Month: March 2017

Tips for parents

Posted hopePosted in Helpful resources

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! 

Support network — Friends and Family

Posted hopePosted in Support network

Kids can’t fight cancer alone. Nor can their parents. No matter how strong we may seem, a good support network of friends and family goes a long way in helping!

Grandparents visited and stayed with us to help, which was a boon in disguise. Uncle visited quite often, to read books and play games, which our kid enjoyed very much. We have been super lucky to find a couple of very good friends who have been going out of their way to help. We keep running out of words to thank them!

As parents, we found it very useful to talk to other parents whose kids fought cancer and had positive outcomes. Understanding the best practices, do’s and dont’s, side effects to watch out far, tips to overcome them, questions to ask the doctors etc were very helpful. Although our kid was young (five when diagnosed), we found the suggestions from adult cancer survivors to be quite helpful. For example, we learned about the importance of juicing, which has since become a daily routine for us. We also learned about the benefits of alkaline diet, RO water, increased protein intake and other tips to help overcome the side effects of chemo.

As odd as it may sound, we initially avoided online support groups and search engines as we found the deluge of information quite overwhelming. Frankly, there’s too much information out there with little quality control, ranging from speculations about likely causes of cancer, anti-cancer diet, to articles and posts about kids developing various complications, relapses, negative outcomes… We were already crazy busy helping our kid fight the side effects of chemo and overcome the emotional trauma, that we didn’t have the stomach for hearing negative outcomes. We chickened out and avoided online support groups for a while…

Later, when our kid was more stable emotionally and physically (around the Interim Maintenance phase), we ventured into online support groups. We found a couple of good online parent support groups on Facebook (e.g., Childhood Acute Lymphoblastic Leukemia) to be quite helpful.

Inspired by the support groups, we started this blog and the companion page, Brave Kids Fight Cancer on Facebook, to help share our experiences and ideas to help kids stay positive through the long and difficult treatment period. Hope you find it helpful. Please join and let us know what worked for you!