Here's a look into how we handle the medicines:
Matt is wearing gloves while he preps Mollie's medicine; this photo shows all the pills she takesin one week (not including zantac/prilosec and zofran for side effects).
Matt and I have worked out a system for keeping track of everything chemo-related. Every week we prepare Mollie's medications for the week ahead and keep them in a pillbox with AM & PM slots. All of these medicines are manufactured in dosages for adults, so we have to cut lots of pills in half. The dosages and medications are different for every day of the week, so preparing them ahead of time saves time and cuts down on errors. It also helps us plan ahead for when we need to get refills and new prescriptions.
When we give her the medications, we note the time and the dosage in a daytimer planner. We also use the planner to make special notes of any pains/side effects and clinic & hospital visits. This way, we have our own record of all of Mollie's medical care. Plus, whenever we travel or need to visit the clinic or ER, we can just grab the "chemo kit" and we have all the medicine, records, a Huber needle for port access, and a thermometer.
I don't know how other families handle this aspect of the treatment (and I'm interested if anyone wants to chime in!). It is a tremendous responsibility. I wonder how many kids actually get all the correct doses of medicine?? It would be so easy to forget, give the wrong medicine, or give the wrong dose. And what if you forget to fill the prescription and you're out of refills at 9 PM? We have had only one mistake that I can think of (although we have forgotten the evening meds and not remembered until the wee hours of the morning). Unless I am completely exhausted, I can't fall asleep without double checking that I gave Mollie her chemo that night.
Wow! I can't imagine trying to keep track of all those meds. I am in awe.
ReplyDeleteI hope your week goes well.
Tricia
P.S. Thanks for sharing your thoughts on my blog post a few weeks ago about how girls treat one another.
ReplyDeleteI appreciated hearing your input.
T
Wow, you guys are so organized, and I guess you have to be. You're right, I wonder if all kids get the right doses regularly, I know I would have an issue.
ReplyDeleteWow, I wish I was as organized as you. I am the only one that administers the meds. Believe it or not I've done very good at not missing doses (unless Gage passes out, then I give it to him the following morning). Although I do have to stop and think about what day it is and it is a little harder for dosage on 50% and 75% chemo weeks. I love your system and probably should adopt something similar, Mike would be lost if something were to happen to me but I think Gage could set him straight.
ReplyDeleteGlad you guys are doing well. Mark your calendar for May 18th
Nicole
Oh, Sarah. You guys continue to amaze and humble me.
ReplyDeleteNicola
Wow Sarah that is amazing! In our house we only have one person give the meds and we have done well with that. Since going off of treatment they added Septra and that is morning and night. We have missed a morning dose a few times but ended up giving it to him for an extra dose. I like your ideas to keep all the records. We take all of our meds at night it is much easier on him and if it causes upset stomach he sleeps through it with the help of Zofran. We are minus the gloves as well. We will not have any more children so we dont worry!
ReplyDeleteGreat Post Sarah!
ReplyDeleteI might get a seperate small planner for Mimi to mark things you have mentioned. I do have a calendar, that we get from clinic, with all the meds and doses next to all the meds that I keep in the original containers, I am always paranoid about confusing the pills.
This makes me laugh. For the first time ever, I am sitting here NOT giving Isa her meds because I didn't order the prescription. I will call tmw and get them and give them a day off.
ReplyDeleteI just leave them in the bottle until it is time then i open it up, cut it or not, hand them to her, hand her the water she takes them and we're done.
I've forgotten lots of times, and feel sort of bad, but not really, usually i make it up with a little bit more the next day. or not.
I am sort of a bad cancer mom in this regard. Good idea for a post. Maybe I'll steal it.. or maybe i'll just borrow yours because I am sort of not as good as you!
oh and just noticed the gloves... yeah, i quit using those early on. even though I swear it makes the palm of my hand tingle...
Hi. That is a great system you have. We use the same pill box you have, with AM & PM. We do make the pills right after clinic visit. Back in my blog I talked about us having to coat our pills. We still do that for Nick so it is a long process. I have to melt the starburst and then the pill in it and sometimes it takes up to 4 starburts. I do keep a book on his weekly dosage and always a copy of his counts go in a notebook. I still think you have beat for organization. Great job.
ReplyDeletePS We keep wondering when will our wine glass cabinet actually be one and not full of pills, starburts, cups, stickers and numbing cream.
Thanks for sharing. Karen Shannon
www.nicholasshannonrocks.blogspot.com
When my daughter was undergoing treatment for ALL, I had a calendar on the refrigerator of which meds she got on which day and whether it was am or pm. Sadly, it kind of becomes like second nature making sure meds are ready and measured out. Just becomes part of the daily routine! Well, here we are 3 years off treatment - YEAH!!
ReplyDeleteWe did a similar system with my mom. The key was writing down what she had when because she was a bit foggy headed with some of the medicines.
ReplyDeleteI want to write a post similar to this, but want to include other parents, sort of a compare and contrast. would you be interested in doing this? Perhaps also a photo...
ReplyDeleteyou can email me. dirty mouth mama at g mail dot com
I couldn't imagine keeping track of so many meds! My son has been on some meds, but thankfully not too many. And it is hard to remember!
ReplyDeleteI have one year old twins, and a 2 year old so always remembering my sons meds can be difficult.
During chemo he would miss the occasional mouth swab, and the week of MIBG scans he might miss a dose or two of lugols. He has even missed a dose or two of antibiotics.
And let me tell you what, I feel like the most awful mom when I forget!
I have notes everywhere on when he needs his meds right where I can see them, and he has a calendear that is just for him. I write down when he starts a med, what it is, and when he is supposed to stop, and what the dosage is, and I write down how he acted while he was on it. That does help...and I haven't missed any meds for awhile.
Thankfully he's just on his lugols right now and he'll start his antibiotic back up on Monday.
But it is hard some days!
Great job working out a system that works for you!
Sending warm thoughts your way and lots of prayers!