Author: hope

Book response

Posted hopePosted in Children's book

Huge thanks to everyone for the heartwarming response to our book ! So far, we‘ve received ~100 book requests from various people, including kids at school, and friends. Very touching to see everyone’s support for a good cause.

Here’s a pic of our kid with the school principal and vice principal. It was quite funny to watch the principal quizzing her from a random page in the book. 😉 They shared many light moments. Bummer that she couldn’t go into the class to see all her friends (her counts were low, and it was busy due to the last week of school).

As of today, we managed to raise around $4k in donations from the book so far. All proceeds will benefit St Jude Children’s Research Hospital (as you may know, this is one of the top pediatric cancer research centers in the world, and they don’t charge a dime for treatment!).

Volunteering event: Visit to the pediatric unit at a hospital

Posted hopePosted in Volunteer & Donate

Ever considered volunteering at a nearby children’s hospital or clinic for a couple of hours? You could read a book, or play music, or entertain kids with jokes or a fun costume, or play a game with them (and these are just a few options!). Try it and you’ll discover how refreshingly different and meaningful the experience can be…

We tried this recently and found every moment of the volunteering experience to be worthwhile! As part of a volunteering event at workplace, we organized a trip to the pediatric unit at a nearby hospital (Kaiser, Santa Clara). A team of eight enthusiastic volunteers (including a Juggler, one dressed as a squirrel and another as Stitch from Lilo & Stitch) distributed fun and educational gifts to 15-20 kids from all age groups.

Laughter being the best medicine, we included joke books, emoji keychains (attach to the backpack or IV pole!) and emoji tattoos as gifts. We gave comfort toy blankets and storybook pillows to infants and toddlers; fun activity books, art and educational gifts for different age groups (including Google cardboard virtual reality for older kids, to keep them really busy). We also gave our children’s book on “How Sunshine Returned to Joyland” to the kids and nurses. Overall, it was a day well spent — a definite positive experience. Will plan more such in future 🙂

Charity event with Buster Posey

Posted hopePosted in Children's book

Many of you may have heard of Buster Posey, the famous SF Giants catcher. Did you know that he and his wife have been doing a lot of charity to help pediatric cancer? Check out the Buster and Kristen Posey Fund.

On June 10, 2017, he invited a few kids undergoing treatment for cancer and their families to meet with him, and watch the game later on. He met with the kids, answered their questions, took pics, signed caps, and distributed some goodies. And whoa, what an excitement on the faces of these kids! From four year olds to sixteen year olds, everyone was thrilled. Here are some pics.

As for us parents, it was a welcome change meeting other kids and families outside the clinic or hospital setting. A chance to smile, enjoy the outdoors (good weather and game!) and share many light moments together. Oh yes, forgot to add that kiddo got Buster’s autograph on our children’s book. Will treasure that 🙂

Volunteering and Donations

Posted hopePosted in Volunteer & Donate

Here are some facts about childhood cancer. Want to make a difference? There are many ways to help. You could volunteer at one of the cancer hospitals, or for the several non-profit organizations that are committed to helping end cancer. Below are a few examples in the Bay area.

Please do consider making a donation to any of these organizations or others of your choice. Your donations are tax deductible!

  • Donate to St. Jude Children’s Research hospital. Families never receive a bill for treatment, travel, housing or food.
  • Donate to Leukemia, Lymphoma Society. LLS is the largest voluntary health organization dedicated to funding research, finding cures and ensuring access to treatments for blood cancer patients.
  • Donate to Camp Okizu and help them support all members of families affected by childhood cancer to heal through peer support, respite, mentoring, and recreational programs.
  • Donate to Kids & Art foundation and help them improve the well-being of children by healing through arts. They offer weekly art workshops at children’s hospitals in the Bay area and monthly workshops at various destinations.
  • Donate to Jacob’s Heart and help them support underprivileged families with grocery deliveries, transportation to hospital/clinic, basic financial assistance etc.

A book dedicated to children with cancer

Posted hopePosted in Children's book

Towards the end of our kid’s intense frontline therapy, we started working on an adventure storybook for children titled “How Sunshine Returned to Joyland“. This book is inspired by, and dedicated to all brave kids fighting cancer, or facing other life critical challenges.

About the book: “When evil Darkness attacked and took away Sunshine from Joyland, sadness and fear took over. Apu, despite being very young, was determined to fight Darkness and restore Sunshine in Joyland. It was the most dangerous and difficult quest of her life. Join her on this adventure as she solves challenges, makes special friends (including dragons!), and climbs the steepest peaks of Mount Adversity. Can she defeat Darkness with the help of her friends? Will she be able to bring Sunshine back to Joyland?”

The book is now available on Amazon. 

Phase 5: Long Term Maintenance

Posted hopePosted in Diagnosis & Treatment, Phase 5: Long Term Maintenance

This is the longest phase of treatment for ALL, lasting anywhere between 1.5-2.5 years (longer for boys than girls). On the brighter side, the chemo drugs and schedule is fairly fixed and predictable, and life slowly starts returning to the new normal. On the harder side, the sudden reduction in clinic visits from daily (or multiple per week) down to monthly or bi-monthly visits can be hard, as it feels scary to venture back into the real world and send your kid back to school without knowing the ANC or immunity levels…

Details coming soon.

 

Maker Faire 2017

Posted hopePosted in Staying Positive & Learning

Sometimes quality of life takes higher priority than worrying about germs and crowds… Last weekend, after 9 months of staying home with barely any outings (except to the park nearby), we took our kid to Maker Faire 2017, something that she’s been dreaming about for nearly a year… (oh yes, we were loaded with hand sanitizers, masks, and a big stroller with her food and drinks.)

It was lovely to see the “maker” spirit in children! Reminded us that their bodies may be fighting a cruel disease, but their spirits are strong and they are quite the makers! Beyond the joy of making their own little things (be it lego or art or whatever else), they make everyday of our life special, with their warm and loving presence…

In particular, our kid had such a blast watching the various exhibits, ranging from a giant robot (15+ feet tall) made of balloons; to a large lego exhibit with moving lego trains, model of Santa Cruz boardwalk complete with moving roller coasters and rides all made of lego; 3d printers printing model brains, machines and intricate designs; giant cardboard robots (she got to wear some giant cardboard hands!); riding on robotic mythical creatures; pedaling bikes to power the music stage; sewing her own bag out of jeans; making her own soap, giant bubbles, stuffed dolls, toy balloons, ceramic pots, origami boxes etc. She was so excited, and so were we, to watch her joy. Thank you Maker Faire!

Lesson #5 — Dream big

Posted hopePosted in Lessons learned

Through this difficult journey, our kid and we have learned that it’s important to dream big. We CAN do and be whatever we wish. All we have to do is Follow our heart and Never give up. No matter what difficulties and challenges, we will eventually succeed.

Lesson #4 — True friends

Posted hopePosted in Lessons learned

We’ve learned that looks, riches and abilities don’t matter — true friends love you as you are. Good friends are always there to help. They are honest, generous, kind, joyful and loyal (like the friends in My little Pony), who taught our kid that “friendship is magic”.