Phase 1: Induction

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Our kid was mostly in isolation during induction and had severe hunger pangs from the steroids; she experienced a wide range of emotions from fear, anxiety, and anger to crying hysterically.

Our kid was hospitalized for this entire phase of 30 days due to neutropenia. She shut down socially — did not want visitors at the hospital; didn’t even want to step out of her room to walk in the hospital. The medicines (dexamethasone or decadron) made her angry and irritable. She didn’t even want her dad, grandma or grandpa around.

Another hallmark of this phase was the severe hunger pangs. She literally stuffed herself like a pig — she would eat an entire adult serving of spaghetti and within half hour, feel hungry and demand more food. Surely enough, this would be followed by severe tummy ache, for after all, how much could a tiny stomach handle. The worst example of this was when she ate four corn on the cobs in a couple of hours!

The hunger pangs were coupled with intense food cravings. She would wake up in the middle of the night dreaming about donuts, or pizza, samosa, pani puri, idli… Our #1 task was to fulfill that desire in the morning. 🙂 While we were initially nervous about the crazy eating, and sudden gain in weight (she put on 10-15 pounds in a month!), this was good in hindsight since she almost stopped eating during the next phase of consolidation.

The induction phase was also marked by sleeplessness — she couldn’t sleep for more than 2 hours at a stretch, and had difficulty falling asleep again.

Our kid found her own ways to overcome the pain, boredom and isolation at the hospital — she spent hours playing Osmo tangram, numbers, words and coding games. She also got hooked to ABCmouse.com. Then of course, there was YouTube, and Netflix. She watched various movies and TV shows about princesses, fairies, ponies, and dinosaurs. The running theme was “be brave and kind”. We watched almost any movie or show that had a brave and kind character, happy ending, and gave hope that all would be well… 

Her addiction to the iPad was so strong that we called this the iPad or iMad phase 🙂

First round of surgery, lumbar punctures and port accesses…

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Seemed like everything that could go wrong went wrong — her port implant surgery on monday (day 3) took twice as long since the first implant did not work and they had to redo it; her chest looked like a battlefield with red marks and bandage everywhere; on day 4 the port leaked and her chest and neck got swollen and she cried a lot in pain; days 5-7 the needle in the port got dislodged many times and they had to do a ½ hr port re-access ritual that terrified her intensely. We were introduced to night terrors — she would wake up several times in the middle of the night and cry hysterically.

All she did during this time was cling on to me saying “Mama, don’t let them hurt me”.

I hugged her tight and kept reassuring her, “Don’t worry, mama is here, all will be fine”…

But deep inside, we were utterly clueless and helpless against the medical rituals, staff, medicines and their effects… How were we going to protect her? Would she be completely fine? We just couldn’t bear to see her suffer so much…

With everything spiralling out of our control, I prayed to God like never before that she be completely under His protection and He be with her and take care of her every moment. I prayed every waking moment. Somehow, this gave me the strength to cope with the vast uncertainty and suffering… It helped me as I struggled to stay positive and strong. It helped me assure my kid, my spouse, myself and other family members that all would be well, and that we’ld get through this united and stronger…