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!