Author: hope

Transition back home

Posted hopePosted in Phase 2: Consolidation

    

The transition back home was a bit rough initially. From mundane things like keeping the house sanitized, trying to restore “new” normalcy after an insane month of induction at the hospital, to continued sleeplessness and the emotional trauma of losing hair.

The transition from one month at the hospital to back home was a bit hard. We were concerned about her safety, physical and emotional well being. Of course, there were the additional concerns about keeping the house clean and germ free. And you couldn’t just outsource chores or get house cleaners etc, since each visitor was a threat to her low immunity.

Keeping one room in the hospital clean is quite easy, but keeping an entire house spot clean is not at all trivial! We changed the bed linens everyday, swept and steam vacuumed the house everyday (eventually this became every couple of days or once a week). This was quite tiring, especially since we also had to cook, wash dishes / clothes, while engaging her and keeping an eye on her safety all the time…

Thankfully, grandma and grandpa were able to help with some of the household chores.

It was hell on the emotional front. Our kid hadn’t seen herself in a mirror for 1 month, and now, she couldn’t believe what she saw in the wall-to-wall mirror door in our master bedroom. She cried that the nurses and doctors at the hospital had ruined her life — she felt ugly with a puffed football-like face and little hair on her head. “How can I go to school like this? My teachers and friends will not recognize me and will laugh at me”…

Our immediate project was to cover the mirrored doors, hoping that out of sight would be out of mind. Still, she would wake up crying hysterically in the middle of the night, being violent and hard to control. At those times, our #1 concern was her safety, that she should not fall or hurt herself unknowingly, as it could lead to internal bleeding and unnecessary surgeries or complications…

She experienced an intense emotional turmoil. “Look at me, this is not a life. I don’t want to live like this. I want to kill myself”. It broke our hearts to see her like this…

During this period, we watched inspiring movies like the “Beauty and the Beast” and discussed how looks don’t matter, and what matters is a brave and kind heart. We went on a trip to a good hair salon and she saw me cut my waist-long hair very short. I told her, “See, Mama cut most of her hair, but she’s still the same, and loves you very much!”

Later, she cut her hair too (or whatever was left). We donated our hair to “Wigs for kids“. She was happy that our hair was going to help sick kids feel better, by making fancy wigs for them. We also ensured her that after the treatment, her hair would grow back nicer and stronger. And we could come back to the hair salon to get any cool hairdo of her choice. She seemed much happier…

Overall, the induction phase was like living on a volcano, not knowing when it would erupt… It was over a month since she (or us) slept for more than 1-2 hours at a stretch.

Phase 1: Induction

Posted hope1 CommentPosted in Phase 1: Induction

    

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…

Posted hopePosted in Phase 1: Induction

  

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…

Diagnosis. First day…

Posted hopePosted in Diagnosis

 

“No, there has to be some mistake. This can’t be happening to our five year old”…

It was the summer of 2016. Our five year old daughter was having a nice relaxed vacation with grandma and grandpa who were visiting. She was as happy as could be — many playdates, sleepovers, and visits to the beaches and parks. Time flew by and school was about to start soon.

The week before school started, she was mildly lethargic. She was happy to be running up and around in the house, but strangely, did not want to visit the park. Her appetite was a bit poor, and she seemed a bit more irritable than usual. Nothing alarming, just a few subtle changes…

Then, one afternoon, a couple of days before first grade started, she came down with a 102 fever. Although she seemed fine after a Tylenol, I took off from work the next day and decided that it wouldn’t hurt to visit the doctor. It had been a while anyway since we visited the doctor.

The pediatrician examined her, and assured me that our kid was completely fine. On a normal day, I would have been happy to hear that. But my instincts told me that something was a bit off — maybe our kid was showing early signs of anemia? The pediatrician asserted that our kid’s growth and vitals were fine, and the lethargy was probably just from growth pains…

After my continued insistence, the pediatrician decided to order a blood test.

Our kiddo was surprisingly brave and didn’t even budge as the nurses drew her blood. Infact, she was so fascinated to see her blood go into test tubes, that on the way back home, she kept asking me a ton of questions about blood and what they would do with her blood. We discussed what nurses and doctors do, and she even declared that she wanted to become a doctor. 🙂

The rest of the day was quite normal. She played games with grandma and grandpa as usual. After dinner, I gave her a shower and we picked a favorite book to read at bedtime. We were tucked in comfortably under the blankets, and were discussing stories, laughing at silly things and reading our favorite book. It was a fun Friday night and we were making plans for the weekend.

Everything was fine… until the phone rang…

We got a call from Kaiser. A pediatrician was telling me that they analyzed my daughter’s blood and found something abnormal in her cells. She asked us to immediately admit our kid to the hospital.

“What did you just say?”, I stammered in confusion. The pediatrician apologized for having to break the news over the phone and mentioned the C word… My heart froze… I hung up…

There had to be a mistake somewhere. This could not be happening. Afterall, our kid was so young and healthy…

We mindlessly tossed a few clothes in a backpack, and took our kid to the ER. It was 10pm, Friday night. I was praying with every breath that the doctor made a mistake, and that our kid should be completely fine…

She was diagnosed with Acute Lymphoblastic Leukemia (B-type). What followed was the worst nightmare. She was admitted in ER, poked a few times to start the IV, and was crying in fear while nurses, residents and doctors rushed in and out of the room performing chest xrays and one test after another… The craziness continued through the night until 4am.

A myriad of feelings arose, ranging from utter helplessness with life being hurled crazily out of control; a feeling of isolation where everyone seems to care but no one really understands; despair from dealing with the vast uncertainty of events ahead; heightened mental confusion from the overload of medical terms and decisions to be made; bitterness and anger at why did this happen to such a young, happy and innocent child; extreme nervousness and doubts on whether things will ever be fine again…