September 30, 2017
By Anne White
We are coming to the end of Childhood Cancer Awareness Month. I asked a group of moms who are fighting cancer with their kids what they want you to know about their battle. Not everyone will feel this same way, but here is a compilation of our thoughts:
Our kids are the strongest warriors you will ever meet. They didn’t volunteer for this battle, but they step up every day and show the adults around them what courage in the face of adversity and resilience look like. They rarely if ever ask “why me?” and soldier through painful and uncomfortable procedures all in the hope tomorrow will be a better day. They will do anything to get back to a normal life and help us see we can never take a normal day for granted. They have shown us that love and health are the greatest gifts. They are our greatest source of inspiration
Please tell me success stories. I am very sorry you lost your grandmother or dog to cancer, but please don’t share the sad details about them or a child nearby who died from cancer. I understand your loss is painful, but I need to save my energy and try to focus on the positives right now.
Kids with cancer have good and bad days like everyone else. Often cancer fighters are portrayed as super heroes. Our kids are tough and strong, but they need support on the bad days too. They know their bodies better than anyone else, so if they say they aren’t feeling right, please believe them regardless of how good they look. Some of our kids receive their chemo at home and have regrown their hair. They are still immune compromised and fighting each day for their lives while they finish their treatments. Speaking of hair, our kids never get used to losing their hair. They get very attached to their hair when it grows out, and it is a big loss each time they lose it. Maybe you can surprise them with a card or small gift from the Hair Fairy when it happens.
Appearances are deceiving. On social media, we frequently post pictures of our kids smiling. Ads raising money for kids with cancer feature adorable bald kids with huge grins on their faces. Our kids are happy a lot, and as parents we will do anything to brighten their day, but these images are deceiving. In our world, there is also a lot of fear, feeling lousy, pain, sadness, anger, and frustration. There is never ending disappointment for our kids while they sit through long appointments and painful procedures. They miss family, friends, school, playdates, birthday parties, music lessons, church, scouts and sports. We can’t capture those emotions in pictures. At those times, we are comforting our kids. We all want to forget the bad parts, the parts that haunt our days and nights. Please don’t be fooled by the cheery pictures. The reality of childhood cancer is not something you want to witness first, second or third-hand. Imagine trying to calm or hold down your four year old while a masked and gloved adult tries to press a long needle into their chest for a blood draw. Now repeat this scenario weekly. No one wants to remember these moments. The medical professionals have huge hearts and work hard to create a safe, comfortable environment for our kids, but it isn’t all smiles.
Cancer treatment is more than chemo. Life becomes much more complicated after a childhood cancer diagnosis. Chemo, surgery and radiation affect the whole body and can require more and more medical intervention. We schedule more and more tests and meet more and more professionals to try to keep our child healthy. We parent s learn to administer all kinds of medications, supplements and treatments at home. As parents we have to be constantly on guard for any changes or new symptoms, so we can report them to the doctors. We are the first line of defense for our kids. Everything can change in minutes requiring hospitalization. It is hard for the whole family living with this unpredictability. In addition, even the things we take for granted in our daily lives can become hard. Our kids often have to deal with sleep issues, digestive issues and eating issues. Every minute detail has to be attended to. Chemo can make food taste lousy, yet our kids need nutrition to heal. Lots of kids need physical therapy, occupational therapy and speech therapy. These therapies only work if we continue the work at home. Cancer parents wear a lot of hats.
Please don’t second guess the treatments our kids receive or question what they eat. We follow our doctors’ advice and we are happy to get any calories in our kids. We try hard to encourage healthy eating, but it is asking a lot from a sick child whose taste buds are off due to chemo. Please know we are doing the best we can under the circumstances.
There is no “bright side” to a child getting cancer. Adults sometimes say they are glad they got cancer, that it gave them a new perspective on life and helped them appreciate what was important. We are glad they are able to see it that way. There is not one thing that is positive about a child getting cancer. Kids don’t need to reset their priorities and adjust their perspective. Coming face to face with your own mortality at 6 or 7 or 17 is never a positive. Illusions are shattered at a tender age. Our kids, their siblings and friends learn at an early age that parents and doctors can’t fix everything and make it instantly better. Our kids must face the fear of their cancer coming back every single day. It is a lot to ask of them.
Childhood Cancer statistics lie. They say 80% of kids diagnosed with cancer survive. This number is misleading. Survival rates have gone up over the years , but the 80% number simply measures the percent of kids who survive for 5 years. They aren’t all cured. That number includes kids who are cured but also includes the kids who are still fighting after 5 years. That statistic doesn’t include kids who relapse later, develop secondary cancers, or die from complications of treatment years after they are pronounced cured. The majority of kids who survive cancer have health complications from the cancer treatments they received. In addition, there are some types of childhood cancer where there is next to zero chance of surviving. We desperately need more funding for more effective targeted cures, ones that aren’t so damaging. For decades, we have given kids and doctors outdated, barbaric weapons (chemo and radiation) to fight childhood cancer. With adequate funding we can do better. We parents will keep advocating and trying to raise awareness because we don’t want your kids to go through what our kids did.
Cancer treatment isn’t any easier if your child is an infant. Cancer knows no bounds and can strike the tiniest amongst us. Some people say it isn’t so bad because the infants won’t remember things or they don’t know any different. This isn’t true. It is extremely hard because you can’t explain things to an infant, reason with them and reassure them the way you could with an older child. There is no looking on the bright side when an infant has cancer.
Teens get cancer too. Teens are stuck on pediatric wards when they are longing for increasing independence. They long for more time with their friends and a normal life but may have to depend a lot on their parents for help each day. People often forget about teens when they donate toys and gifts to childrens’ hospitals. Every day thousands of teens put their lives and dreams on hold while fighting cancer. They watch while their friends go to homecoming , concerts and make plans for college. They too have big plans and dreams.
Trying to be upbeat and positive all the time is exhausting. We feel a lot of pressure to be grateful and optimistic. We sometimes lie about how we are feeling. We get angry, sad and some of us cuss more than we’d like to admit. We may lie and say everything is ok because we don’t want to bring others down. We may paint a rosy picture because we want to protect our kids (they read things on social media too). We try look on the bright side because we know some families are in a worse position.
Please don’t ask my kids how their sibling is doing. I know you mean well. All my kids really want is a bit of normal in a chaotic scary world. Right now they are living in a fish bowl. To be honest, my kids may not really know how their sibling is doing. We don’t give them all the details and the details change constantly. In addition, a lot of kids have a hard time talking to adults, especially adults they don’t know well. When people come up to them all the time asking about their sibling, it puts them in an awkward position. They just want to be a normal kid. Please just extend them a bit of kindness and grace. They are going through a very hard time too with a lot of disruption in their daily lives. They can use a lot of TLC, but please try not to put them on the spot by asking lots of cancer related questions. It can make them feel left out and that people only care about the sick child. Our healthy kids are important too.
Please ask my child’s dad how he is doing and support him. He will probably say he is fine no matter how things are going, but he will be grateful you asked and care. Dads are often forgotten warriors in this battle. It can be a lonely road. Couples are often apart for weeks, both are preoccupied with trying to keep everyone else going. A cancer diagnosis is hard on both moms and dads because we couldn’t protect our kids from a horrible beast and we can’t sweep in and quickly fix it. Almost all childhood cancers are caused by random genetic mutations, but we still wish we could have done anything to prevent it and protect our child.
The brightest lights shine in our darkest hours. A diagnosis of childhood cancer is illuminating. Friends, family, and sometimes strangers go above and beyond the call of duty to support us and we are forever grateful. We may not have time or energy to send lots of thank you notes, but we are truly grateful for every kindness big and small. Sometimes friends and family disappear. It happens to all of us cancer parents and you can’t always predict who will desert you. It is a crushing blow to lose friends and family at your weakest point. Please be patient with us. We are often exhausted because we haven’t slept well in weeks. We are often preoccupied because fighting cancer is consuming. Please try to stay with us to weather this storm. We may not return phone calls and texts like we used to, and we may not have a lot of time to spend with you, but we still value and need your support. With time it will get better.
Resources are scarce to help middle class families. Dealing with cancer is financially draining. Lost wages, deductibles and co-pays add up quickly. There are many unexpected expenses like parking, gas, meals at the hospital and child care. Many of us struggle financially and there aren’t many organizations to help.
We forge tight bonds with doctors, nurses and hospital staff. They become a second family for us. Then when our child goes off treatment or goes on hospice, we lose this support. It is a big loss at a time of great change.
We need help for a long time to stay afloat. Most help disappears after 6-9 months. Cancer treatments may last 2-3 years in a best case scenario. We are so grateful when people are able to offer help for a longer period of time.
Many families are dealing with more than cancer. Many of our kids and families were dealing with disabilities and challenges before the cancer diagnosis. It could be autism, ADHD, anxiety, depression, sleep problems, bedwetting, struggles with eating. Some of our marriages were struggling before the cancer diagnosis. All of these challenges make fighting cancer more difficult. We really appreciate your kindness and understanding.
Please don’t push simple cures for our medically complicated kids. Our kids have a team of experienced doctors and nurses who are directing their care. They consult with experts nationwide to provide our kids with the best care possible. We know you mean well, but please stop giving us information about miracle cures. You’d be shocked by the amount of medical advice we receive about essential oils, cannabis and the like. Please be assured we are researching every possible avenue to cure our kids.
Our kids desperately want a normal life and friends. Fighting cancer is very lonely. Please encourage your kids to keep in touch and reach out to ours. Please remind your kids to keep our kids in the loop, we know they get busy in their own worlds and forget. A card or message from your child could be a huge day brightener. A visit from your child would be even better. Please keep your kids home from school if they are sick. A virus that causes the sniffles for your child could send my child to the hospital for a couple weeks. Being in school means everything to our kids, please do what you can to help keep school a healthy place for everyone.
Remission does not equal a cure. Remission means there aren’t detectable signs of cancer in our child. Our kids still have to finish their treatment protocols, which can involve more years of radiation and chemo. Surgery may remove the tumor, but more treatment is required to make sure every last cancer cell is dead.
My fears are real. Even if my child’s cancer has high cure rates, please do not minimize my fears. Cancer treatment is fraught with danger. After kids are in remission, some people try to downplay our worries. We know reality. We know kids don’t always stay in remission, and there is nothing we can do to prevent a relapse. Try going to bed with that each night. Please just listen rather than telling us not to worry.
Please don’t say my child has a “good cancer” if they have a cancer with a short treatment plan or high cure rates. No childhood cancer is a good cancer. Even cancers with good cure rates entail treatments that are arduous, painful, expensive and frightening for the whole family. Cancer is cancer, and we will worry about relapse regardless of how long the treatment plan took.
Don’t envy our Wish trips and Cancer Perks. It is hard to believe, but some people do. We are forever grateful for the kindness our kids and families receive, but we’d trade them all instantly for a healthy child and our regular life.
Cancer takes away our kids’ present and parts of their future. We are grateful when our kids survive, but survival is complicated. Very few kids emerge from cancer treatment without any lasting “late effects.” Ironically, the treatments to save our kids’ lives can have a devastating effect on their bodies. Some chemos cause a secondary cancer later in life. Cancer treatment can destroy kids’ endocrine system (necessary hormones), their teeth, their hearts or their kidneys. Some treatments put young girls into menopause, others cause significant cognitive delays. Many kids lose hearing and fertility. Some kids are plagued all their lives with digestive problems. Hair doesn’t always come back. The losses are varied depending on the treatment the child received, and sometimes they don’t show up for decades.
Childhood Cancer is a family disease fought in the body of a child. The entire family is affected when a child is diagnosed with cancer. Siblings can feel neglected and overlooked while everyone focuses on the sick child. As parents, we feel torn all the time. We want and need to be with our sick child but we also want and need to be with our other kids. No matter where we are, we feel guilty and spread too thin. Even if we are home, there are always medical issues that need attention. We worry ceaselessly about all our kids. You can help by giving the siblings some extra TLC. If you know the family well, offer to spend time with siblings. If you don’t know us well, you could send an encouraging note or small gift for the siblings. It would do a world of good for them to know they loved and aren’t forgotten. We want all of our kids to have a happy childhood. If you can bring some sunshine to the siblings, we would be forever grateful.
The psychological impact may be long lasting. During and after treatment, some kids and their parents must also deal with PTSD, depression and anxiety. It is hard to know when and where they may pop up, but they are real.
Just because chemo is over doesn’t mean the battle is over. It may take years for our kids to catch up with yours, if they ever do. Months and even years spent in the hospital and out of the classroom can affect our kids developmentally, academically and socially for years. If we are lucky, we have a lot of support to help our kids catch up. Please encourage your kids to be patient, empathetic and inclusive. Our kids may still require a lot of medical intervention over the years. Survivorship is a gift, but it may come with a heavy price tag.
The period after treatment has its challenges. Everyone assumes we no longer need help after treatment ends, but some parents and kids are the most fragile after years of draining treatment. During treatment there is a clear common enemy and a goal in sight. You have a family, community, doctors and nurses to support you. Afterward, the support quickly disappears. Everyone assumes you are ok, but you are exhausted mentally and physically. Everyone in the family has to adjust to a new life. The end of treatment is a time for celebration and optimism, but it is also really scary to stop the fight and end the chemo. We parents have a love-hate relationship with chemo. It scares us to death, but it may also be our child’s life line. Cutting it off is both liberating and frightening. Everyone in the family may deal with this time differently. Some are eager to walk away from cancer and never look back, others are scared. Often when we were fighting, we simply kept marching through the daily challenges and emergencies. Now we have time to start processing everything our child and family went through. We still have heavy lifting to do as we come together and heal as a family. We will always worry about relapse and late effects. Every time our child struggles in the future, we will wonder if the problem was caused by their cancer treatment. We are grateful for our kids’ survival, but feel terrible for the kids who did not. We struggle to make sense of it all. Our kids will have to carry survivors’ guilt all their lives. We also feel deep sadness when we think about all our children went through just to have the hope of a future. We feel a profound sense of loss when we think of all the secondary losses the cancer caused- such as time away from our other kids and family and the friendships we lost or never formed while fighting cancer. We will never get back the years we lost with our other kids and spouses, and that is painful. Our cancer survivors missed out on the carefree childhood we wanted for them, and it is a lot to process. We will always wonder what might have been. Our kids may have to dream new dreams because their bodies were changed by their cancer treatments, but we will help them through it. We appreciate your continued support as we work through this.
Once you hear the words “Your child has cancer,” life is never the same. It is a scar that never quite heals perfectly. Your life is forever divided into before, during and after cancer. Our assumptive view of the world has changed. We all know bad things can happen in life, but we hope, and for our sanity have to assume they won’t happen to us or our kids. A childhood cancer diagnosis shatters those illusions for good. It isn’t easy to reconcile but we do our best. We will worry any time our cancer survivor complains with symptoms that are similar to the ones they had before their diagnosis. We may worry a bit more. We may take our kids to the doctor more often than other parents. We try hard to not overthink everything because we don’t want our kids shackled by worry and fear, but we know bad things can happen. You can’t un-know that.
-Anne White lost her son, Zach, to medulloblastoma brain cancer in 2009. Zach spent 3 of his 7 years battling cancer. Anne continues to be an active advocate in the childhood cancer community. Anne wrote this article in collaboration with, and inspired by, thousands of mothers of children diagnosed with cancer connected through Momcology.