Category: Phase 2: Consolidation

Phase 2: Consolidation

Posted hopePosted in Phase 2: Consolidation

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 chemo shots 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!

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.