment.  When managing your worry or racing thoughts becomes overwhelming, practicing mindful awareness by centering your attention on breathing exercises (taking slow, deep breaths while closing your eyes, relaxing your muscles, and centering your thoughts on how inhaling and exhaling feels) can help shift your attentional focus away from future test results and toward your own control of physical experiences and sensations.  Centering your attention on those things within your control, including your awareness of your own breathing and intentional muscle relaxation, can help you to regain a sense of calm in the midst of potentially difficult circumstances.

Create an Action Plan:  Create an action plan with your son or daughter to manage possible anxiety surrounding a scan.  Talk about your worries and fears ahead of time, and agree together on a plan to reduce stress.  The plan may include practicing healthy habits, like eating and sleeping well in the days leading up to the appointment, as well as specific plans when anxiety may become prominent.  You and your child may want to decide in advance what kinds of happy memories to focus on while in the waiting room, what prayers you may want to say, or how you will refocus attention away from automatic negative thoughts and toward positive ones.  You may want to practice deep breathing exercises and mindful awareness of your physical state prior to the appointment so that you have a go-to tool for calming yourself and keeping anxiety at bay.  Having a plan of what to do in the face of stress will help you and your child feel prepared if you experience expected, or unexpected, “scanxiety.”

Rebecca L. Marshall, Ph.D. is a licensed psychologist and staff therapist at The Summit Counseling Center in Johns Creek, GA.  She completed her post-doctoral fellowship at U.T. M.D. Anderson Cancer Center (Division of Pediatrics, Children’s Cancer Hospital, 2000-2002), and has over 20 years of clinical and research experience working with children and adolescents, and their parents.    

An Invitation in the Mailbox

By LaTressa McVey

I remember the first day I held Janae in my arms. Within her first minutes, I could envision my grandkids, sending her off at college, first day of kindergarten, and her taking her first step. I never imagined that I would not only hold her while she took her first breath, but I would also hold her as she took her last.

I lost my Janae at eighteen years-old, only four years after she was diagnosed with cancer. Months into my grieving, I knew the feeling I was feeling was more than just heartbreak. A part of me died when my daughter took her last breath. I felt like a stranger left in the world with part of my heart missing. Friends and family tried their best to be there for me, saying some things that were both helpful and hurtful, such as:

“She’s in a better place” (There is no better place for her then being in my arms.)

“How are you feeling” (I thought that was obvious – my child has passed away.)

“It will get easier” (It became easier for me to hide my pain from others.)

“Is there anything I can do for you” (I don’t even know what to do for me.)

I felt as though maybe I was grieving wrong. The world is telling me I would get better… but when?

Then an invitation arrived in my mailbox from CURE inviting me to “CURE Childhood Cancer’s Annual Weekend of Hope and Healing.” Out of pure frustration with myself and my grief, I decided to go. I needed to see others like me. I needed to see them healing because the world told me it would get better and I did not see better in my future.

I didn’t know what to expect, but I knew what I wanted to see. I was looking for someone like me: someone in pain, hurting, and feeling helpless. I needed to know these things I felt were not abnormal.

My first year at Hope and Healing was somewhat of a haze. I mostly remember that I found myself in the company of others who were dealing with loss. It gave me hope to know that I was normal in my grieving process. I stayed quiet and cried a good bit, but I didn’t feel alone. On the last day we were asked to fill out a survey that asked if we would attend the following year. I wrote, “maybe not” because I felt like I had gotten what I needed.

I thought I was becoming an expert at grieving and braced myself for Christmas because I knew it would be a hard time of year. But December was unbearable without my sweet Janae. I felt all alone again. When I found the invitation to Hope and Healing in my mailbox the following year, I knew I needed to go back.

This second year was much different because I was in a different place. I was more at ease. Unlike the previous year where it took everything I had to keep from crying, I spoke and told stories about my daughter. I actually listened to the speakers and heard what they were saying this year. I was so glad that I could open my mouth and share this time around. After one of the sessions I even met a young woman newer to grief than me. We talked and I felt like maybe I was able to help her.

CURE Childhood Cancer’s Weekend of Hope and Healing has done so much for me that a simple thank you is not enough. To know that I am not alone in this journey has been more healing to my heart than I could have ever imagined. CURE has been a light in my darkest of days. To those who have hosted and attended the event, you have helped me at a time when I felt helpless.

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