Day 1 3F8 complete: lord give us strength
Cancer is trying to take a little girl named Charlotte and break her. But we won’t let it.
We arrived with a happy Charlotte who wanted to skip, run and play. A chatty Charlotte who was coloring in one of her coloring books until 8 minutes into the 36 minute immunotherapy infusion. We left 8 hours later with a Charlotte who looked broken, in pain and unable to walk due to nerve pain in her feet, a drowsy Charlotte with 3 prescriptions in my hand for side effects and pain management.
Today was hard to describe but it is over. The 3F8 immunotherapy Charlotte is receiving is done outpatient in the MSK day hospital and so she is now back here at RMH recovering. The infusions are 3 days a week (MWF) and are fast and intense. They are so painful but the pain isn’t doing any actual damage she needs to heal from, but is more perceived nerve pain. Older kids can describe it as your body burning on fire. Strong pain narcotics are administered in a delicate balance with the 3F8 and the body’s state of shock response. Our girl did require Narcan rescues as she passed out and became unresponsive. I’m praying this reaction is few and far between, but the staff said she tolerated everything wonderfully for her first day.
Back at RMH we cuddled and played “I love you morether than” which usually makes her giggle. And she giggled. Then she fell back asleep. She is not broken. She will recover and we will do it all over again on Wednesday and somehow again on Friday and then somehow over and over one week a month for the next 4 months. I know she is often the smiling happy childhood cancer hero. But this is part of her reality. She sure earns every smiling, happy, carefree day she gets. #Charlottestrong
We arrived with a happy Charlotte who wanted to skip, run and play. A chatty Charlotte who was coloring in one of her coloring books until 8 minutes into the 36 minute immunotherapy infusion. We left 8 hours later with a Charlotte who looked broken, in pain and unable to walk due to nerve pain in her feet, a drowsy Charlotte with 3 prescriptions in my hand for side effects and pain management.
Today was hard to describe but it is over. The 3F8 immunotherapy Charlotte is receiving is done outpatient in the MSK day hospital and so she is now back here at RMH recovering. The infusions are 3 days a week (MWF) and are fast and intense. They are so painful but the pain isn’t doing any actual damage she needs to heal from, but is more perceived nerve pain. Older kids can describe it as your body burning on fire. Strong pain narcotics are administered in a delicate balance with the 3F8 and the body’s state of shock response. Our girl did require Narcan rescues as she passed out and became unresponsive. I’m praying this reaction is few and far between, but the staff said she tolerated everything wonderfully for her first day.
Back at RMH we cuddled and played “I love you morether than” which usually makes her giggle. And she giggled. Then she fell back asleep. She is not broken. She will recover and we will do it all over again on Wednesday and somehow again on Friday and then somehow over and over one week a month for the next 4 months. I know she is often the smiling happy childhood cancer hero. But this is part of her reality. She sure earns every smiling, happy, carefree day she gets. #Charlottestrong
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