Month: January 2017

Phase 3: Interim Maintenance

Posted hopePosted in Phase 3: Interim Maintenance

Our two month long Interim Maintenance phase began in Dec 2016. Thanks to the season of joy and giving, we saw a marked difference in our kid’s attitude and energy levels. The excitement started with decorating our Christmas tree with ornaments. She then made a long list of her friends and family and individually wrapped 15+ gifts. We also did a lot of DIY food related projects. Like melting dark chocolate into different shapes (from dinosaurs to Fairy Godmother), and baking ginger almond cookies in cool Christmas shapes (gingerbread man, christmas tree, star, candy cane). It was her favorite snack, and a fun way to get more protein and good fat into her body. 🙂

One thing that I will never forget about this phase is our hospital stay around Christmas. As we walked into the hospital on the night of Dec 21, she wore her Santa hat and said, “Mama, I will listen to you and Papa and do everything the doctors, nurses and you say ‘coz I want to be back home in 3 days for Christmas Eve.” We knew it could take anywhere from 4-10 days to be discharged, but she was determined to go home in 3 days!

Despite the 24 hour chemo, frequent peeing (every 2-3 hours), 2 IVs (one from the port in her chest, and another from her hand), and disturbed sleep, she maintained a great attitude through the hospital stay. (Note to self: How on earth do kids manage to stay positive amidst such chaos? Wish we could learn!)

She surprised all of us with her strong determination to be back home soon — she drank plenty of fluids (water, green juice and nutritional shakes), ate as best as she could, read books, happily did arts and crafts with one hand, walked around the halls of the pediatric unit for 2+ hours each day, and chatted with nurses and other kids. The nurses smiled and remarked, “We see you wherever we go!”

We also had some pleasant surprises in store during this trip. The San Jose Sharks showed up on the next day and surprised the kids in the hospital with fun and gifts. Then came the highlight — Santa’s visit. She was so excited that she told every nurse and doctor about it for the rest of the stay!

One by one, we saw kids in the nearby rooms being discharged. It was Dec 24 morning, and still no signs of her discharge… The criterion was that the methotrexate level in the blood should be less than 0.4. Her levels were still 0.98 on the morning of Dec 24. There was no way we could make it home on time for Christmas eve…

Being one tough nut, kiddo wasn’t prepared to give up… She kept trying her best to drink fluids, walk her rounds, and think happy thoughts. We, on the other hand, were sad that she was going to be disappointed…

Then, something most unexpected happened. When the nurses checked again at 3pm, as if by magic, her methotrexate level was down to 0.39. She had just met the cutoff for discharge and we were back home for Christmas Eve. Hands down, it was the best Christmas gift ever! 🙂

In the following days, our kid developed some unpleasant reactions from the high dose methotrexate — she had severe sores on her lips (with pus), in her mouth and bum. Yet, she was in such high spirits during the Christmas holidays that she barely cried! She would cry while pooping, and in just a couple of minutes, be happily distracted and playing with her toys, or reading a book or doing some activity.

We were intrigued — while she was clearly in pain from the sores during this time, she suffered less ‘coz she wore a great attitude… What a lesson for us on the importance of a positive attitude and the difference between pain and suffering!

She continued eating and drinking healthy for the next few days. Her ANC was okay, and given the Christmas break, her friends were off school and she had 2-3 playdates, the maximum she’d had in 4+ months. What a treat!

Overall, Interim Maintenance was much easier than Induction and Consolidation phase, despite the four hospital stays. Thanks to her awesome attitude, we managed to squeeze in some fun even during the boring hospital stays. You can see some of it in this video — the emoji cap with hospital gloves as balloons is my favorite. 😉

Celebrating small joys of life

Posted hopePosted in Staying positive

People often get busy chasing big dreams and lofty goals — dream job, dream family, dream house, dream startup… Sometimes we get so busy that we forget to cherish the small things and celebrate the small joys of life.

Our kid’s cancer taught us that happiness is not in things outside, but in being grateful for what we have and making the best of it.

We learned to pause, savour the moment and appreciate the joy of small things… We built our own tents and pretended to camp, shredded paper into bits and made pretend snow in sunny California, talked goofy with Alexa, and did several things together — from baking, reading, art, board games, funny faces on snapchat, and silly singing to crazy dancing… This helped make our long and boring hospital stays and clinic visits more bearable.

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!