My son stopped walking during Induction. About four days into treatment, he stumbled, fell and wouldn’t walk again for many weeks. We were well into Consolidation before he walked again, and even then he had to hold onto something to remain upright. I recall my two-year old calling out to his father, “Look! Nico walking!” The worst pain he ever experienced was in his legs and occurred during Delayed Intensification, after Vincristine and during the withdrawal of the second steroid pulse. We were giving him Oxycodone around-the-clock then. We got through frontline, but my son still suffered from obvious neuropathy. His left leg seemed to drag a bit as he walked. His left foot flopped about when he climbed stairs. Throughout the years of Maintenance therapy, he required Oxycodone after he received his monthly Vincristine dose. His oncologists discussed adding prophylactic medications to treat his neuropathy or possibly lowering his dose of Vincristine if things worsened, but luckily he eked out of treatment only requiring physical therapy.
Now we are more than 17 months off-treatment. He has not told me that his legs hurt in a long time. About 6 months ago, he said it didn’t feel like there was sand in his shoes all the time anymore. And although more than three years of chemo surely stunted his growth, and he is still small, he no longer sticks out when he is among his peers. One of my son’s best friend signed up to run in a racing series, and Nico wanted to join him. Nico has never raced before, and rarely runs except during the course of normal play. But we entered him, and spent race day preparing him to come in last - “This is just for fun” “Winning doesn’t matter” and “It’s your first run, so don’t be disappointed if you’re not as fast this time.” I also prepared myself for his inevitable tears at the finish line, and told myself it was still a good learning experience even if it ended in disappointment.
When the first pack of runners rounded the field, and headed towards the finish line, I did not expect to see my boy there. But there he was, running his heart out and keeping up. He came in 5th place out of 20 runners. Winning doesn’t matter. But today, we won.
Now we are more than 17 months off-treatment. He has not told me that his legs hurt in a long time. About 6 months ago, he said it didn’t feel like there was sand in his shoes all the time anymore. And although more than three years of chemo surely stunted his growth, and he is still small, he no longer sticks out when he is among his peers. One of my son’s best friend signed up to run in a racing series, and Nico wanted to join him. Nico has never raced before, and rarely runs except during the course of normal play. But we entered him, and spent race day preparing him to come in last - “This is just for fun” “Winning doesn’t matter” and “It’s your first run, so don’t be disappointed if you’re not as fast this time.” I also prepared myself for his inevitable tears at the finish line, and told myself it was still a good learning experience even if it ended in disappointment.
When the first pack of runners rounded the field, and headed towards the finish line, I did not expect to see my boy there. But there he was, running his heart out and keeping up. He came in 5th place out of 20 runners. Winning doesn’t matter. But today, we won.
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