Month: November 2016

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!

The joy of Music & Dance

Posted hopePosted in Music & Dance

When our daughter’s treatment started, and her social life came to a grinding halt, we needed to think of new ways to keep her happy. She was a very active kid before, and now, she was suddenly confined to the four walls of the house (barring the clinic and hospital of course). No playdates, no school, no classes… That’s enough to drive any kid nuts…

Art, music and dance gave her something to look forward to — a new way to express herself and her feelings. Thanks to their combined relaxing effects, our kid morphed from a victim of cancer to a brave and positive-spirited fighter.

For months, our five year old had been asking for piano lessons. We didn’t take her seriously earlier. Now, we couldn’t bear to ignore her request. We searched around, got lucky and found a really sweet piano teacher who was willing to come home to teach our daughter. Our kid was so thrilled that she would practice her lessons eagerly. I still remember how excited she was when she finished the first book (level A). She couldn’t stop telling everyone at home about her graduation! 🙂

We also had fun making up our own silly songs. One of these songs became her favorite lullaby. Whenever she was sad, or in pain, or had a bad dream, we hugged each other and I would sing this song, while rocking her. She would fall asleep like a baby. When she was awake and felt silly, she would add her own funny lyrics to this song.

“She is so brave,
she is so kind,
she is so loving all the time.
She gives and gives
a lot of love.
She gives and gives
a lot of joy.
She is an awesome listener,
she is a terrific helper.
She is the best gift that we received,
we love her very much!”

Her other favorite songs were Rachel Platten’s “Fight song”, Katy Perry’s “Happy Birthday”, “Unconditionally”, “Roar”, “Fireworks”, and Shakira’s “Waka Waka”. She loved to dance to these songs. Besides fun, this was an awesome way to exercise and strengthen her muscles weakened by chemotherapy.

My fondest memory is when she completed the 6 rounds of intra muscular shots (one on each thigh, total of 12 shots) during the consolidation phase. She was so happy all the shots were over, that when she came home, she turned on loud music and danced like crazy for an hour!! It was the most innocent and beautiful victory dance that we had seen…  

Take a deep breath… Relax… Sleep…

Posted hopePosted in Take a deep breath

 

Our kid drew a doodle and told the child psychologist, “I can’t sleep at night”.

On most nights, she had trouble falling asleep. She started hating nights as it brought back ugly memories from the initial hospital stay — from being poked at night in the ER, to  port leaks, dressing changes near the chest, monitors beeping loud every now and then, nurses rushing in and out… The result was intense emotional trauma. She had multiple night terrors, where she‘ld wake up crying hysterically. She was so scared of what may happen at night, that she did not want to sleep…

Continued sleeplessness over weeks was driving us tired and insane. Desperate, we tried anything and everything that the doctors and our friends suggested. Bedtime routine of shower, followed by storytime, lullabies, calming nightlights, a cozy tent with favorite stuffed toys… Somehow nothing seemed to work… We went to the child psychologist, but that wasn’t of much help either…

After trying various things, a couple of ideas that finally worked are rocking her to bed (yes, like a baby!) while singing a song or telling her a story, and trying the 7 minute Heartfulness relaxation technique while lying on bed. This is a simple technique that progressively relaxes each part of the body. Every time we tried it, she and my husband were fast asleep before we completed the script! 😉