Nutrition and wellness guide
Check out this great nutrition and wellness guide for children with cancer and their families, put together by Gabi from Jacob’s Heart and Stanford’s children’s hospital.
Category: Helpful resources
Looking back at the last 2 years, and what helped…
I couldn’t get myself to go to work today. It was exactly 2 years ago when the phone rang at night, and the doctor broke the news that our then 5 year old was diagnosed with cancer. Everything changed overnight, and we were abruptly tossed into what seemed like the dark ages of the medical system. I can never forget the nightmares that followed…
Today, she’s still undergoing chemo treatment, but is smiling and closer to her normal self. What a relief, and heartfelt joy to be given a second chance at life!!
A huge THANK YOU to everyone that has helped us through this trying period! When something like cancer hits your child, it’s a long and difficult journey (2 years and still going), and takes every ounce of strength and positive energy to fight it. None of us has that superhuman strength — which is why we need the support of our friends, family and workplace.
As I look back, there were numerous times when I felt “low” or let down — by life, friends or workplace. Below are a few things that have helped so far (in no particular order):
- Be direct, ask for help: Most folks are well-intentioned and ready to help, but don’t know how to, or get too busy with their chores. Instead of waiting to be understood and offered help, just ask for it — be it from your medical team, kid’s school, home, or your workplace.
- Promote healthy diet and exercise: Try to minimize packaged and processed foods, instead eat a healthy diet, rich in protein and rainbow colored vegetables / fruits. Balance with some light exercise as your kid’s energy levels permit.
- Keep researching and asking questions: You are the best advocate for your child. Keep asking questions to your medical team / school / support group, and keep researching to find better ways to help your kid, e.g., improved diet, cold press juicing, simple exercises, epsom salt soaks that ease pain, alternative medicine (e.g., acupuncture). You never know when and where a good idea can come from, so keep researching!
- Build positive memories: This is a long, difficult journey that few can understand, leave alone appreciate. Focusing on the brighter moments can help you heal faster. E.g., we made this video, and created a fun memory book that we revisit once in a while to cheer up our spirits.
- Build your kid’s confidence one step at a time: Most kids in treatment become diffident and feel left out due to their social isolation, and lower physical / mental energy levels. The transition back to school can be quite hard. Spend time with them, and help them build their confidence gradually. Encourage them to keep trying — no matter who says what, and no matter what the results are — and assure them that you always love them and will be there for them. I am not a shrink, but knowing that they are loved the way they are, goes a long way in boosting their confidence!
- Attend Networking events: There are a number of excellent NGOs and childhood cancer charities that help kids in treatment connect and heal. E.g., via art (Kids and Art Foundation), photography (Pablove Foundation), sports (Austen Everrett Foundation, Buster Posey’s fund), Camp Okizu, and Light the Night (Leukemia Lymphoma Society), to name a few. Meeting other kids with similar journeys can be a great way for children and families to feel connected and make new friends.
- Build a support group with gradual playdates: If your kid is sensitive like mine, social skills need active development. Try to arrange playdates to allow your kid to come out of their shell, and feel comfortable interacting with other kids. E.g., when our kid found it hard to transition back to school and felt teased by other kids, we arranged a few playdates with school friends, and it helped break the ice. (Of course, tread carefully with playdates in the flu season, or if your kid is neutropenic.)
- Shift the focus from yourself to helping others: It can be quite hard to digest the impact of cancer on your kid’s life and yours. I’ve found that shifting focus from “yourself” to “helping others” can sometimes provide the necessary meaning and strength to keep you going. E.g., packing and distributing gifts and books to kids at the clinic and hospital, as and when time permits, has been quite fulfilling.
- Try to convert your anger and frustration into something positive: The treatment is already long and hard, and your frustration will only make it harder… Try to find creative outlets to take your mind off the stress. E.g., During the initial part of the treatment, our kid and her friend wanted to raise money for helping kids in treatment, by creating and selling artwork. This random idea formed an outlet and helped convert her anger and boredom into piles of artwork. We eventually converted the 50+ pieces of art into a children’s storybook, “How Sunshine Returned to Joyland”, and shared it with other kids in treatment. Though we didn’t really plan for any of this to happen, in hindsight, it turned out to be a cool way to channelize our anger and frustration into something bigger and more beautiful than our sorry little selves. 🙂 Try it, doesn’t have to be a book, could be a DIY calendar or photo album with pics of lego that your kid built, or books they read, or things they baked or ate, or other fun stuff…
- Find ways to rejuvenate: If a flu leaves you tired, imagine how a 2+ year long flu would feel! Actively seek hobbies or ways to relax and help heal. No need to get too fancy, even simple things are surprisingly effective. E.g., a nature walk to a nearby park, baking cupcakes at home, playing family board games…
- Take care of yourself: As caregivers, it’s easy to get busy doing things for your kid, family and workplace that you barely have time to take care for yourself. Well, I suck at this to say the least (working 16+ hours a day between taking care of kid and work – she’s on my insurance). My action item is to take better care of myself, so I can continue supporting my family. Don’t know how yet, but working on it. 🙂
Thanks to the above, and a wonderful set of friends and family, we’ve somehow managed 2 years of treatment, while minimizing unexpected hospitalizations and complications so far. And if we can, so can you! Wishing everyone the very best in your journeys!!
Tips for kids
It’s heartbreaking to see kids struggle with cancer treatment and cope with the sudden disruption of their life. It is very challenging on every front — physically, emotionally and mentally. But it’s remarkable how resilient and graceful kids can be despite the chaos! So hang in there, all will be well… Here are some things that have helped our kid stay safe and positive through this trying period (sorry for the long post).
On the physical front:
- Keep the house clean, change linens every couple of days, if not, every week.
- Wear a mask whenever near visitors or while stepping out.
- Avoid visitors if they have a cold, cough or other germs.
- Use soap or hand sanitizers liberally (we put one in every room so we don’t forget).
- Help kids stay active — a 1/2 hour walk in the neighborhood, or turn on their favorite music and dance! It helps the muscles stay strong, and prevents walking disorders.
- Nutrition is important, unfortunately oncologists don’t talk enough about it. This is a long topic, but a couple of things to remember:
- Ensure that kids get enough protein (around 1g per pound of body weight)
- Since they can’t take food supplements during the frontline treatment, try to get the good stuff in through fruits (e.g., kiwi, orange, lemon are high in vitamin C) and rainbow colored vegetables. We ‘ve been juicing (carrot, mixed greens) everyday for the last 5 months, and it’s helping our kid overcome some of the side effects of chemo…
On the mental / emotional front:
- Assure them that although their life sucks now, they will be *fine* as soon as the treatment is over. Often, kids (and we!) just need to feel assured that all will be well. Call fairytales cliched, but they are so assuring with their happy endings. We watched movies and shows that reinforced this message (e.g., Cinderella suffered, but she remained brave and kind, and eventually lived happily ever after; similarly with Beauty and the Beast; Peter Pan…). For older kids, try Harry Potter, Narnia, Never ending story, Lord of the rings… Movies are a fun way to reinforce messages like “never give up”, “all will be well”, “believe”, and “there will be a happily ever after”…
- Most kids turn to iPad or TV or video games to cope with the suffering. This is fine initially, but too much iPad = iMad = iSad = iBad. Instead, consider trying various fun activities to keep kids engaged and distracted from the pain and boredom. This post has some ideas on how to wean…
- During chemo, even normal day-to-day chores like brushing, eating food, medicines, walking etc can become challenging. This post has some ideas on converting boring rituals to colorful jewels and stickers, and helping kids choose good activities. Be creative and try your own incentives!
- Find ways to laugh and relax. Our kid loved art — she generated oodles of art and we decided to fill an entire wall of art. That was her way of staying busy and creative. Music and dance can also be very relaxing.
- Books can be an awesome friend, by opening up a world of comfort and imagination for kids who are struggling with disruption of their life. Here are some books that work well for 4-10 year olds.
- for kids that enjoy food, try DIY food projects — our kid loved watching cooking shows on Youtube, and we baked a lot of healthy treats from ginger almond cookies, cakes, to popsicles and ice-creams with different fruits and nuts. Get those young chefs out! (and be prepared to deal with a messy kitchen). This FB post has some stuff that our kid tried.
- DREAM! Make a nice wish list of all the things your kid would like to do once the treatment is over. This could be anything from a trip to Disneyland, sleepovers with your best friend, to traveling to exotic places around the globe. (Don’t worry about whether it’s doable, just get them to dream and *want* to try their best to get well soon).
- Tell kids that it’s completely OK to feel mad, angry and upset that things are not the way they want… Discuss how they might express themselves better. We found books like “Calm down time”, “Little Dinos don’t yell”, “Little monkey calms down” etc to be quite helpful. Reading it daily helped reinforce better ways to handle their emotions… We even made up our own calm-down song. We would just hug each other and sing this song until our kid calmed down 🙂 We also had a cool down spot (built a DIY tent near the bed) and put her favorite stuffed toys near it, so that she could self soothe…
These are just some ideas that have worked for us. We are sure there are many more. Let us know what worked for you!
Tips for parents
When kids are faced with a life threatening illness, it’s devastating for parents. Here are some things that have been helping us cope with our kid’s cancer treatment. (Often, kids are so resilient and graceful, that they cope faster and better than us, and inspire us with the necessary strength to march ahead!)
Medical front
- Ask enough questions to the doctors and oncologists. No question is stupid…
- Keep notes or a journal to record key observations and questions. My husband and I have a shared Google doc to keep track of various side effects, drugs, questions for the oncologist etc.
- When overwhelmed (e.g., to enroll in a clinical trial or not), ask the oncologist or person in charge, “What would you do if this were your kid?”. We have often found that folks pause to think for a moment, and the answers are more sincere, and from the heart…
- If doubts persist, get a second medical opinion. (We did and it helped!)
- Once you are comfortable with the medical team, please trust the oncologists and build a good working relationship with them. Doubts and mistrust make it hard for both the parents and doctors… (Remember that the treatment period is long and that you may run into the same doctor multiple times)
Taking care of yourselves (Yes, it matters a lot!!)
- The road ahead is long and tiring… Take it one day at a time. Sometimes, we’ve had to take it one moment at a time!
- Spend some time taking care of yourselves. Listen to music, meditate, do yoga, go for a ½ hour walk, massage, an outing with a friend… It’s important for you to relax and rejuvenate too!
- Eat on time and stay hydrated. The diagnosis and treatment can be so overwhelming that parents may tend to focus solely on the kid, while ignoring themselves. But remember that the treatment is long, and you need to stay healthy first to help your kids!
- Think positive. This is easier said than done. As insane as things are initially, *Believe* that things will get better. Find your source of inner strength… For me, meditating and believing that our kid was completely under God’s protection and that He was taking care of her every moment, helped let go of the worries and gave me the strength to focus on what needs to be done…
- Do not hesitate to consult a psychologist if depression continues…
Finding a good support network
- Please don’t be shy to ask friends and family for help. Grandparents visited and stayed with us, providing emotional support and helping us with some chores, which was of great help! Sometimes, help can come from the most unexpected quarters. We got lucky with a couple of new friends who went out of their way to help, be it buying groceries, cooking a meal, entertaining our kid, or simply being available to listen and help…
- Great if you could connect with parents of cancer survivors. FB groups like Childhood Acute Lymphoblastic Leukemia are good, and even better if you could connect with a couple of parents that you could call and discuss 1-1. Learning the do’s and dont’s, and best practices can be immensely helpful!
- Good books like “Childhood Leukemia” by Nancy Keene are also very helpful. This was recommended by our onc and I found it very informative and helpful. It included excerpts from various parents, and covers a variety of topics from treatment overview, to drugs and side effects, to dealing with family, siblings etc.
- Contact support organizations as needed for financial, medical and counselor support. Examples include Leukemia and Lymphoma Society, American Cancer Society, Candlelighters…
- Reading stories and blogs about cancer fighters / survivors and learning from their journeys and experiences can be helpful too. (This is just one of several blogs out there.)
This list is by no means complete. Hope you found a couple of useful things!
Helpful books
As parents, we found the following books to be quite informative and helpful.
- Childhood Leukemia, by Nancy Keene. This book might be a bit overwhelming, but I would recommend it if you are looking for an overview of the entire treatment, some side effects to look out for, useful tips etc. I especially found the excerpts from various parents to be very helpful. For example, after reading this book, I requested the nurses and doctors for EMLA cream before each port access or injection. About the book:
“This most complete parent guide covers not only detailed and precise medical information about leukemia and the various treatment options, but also day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues, communication, feelings, and, if therapy is not successful, the difficult issues of death and bereavement. Woven among the medical details and the practical advice are the voices of more than 150 parents and children who have lived with leukemia and its treatments. As many parents have already found, advice from “veteran” parents can be a lifeline.”
- The emperor of all maladies, by Siddhartha Mukherjee. If you want to know about the history of cancer and how some of the drugs we use today were developed, you will find this book to be very engaging. I didn’t know oncologists could write so well! About the book:
“Winner of the Pulitzer Prize, and now a documentary from Ken Burns on PBS, The Emperor of All Maladies is a magnificent, profoundly humane “biography” of cancer—from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it to a radical new understanding of its essence.”
Our kid loved these books, that gave hope and courage, while also being fun to read.
- The jester who lost his jingle, by David Saltzman. Our kid developed a special connection with this book on laughter, especially after she learned that the author (and illustrator) was himself a cancer patient. She enjoyed reading both the English and Spanish versions. About the book:
“David wrote and illustrated The Jester as his senior project at Yale University before his death from Hodgkin’s disease in 1990. His desire was to give The Jester, with its upbeat and hopeful message, to children facing serious challenges.”
- Berenstain Bears book series, by Stan and Jan Berenstain. A lovely set of books for children on various topics ranging from watching too much TV, eating junk food, bad dreams, playing fair, being brave and kind, speaking the truth. As mentioned in this post, our kid loved to read and re-read them! About the book:
“Stan and Jan Berenstain published the first Berenstain Bears book in 1962, and the series has gone on to capture the hearts and minds of children across generations and across the globe. In the 50+ years since “The Big Honey Hunt,” the Bear family has grown from three to five members; the Berenstain Bears have been translated into over a dozen languages; and over 300 million books have been sold worldwide.”
- Wherever you are, my love will find you, by Nancy Tillman. This came as a beautiful gift around Christmas time. About the book:
“Love is the greatest gift we have to give our children. It’s the one thing they can carry with them each and every day. If love could take shape it might look something like these heartfelt words and images from the inimitable Nancy Tillman. Here is a book to share with your loved ones, no matter how near or far, young or old, they are.”
Coping with hair loss
Losing hair can be quite hard for kids… especially for girls whose favorite princesses have long hair like Rapunzel… Few things that helped our 6 year old cope with hair loss:
– Seeing pics of kids (and adults) whose hair grows back after treatment was very helpful in assuring our kid that the hair loss was temporary, and that her hair would grow back nice and long after treatment…
– Make it memorable. We visited an upscale hair salon. I cut my hair by 15” and donated it to Wigs for kids, and said, “Mommy looks very different now, but I still love you the same.” Our kid felt more comfortable and agreed to get her hair cut. The rest of the week, she kept talking about how we donated our hair to help other kids get wigs. Made her feel like a lil’ hero!
– Watch movies and read books. We watched movies like Beauty and the Beast which reinforced the message that “Looks don’t matter, it’s the heart that matters”. Kids relate much better to princesses and superheroes and hearing from them is very reassuring…
– Time for fancy caps and wigs. We had many funny caps including a puppy, monkey, pig… Our favorite was the one we made with medical gloves and emoji during a hospital stay. We didn’t try wigs, but I’ve heard a lot of folks having fun with it too…
– It’s only natural for kids to miss their hair. Our lil’ one loved combing my hair. We bought her a couple of dolls with long hair and she loved combing them over and over again!
– Find ways to laugh! We discussed and drew various crazy hairdos that our kid would like to try when her hair starts growing again. Her favorite is waterfall and spaghetti. What’s yours? (Needless to say, we all unanimously *hate cancer*)
While it’s very hard initially, you will be amazed by how quickly kids accept their new look. They may be bald, yet they are beautiful, brave and kind…