Parker receives six chemo drugs: Vincristine, Cyclophosphamide, Topotecan, Doxorubicin, Ifosfamide, and Etoposide. He’ll receive 6 cycles before surgery. He just finished cycle 4. After surgery, he’ll have 11 more cycles.
The first cycle included Vincristine, Cyclophosphamide, and Topotecan. He didn’t get sick. We were told it would be anticlimactic, and it was. You expect the worst right away, but no. Chemo wants you to have false hope.
His second cycle included Ifosfamide and Etoposide. He was sick nonstop with these two assholes. I guess I shouldn’t call them assholes…they’re killing Leonardo. We’ll refer to them as the not so pleasant drugs. When we went home, I thought the nausea would lessen. But there’s this thing called delayed nausea, and Parker had it. He quickly learned he couldn’t eat a full meal. He does better eating small amounts all day long. And if he doesn’t get enough sleep, it makes it worse.
We tried to find a good balance of getting him out of the house and time to rest. We went to a Mallards hockey game, when they went in to over time, Parker let me know he couldn’t stay. We started walking to the car, and he had to stop, afraid he was going to be sick. We took him to watch his friends play basketball. At half time, he told me he needed to leave. The minute we stepped outside, he leaned against the school and got sick.
We had three weeks off of those not so pleasant drugs. Things started to look up after two weeks. We took him the boys’ basketball practice and he had such an amazing time. They gave him a huge basket full of awesomeness. He watched them practice and even shot a few baskets himself. Most importantly, he didn’t get sick. He was smiling and laughing, and I soaked up this moment of bliss. Twice he was able to visit a friend’s house without getting sick. One of the moms said that her son told her his face and stomach hurt from laughing so much with the boys!
It felt like just when he started to feel better and have more energy, we found ourselves on the way to get the not so pleasant drugs again. I dreaded it. Parker dreaded it. He said, “I don’t want to go, mom.” I replied, “I don’t want to either, Parker.” Five minutes later he was dancing in the dining room and laughing. I just wanted to cry.
So we reluctantly made our way back to the hospital, only to be sent back home because his blood counts were low. What a weird feeling though. We were both happy to be going home, but anxious to start chemo and get it over with.
After a couple of days and getting the phone call that his counts were high enough to start chemo, we again made our way back to the hospital. For this cycle of Ifosfamide and Etoposide, they administered anti nausea drugs around the clock instead of as needed. These make him incredibly sleepy. I watched him sleep 22 out of the 24 hours in a day, with the exception of him getting up and going to the bathroom every two hours. I know I annoy him when every time he wakes up I ask him a series of questions. How are you feeling? Do you have any nausea? Are you hungry? How about I order you something? Or would you rather have something from the cafeteria downstairs? But usually before I get an answer, he’s asleep again. Maybe I should try one question at a time.
On days one and two he was able to eat without getting sick. On day three he slept through lunch and got sick after taking Nystatin, a liquid that he swishes around in his mouth and swallows to prevent mouth sores. He woke up around dinner time and ate 3 slices of pizza spread out over a couple of hours. On day four he only ate one bite of a breakfast sandwich and a small piece of pizza for lunch. That’s it. When we brought dinner in the room, he got sick again. He said it was the smell that got to him. It was chicken strips, mac & cheese and potato wedges, all of which he had previously eaten and liked at the hospital. From now on we’ll be eating in the family room or cafeteria. Today was day five, our last day in the hospital for this cycle. We were worried we wouldn’t be able to go home because Parker wasn’t drinking, and he couldn’t keep much down. He was determined to get home though, and he battled through it. Fighting to keep sips of apple juice down.
So cancer does suck. Big time. It is ugly.
But remember when I said cancer won’t make our lives ugly? It hasn’t. He hasn’t lost his smile. He hasn’t lost his laugh. He hasn’t lost his sense of humor. He hasn’t lost his great attitude. My son is Awe.Some.
Even after getting so sick, Parker remains strong. He hasn’t lost his smile. And he definitely has not lost his sense of humor. He enjoys making fake vomiting sounds to see if he can get me to jump up and rush to his side. It works every time. He got an immense amount of joy from shooting innocent bystanders with saline syringes during his last stay at the hospital. He still cracks jokes, and he still gets that sly grin on his face when he has something sarcastic to say. And he still has the best giggle. His attitude and positivity is admirable. He has handled this with such grace.
Parker is remarkable, amazing, outstanding, incredible, wonderful, marvelous, splendid, and fantastic! I can’t accentuate enough how great he truly is.
He’s absolutely Awe-Inspiring. He’s my hero.