Maintenance Day 347: Medication

We have been blessed from day one with a child that doesn’t mind taking medications. Perhaps it is her mother’s background coming out in her. We never had to force her to take them. She may protest and say it’s yucky but she always drinks it all up and sometimes even licks the spoon clean. We taught her at 2 1/2 years old how to swallow small tablets but she prefers the liquid forms better. This is a peek into our medicine cabinet this month:

*Purixan (6-MP): 2.3 mL every night (must be given 2 hours after a meal so we give this at 9:30 every night while she is sleeping) *prednisone: 12.5 mg twice daily for five days after IV chemo
*famotidine: 1/2 of chewable tablet twice daily during and one week after prednisone. Once daily all other days to protect her stomach *methotrexate: 0.5 mL once weekly, only on weeks in which she doesn’t have an LP *Bactrim: 12 mL every Saturday and Sunday
*fluconazole: 2.5 mL once weekly for her foot infection
*clotrimazole cream: apply to feet twice daily (since we have trying everything for this infection this combination may vary daily but we are throwing everything at it) *miconazole spray: apply to feet twice daily
*various essential oils: soak/apply to feet daily
*solarcaine spray: apply at bedtime as needed for itching
*Selsun Blue: wash feet three times per week
*ondansetron: 2.5 mL every 4 hours day of chemo and at least twice daily for 3 days post chemo and as needed other days *hydroxyzine: as needed for nausea, itching, sleep
*Miralax: 8.5 grams up to twice daily as needed for constipation
*morphine: as needed for pain (since she can’t have ibuprofen or Tylenol, the morphine is for all pain)
*Biotene mouth rinse: should be done up to four times per day to prevent mouth sores. Scarlett hates this so I will admit that this one gets skipped most days
*Emla cream (lidocaine/prilocaine): to be applied to port site 30 minutes prior to appointment *IV vincristine: every 28 days
*Intrathecal (spinal) vincristine, methotrexate and ARA-C: up to every 28 days through lumbar puncture *IV hydration: before every infusion
*IV Versed: light sedation before every LP

I think that’s it, but I could be missing something that’s been in the back of our cupboard for a while…or something obvious. I have about 10 different alarms set on my phone to be sure that we remember everything. If we had 10 medications to give at the same time every day it would be so much easier. But Scarlett does such a great job that we have absolutely no reason to complain. This combination of medications is not only allowing her to survive comfortably but she is thriving! before diagnosis, Scarlett was an inch taller than Evangeline. Since she had been in maintenance, she has gone from being 1/2 inch shorter than Evie to being 1/2 inch taller! She has gained 11 pounds and is now one pound heavier than Evie. Evie can now go back to being called our little Pippy (Pipsqueak).

We are so grateful to live in a time in which we have all of these wonderful medications to save our children. I am blessed to have an extensive understanding of each of these medications and what I can suggest/give for ailments that arise.

But this list should be so much shorter. ALL has been treated with the same medications for over thirty years. There have been just a handful of new medications approved for pediatric cancer in the last twenty years. You cannot simply take an adult chemo agent and give a smaller dose to a child. Children have different cancers, different bodies, different processes for metabolizing medications, different reactions. And the long term effects are so much more important in children because they have so much more of their lives left to live. You have probably seen me talking about “we deserve more than 4”. Only four percent of funding goes to researching and finding a cure for childhood cancers. There are so many promising treatments on the horizon. Two new medications for neuroblastoma. A new treatment option for leukemia that may CURE it in just a very short time. With all of these breakthroughs with just four percent of funding, how much more progress would be made with 10% or 25%? There is currently a bill being introduced in Congress called the STAR act. This bill aims “to maximize discovery, and accelerate development and availability, of promising childhood cancer treatments”. It currently has 177 co-sponsors in the House. It’s prognosis when written? A 5% chance of passing. We need more. (End of political rant 😊)