Looking back, the last 2.5 years has been a crazy, long journey — 60+ days of hospitalization, 2500+ chemo pills, 2300+ ml of antibiotics, 1400+ ml of steroids, 20+ spinal taps, 100+ clinic visits, numerous pokes / blood tests / transfusions…
SO SO glad that this is finally over!! Kid’s port came out recently. You can imagine our surprise when we saw the Deathly hallows symbol drawn on her chest bandage. What a sweet gesture by the surgeon, who got to know before the surgery that our kid likes Harry Potter! 💕💖
Many thanks to all our nurses, doctors, staff at Kaiser, friends, family and well wishers for your continued support throughout this period. We hope and pray that Apu stays cancer free, and has a healthy and happy rest of her life!
This is the longest phase of treatment for ALL, lasting anywhere between 1.5-2.5 years (longer for boys than girls). On the brighter side, the chemo drugs and schedule is fairly fixed and predictable, and life slowly starts returning to the new normal. On the harder side, the sudden reduction in clinic visits from daily (or multiple per week) down to monthly or bi-monthly visits can be hard, as it feels scary to venture back into the real world and send your kid back to school without knowing the ANC or immunity levels…
Delayed Intensification (DI) is considered to be the most difficult phase for most kids undergoing treatment for ALL. Roughly put, the first month of DI is like the induction phase (steroids again!), while the second month is like the consolidation phase. In addition, they introduce new drugs like Doxorubicin. In our kid’s case, due to severe allergies to PEG-asparaginase, she had to take 24 chemo injections of Erwinia, which made it more difficult (12 in the first month, and 12 more in the second).
Thanks to a combination of nutritious food (and green juice), positive attitude, eagerness to finish the intense frontline therapy (and good luck!), we managed to complete this phase with minimal chemo holds and complications. Details to come soon.
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. 😉
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 chemoshots 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 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.
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 🙂
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…
“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…
