BraveKidsFightCancer

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!!