Author: hope

Books are a true loyal friend…

Posted hopePosted in In love with books

During the induction phase, amidst all the chaos, our daughter cheered up when she saw a book with her name on it. The book was about a young kid who was a refugee. Although his life was hard, he loved helping his friends and family. One day, he found a pair of magic eyeglasses through which he could see sparks around some people. Curious to learn about them, he later discovered that whenever people helped without expecting anything in return, these sparks appeared magically. The boy was thrilled and eventually became a spark collector, who’ld help everyone around, and use the sparks to brighten the hearts of those in need…

Our kid loved this story. She would read this book again and again, especially during the port accesses, dressing changes, or other medical rituals that scared her. It had a strange, calming effect on her. She wasn’t reading much except for this book…

When we transitioned back home after one month at the hospital, she had frequent violent and emotional meltdowns from the steroids, trauma of hospitalization, hair loss etc. The doctors insisted on setting and following the same rules for acceptable behavior as we would if she were normal and off-treatment.

All that sounds good in principle, but how do you set and enforce rules for a kid whose life is already severely restricted?

Books to the rescue! We started reading toddler books like “Little dinos don’t yell”, “Calm down time”, “Little monkey calms down”, “Little dinos don’t hit”. These books gently reminded her of acceptable behavior, e.g., take a deep breath, count 1-2-3, go to a cool down spot, play with stuffed toys, read a favorite book, sing a quiet song, hug us and discuss her feelings with us. We also made up funny songs with these rules, and sang them to help her remember good ways to cope with the stress…

We had an aha moment when we discovered the first Berenstain Bears book. Her home school teacher brought a couple from the library, and our kid loved it. We ordered the full set of 30 odd books. The bear family was fun. The bear cubs ran into similar challenges like us — watching too much TV; eating junk food; forgetting manners; learning to be brave, kind, respectful, speaking the truth; avoiding gimmies; playing fair. We started by reading one book every night. She fell in love with these books. She was so amused with the book, “The Berenstain bears forget their manners”, that she read it to us over 3 times in just a day. We even tried making a set of golden rules for our family 😉

A fun facet is that most of these books come with stickers. As seen in this post, our kid loved stickers. After reading each book, she’ld pick a sticker and paste it in her chart. She loved these books and stickers so much, that sometimes she would read 2-3 books in one night!

Upon finishing 30 Berenstain bear books, she was mighty thrilled to earn a golden trophy sticker. Beyond improving her reading skills, more importantly for us, these books were a fun way to reinforce good habits and values. Indeed, we started seeing a gradual improvement in her attitude. We owe a lot to the Berenstain Bears family 🙂

It was time to try chapter books. Since this was a significant step up from the picture books she was reading, we incentivized her with a golden trophy sticker for each chapter book that she completed. She received a couple of Fancy Nancy chapter books as gifts around Christmas time. She liked the books on Super Sleuth, and Soccer Mania. We then experimented with more books, on ponies, princesses etc. She’s now reading Charlotte’s web and loves it. It’s a bigger book, and is taking us much longer to read, but she’s enjoying it so far.

Like Belle from “Beauty and the Beast” who loved to read books, our kid has now fallen in love with books, and finds the much needed comfort and room for imagination. Indeed, books are a true and loyal friend!

Playing with the microscope

Posted hopePosted in Fun with Learning

Ever seen a kid playing with a new toy? Their excitement, sense of wonder and curiosity can be infectious — be it playing with a ball, doll, game, or a microscope!

When a good friend gave us their son’s microscope, we wondered if it might be too much for a six year old. We were so wrong! When she saw an onion peel under the microscope, she was blown away by how different it looked under the microscope. The next thing we knew, she was scrambling around the entire house looking for different things to inspect under the microscope. We tried various items ranging from edible stuff (sugar, onion peel, crushed ginger, spinach leaf), liquids (water, hand soap, green juice), to paper and clothes (cotton, synthetic from a doll’s dress, wool from a sweater). She (and we) had a blast! You can watch her excitement in the video above.

Relaxing with art

Posted hopePosted in Art

Our kid loved art — it was her best friend, and helped her relax as well as heal. She loved it so much that we decided to fill an entire wall with art 😉

She liked all types of art — from doodling, cartooning, sketching, and watercolor, to acrylic on canvas. We picked the style and difficulty depending on her energy levels and motor control. We saved acrylic for days with more energy and fine motor control. Otherwise, the more frequent ones were doodles, sketches, and cartoons.

During consolidation, she got a nice lightweight boogie board as a gift. She loved it and started doodling like crazy — she drew doodles of us, her grandparents, her favorite princesses and characters. We also used it to play games like hangman and pictionary. We took that along everywhere, to the clinic visits as well as hospital stays. It became our lightweight companion.

Apart from art, we also tried crafts like big melty beads, stained glass, shrink art and clay charms (beware: some of these involve a bit more of parental help).

This post will be incomplete without emojis. Our kid simply LOVED emojis. Through her several hospital stays during Interim Maintenance in the months of December and January, she spent a lot of time making cards with emojis for the nurses and her hospital friends. Some of the nurses called her the “emoji girl”! This one is my favorite, it took her a couple of days. Guess what she used to draw the faces? Small hospital cups for medicine and mouthwash. 😉 She made this card for the nurses and staff at Kaiser, and they loved it so much that they hung it on their display board for several weeks. She was so touched by their kind gesture, that she drew more emoji cards. Lol!

Overall, art has been super relaxing for our kid, and continues to be her favorite thing to do each day. Did someone say art can be therapeutic? You bet!

Fun with Math

Posted hopePosted in Fun with Learning

 

You are probably wondering, “Who cares about learning and math when the kid is undergoing cancer treatment”? Indeed, the shock of the diagnosis and trauma from treatment was hard enough to cope with, that for a long time, learning was the last thing on our minds… However, after a month, when she kept feeling that her life was being wasted without school, playdates and classes, we realized that we were wrong…

We learned that engaging kids in various fun and learning activities provides them with a much needed distraction from their social isolation, long and painful treatment. It helps them stay positive by providing a sense of accomplishment and something to look forward to. And if done the right way, it can be fun too! So we began our hunt for ways to make learning fun for a kid with cancer…

During the induction phase, when she had more energy from the steroids, and was addicted to the iPad, we introduced her to some educational apps. Here are a few that she enjoyed a lot.

  • Osmo tangram: This is a fun game for kids and adults. You arrange triangles and squares to make funny shapes. When you solve enough tangrams, you can conquer castles and earn more treasure. What a cool way to have an adventure with geometry!
  • Osmo numbers: Allows hands on play with numbers. Kids go fishing for numbers by placing physical tiles that add to the number. It offers a fun way of adding numbers. Our kid loved to dive into this ocean of math fun!
  • Math Bingo: who doesn’t like Bingo? And this game is Bingo with a math twist — you solve the addition or subtraction problem and find the resulting number on the Bingo card. Our kid loved it!
  • ABCmouse.com: It has a section full of math apps (also puzzles, science, geography etc).

After the induction phase, as the intensity of chemo drugs increased in the consolidation phase, she had much less energy and started playing mindless games on the iPad, and watched a lot of candy and other videos on Youtube. She was irritable, had trouble sleeping, eating and had several emotional meltdowns. Per our oncologist’s recommendation, we tried to gradually wean her from the iPad (see this post).

We introduced a jewel chart to motivate her towards good habits and activities. Everytime she completed an important task (e.g., brushing teeth, eating healthy food, taking medicines, walking / exercise), she earned jewels. As described in this post, the jewel chart helped convert boring everyday rituals into earning colorful jewels and rewards.

The jewel chart was a simple and fun way to do math too! At the end of each day, she would add the jewels for different tasks to find the total number of jewels earned for that day — that’s adding numbers up to 25-30 each day. Every sunday, she was eager to add and find the jewels earned for the entire week — that’s two digit addition with carry overs and she learned it in a fun way. 🙂

We also kept a running count of the total jewels earned so far. That started as addition with 2 digits, became 3 digits after a week, and 4 digits after a month. Thanks to the jewel chart, she was eager to earn and add bigger and bigger numbers!

We tried to make the numbers more fun by adding milestones. Her big wish was to go on a 3-day trip to Disneyland with family and her best friend. This seemed like an excellent opportunity for some Disneyland friendly math. Together, we went online, checked the ticket price for a 3-day trip to Disneyland, made a list of how many tickets we needed, and she added the three-digit numbers to find the total number of jewels needed to make this wish come true. The answer was ~2500. If she earned 2500 jewels, she could win the Disneyland trip. She was now excited to learn subtraction to see how many more jewels to her favorite milestone.

By now, she was growing fond of math and wanted to do learn more. However, books and worksheets were still too boring for her. Around then, her best friend introduced us to IXL math, an online website that offers math worksheets on various topics from first grade. We tried it as an experiment, and our kid liked the instant feedback and encouragement and the variety of rewards. At the simplest level, upon answering a question correctly, the site would randomly say something like “Terrific”, “Well done”, “Excellent”, “Good job”. Further, upon completing a skill that comprised of around 30-50 questions, the site would give a gold medal. Finally, upon finishing a set of skills, a magic prize (the picture of an animal or artifact) would reveal in the first-grade grid. She was so eager to unlock all the surprises in the grid, that she happily learned more math skills.

What a fun way to gamify Math! Our kid loved it so much that she finished 2000 math questions by the end of the consolidation phase. We were proud of her efforts and gave her a small trophy. She was so thrilled to win the trophy that it’s all she could talk about for the next week or so. 🙂

 

 

Phase 2: Consolidation

Posted hopePosted in Phase 2: Consolidation

Above: Our kid’s doodles telling the psychologist about how she cannot sleep; her clinic visits; hospital stays; how she was constipated and couldn’t poop for 5 days…

As challenging as the induction phase was, consolidation was by far the hardest. We spent our birthdays at the hospital, and she had chemo on all important events — her birthday, halloween, and through the thanksgiving break…

We had barely recovered from the sleeplessness, extreme mood swings and hunger pangs of induction. The weekly lumbar punctures started showing undesirable side effects ranging from hallucinations, sudden mood switches from happy to sad, involuntary limb movements, inability to stand or walk. Luckily, a brain MRI showed mild neurotoxicity, though not dangerous. (Phew, the thought of brain damage was scary). For subsequent lumbar punctures (next phase onwards), we requested Leucovorin rescue to help avoid these side effects.

Among other milder shocks of consolidation was that we had to administer chemo via IV at home — this was nerve wrecking initially as our kid was terrified of the port and anything related, but she calmed down by the second round and it got easier from then on.

The sheer unpredictability of chemo side effects was quite frustrating — the same drug (for example, Cytarabine) caused non-stop fevers for the first round (for 4 days); fever, sleep and hospitalization for the second; sleeplessness and severe bone pain for the third; intense nausea and loss of appetite for the fourth. There was just no pattern! Our internal predictive models failed miserably 🙁

Our kid had a severe reaction to one of the drugs (PEG asparginase) on her birthday and the alternate drug (Erwinia asparaginase) had many side effects and issues. Unfortunately, the IV version had world-wide shortage (single manufacturer!), and instead, she had to take 2 intramuscular shots on her thighs, every alternate day for 2 weeks. Getting so many chemo shots was painful and emotionally traumatic as she had always been afraid of shots since she was a baby. How were we ever going to keep her calm through so many repeated shots?

Then again, little children are stronger and full of surprises than we know. While we struggled with the fear of her pain and suffering, she surprised us with her courage — she talked to the feelings doctor (psychologist), realized that she needed the shots to get completely cured, was assured by the wonderful nurses that they would be gentle and quick. We further assured her that we would use the magic cream (EMLA) so it would not hurt, and after every shot, she could pick a small gift from a shop. It helped! After 2 rounds of shots, she said, “Mama, I don’t want gifts anymore. I will do it ‘coz I want to be completely cured.”

We witnessed an important change in our kid’s attitude from Halloween onwards. Although she was neutropenic, we decided to let her live a life and went trick or treating to a couple of houses in the neighborhood. Her friends visited too. She first dressed up as a witch (with a mask!) and then strawberry shopkin. She had a blast. I was so grateful to see a smile back on her face after two and a half months…

Consolidation had a rough ending around Thanksgiving break. After the first few rounds of Erwinia shots, our kid stopped eating or drinking (due to severe nausea and loss of appetite) and suffered from intense bone pain and abdominal pain. Severe constipation lasted for 5 days through the Thanksgiving break. She kept crying in pain through these days…

The silver lining in the dark cloud was that she suffered so much that she cried and said, “Mama and Papa, I will eat and drink any healthy food you give me ‘coz I don’t want to suffer like this.” Like a true champ, she stuck to her words — she gave up on junk food / candy, and started drinking green juice, lemon water with aloe, soy milk, ate oats, fruits and veggies and started feeling much better in the following days!

The joy of Music & Dance

Posted hopePosted in Music & Dance

When our daughter’s treatment started, and her social life came to a grinding halt, we needed to think of new ways to keep her happy. She was a very active kid before, and now, she was suddenly confined to the four walls of the house (barring the clinic and hospital of course). No playdates, no school, no classes… That’s enough to drive any kid nuts…

Art, music and dance gave her something to look forward to — a new way to express herself and her feelings. Thanks to their combined relaxing effects, our kid morphed from a victim of cancer to a brave and positive-spirited fighter.

For months, our five year old had been asking for piano lessons. We didn’t take her seriously earlier. Now, we couldn’t bear to ignore her request. We searched around, got lucky and found a really sweet piano teacher who was willing to come home to teach our daughter. Our kid was so thrilled that she would practice her lessons eagerly. I still remember how excited she was when she finished the first book (level A). She couldn’t stop telling everyone at home about her graduation! 🙂

We also had fun making up our own silly songs. One of these songs became her favorite lullaby. Whenever she was sad, or in pain, or had a bad dream, we hugged each other and I would sing this song, while rocking her. She would fall asleep like a baby. When she was awake and felt silly, she would add her own funny lyrics to this song.

“She is so brave,
she is so kind,
she is so loving all the time.
She gives and gives
a lot of love.
She gives and gives
a lot of joy.
She is an awesome listener,
she is a terrific helper.
She is the best gift that we received,
we love her very much!”

Her other favorite songs were Rachel Platten’s “Fight song”, Katy Perry’s “Happy Birthday”, “Unconditionally”, “Roar”, “Fireworks”, and Shakira’s “Waka Waka”. She loved to dance to these songs. Besides fun, this was an awesome way to exercise and strengthen her muscles weakened by chemotherapy.

My fondest memory is when she completed the 6 rounds of intra muscular shots (one on each thigh, total of 12 shots) during the consolidation phase. She was so happy all the shots were over, that when she came home, she turned on loud music and danced like crazy for an hour!! It was the most innocent and beautiful victory dance that we had seen…  

Take a deep breath… Relax… Sleep…

Posted hopePosted in Take a deep breath

 

Our kid drew a doodle and told the child psychologist, “I can’t sleep at night”.

On most nights, she had trouble falling asleep. She started hating nights as it brought back ugly memories from the initial hospital stay — from being poked at night in the ER, to  port leaks, dressing changes near the chest, monitors beeping loud every now and then, nurses rushing in and out… The result was intense emotional trauma. She had multiple night terrors, where she‘ld wake up crying hysterically. She was so scared of what may happen at night, that she did not want to sleep…

Continued sleeplessness over weeks was driving us tired and insane. Desperate, we tried anything and everything that the doctors and our friends suggested. Bedtime routine of shower, followed by storytime, lullabies, calming nightlights, a cozy tent with favorite stuffed toys… Somehow nothing seemed to work… We went to the child psychologist, but that wasn’t of much help either…

After trying various things, a couple of ideas that finally worked are rocking her to bed (yes, like a baby!) while singing a song or telling her a story, and trying the 7 minute Heartfulness relaxation technique while lying on bed. This is a simple technique that progressively relaxes each part of the body. Every time we tried it, she and my husband were fast asleep before we completed the script! 😉

From boring rituals to colorful jewels and stickers

Posted hopePosted in Staying positive

 

After one month at the hospital, when we returned home, even basic habits like brushing teeth, eating on time, drinking water, walking, peeing etc became a challenge. Each day seemed to consist of a long list of rituals. It was like having a newborn baby, who was five years old…

Thanks to a wonderful suggestion from one of the nurses, we tried jewels as rewards. It worked! Our daughter loved jewels, and a jewel chart was a perfect way to motivate her to do basic chores (and eventually, choose good activities).

We bought adhesive jewels of different shapes and colors. Red hearts for “thinking happy thoughts”, pink hearts for “brushing teeth”, green stars for “eating”, pink ones for “walking”… And if she earned more than 20 jewels a day (that typically meant brushing teeth twice, drinking around a liter of water, eating 3 meals, taking medicines, walking well, pee + poop regularly… and bonus for good activities), she could pick a surprise gift from the treasure box (we made one up with items from the dollar store or such). Soon, the chart was filled with jewels. 🙂

We then asked our kid what she would like to do when she gets well. She wanted a 3 day trip to Disneyland with her best friend and family. Nothing like a happy dream or wish to look forward to, amidst the painful medications!

We went online, checked the ticket price for a 3-day trip to Disneyland, made a list of how many tickets we needed, and she did the addition and found that we needed ~2500 jewels needed to make this wish come true. We gave her a bonus of 1000 jewels for enduring her first month of hospitalization and for doing a great job with her medicines.

Our kid started working earnestly towards the Disneyland milestone. Each day of boring rituals was now converted to earning colorful jewels!

In a couple of months, after making the Disneyland milestone, she was starting to tire of jewels. At this point, we switched to reward stickers. Emoji stickers for good attitude (her favorites!), food stickers for healthy eating, space stickers for learning, sports stickers for walking, ribbon stickers for excellence — you name it, we had the sticker. 😉

We set a mix of small and big milestones. After reading for half-hour (roughly the time to read a picture book like the Berenstain bears), she’ld get a small sticker, and after reading 30 such books, she‘ld get a small trophy! She suddenly fell in love with reading books. After every book, she’ld go and pick a favorite sticker and paste it on her chart.

Her room was soon filled with colorful jewels and sticker charts! She loved it, and for us, it was a simple and effective way to help her choose good habits and activities over bad ones. Tell us what worked for you!

Too much iPad = iMad = iSad = iBad

Posted hopePosted in Staying positive

During the initial induction phase, we were ever grateful to the iPad. Hats off to Steve Jobs for inventing one of the most addictive devices for kids! The instant audio-visual entertainment from apps was hard to beat. She would spend hours on Osmo apps (tangram, numbers, word, coding), ABCmouse.com, and several gaming, cooking and other apps. But continued hours with iPad = iMad = iSad = iBad. Breaking this was key to better sleep, mobility, and well-being.

Our oncologist noted that, “The American Pediatric Association recommends not more than 2-3 hours of iPad or TV for kids this age”.

Wow, we were at the opposite extreme — our daughter was probably without the iPad for that time during the day!! That was her way of coping with the trauma and stress of being stuck at the hospital for a month…

And she wasn’t alone. Every time I took a stroll in the hospital, or saw other kids, they too seemed hooked to a smartphone or screen…

How were we going to wean her off the iPad?

As mama bear in Berenstain Bears puts it, “When you want to remove a bad habit, start by introducing good habits”. But unlike the bear family, rules wouldn’t work in this case. Instead, we tried a combination of rewards and doing fun activities together. As she was watching her iPad, I would sit by her and start coloring something funny, read an interesting book, or play puzzles like word hunt or tangram. Nothing worked the first few times… I kept trying to draw her into the activity — “what hairdo do you think we should draw for this princess?”, “what color do you think we should use?”, “could you help me with this word?”, “hmm, I can’t seem to find this word in the word hunt”, “I wonder how to make this tangram shape”… Eventually, she would join in the activity and take over the art, or puzzle, or read the book by herself 🙂

We also incentivized her with stickers and jewels for selecting good activities over iPad or TV. This paid off quite well, as described in this post. By the end of the consolidation phase, our kid was spending <3 hours/day on the iPad, choosing from a wide range of fun activities, and much happier.   

Coping with hair loss

Posted hopePosted in Helpful resources

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…