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. 😉