Saturday, July 31, 2010

July 22nd Thursday: These changes will not be easy!

Warning... this post is just a boring ramble, nothing really personal about Charlotte. There are two more new posts before this one. Feel free to skip over this unless you really want to know what meds she is on and what she is eating.

A whole bunch of new medicines were added to her regime. Most are just preventatives’, these new chemo drugs and the stem cell ordeal makes her way more susceptible to everything. We now have an entire calendar page dedicated just to meds... One (to prevent pneumonia) she takes twice a day but only on Thursday, Friday and Saturdays. One (to prevent lung inflammation) she had to take a full dose twice a day on day 1 and 2, then a half dose twice a day on day 3 and 4, then day 5 and 6 we give her the half dose just once... something like that... she has ones that are with breakfast (magnesium supplements) and ones that are at bedtime (to prevent fungal infections, and seizures). She is still on the fun G-csf needle that we have to give in her arm each night. One med to keep her regular- as needed, which thankfully that has not been a problem. And then good ol’ Gravol whenever she needs it, which has turned out to be every 6 hours like clockwork- even through the night or she wakes up puking at 2am (why did that take us three nights of changing pyjamas to figure out?) Luckily Charlotte loves helping with the laundry and even on a grumpy day this cheers her up.

Crazy right! None of this is even her chemo or the related drugs that they give her while we are admitted.

Now that we are knocking her system down harder we have to be way more cautious with her diet too. This is going to be the one thing that will drive everyone crazy! It’s not just for these three months while she is getting the chemo but for an extra three months after as well. The dietician gave us 6 pages of reading material. Nothing with the slightest possibility of mold that cannot be scrubbed... no berries, no grapes, no cherries, no bananas that have any brown. No cutting off the end of the cheese and using the rest of the block, or am I the only one who does that? No leftovers, not even just from that morning, nothing. Nothing unpasteurized like feta, brie cheese or honey. No home canning or jams- they might not have gotten up to high enough temp. No lettuce- or any veggies you can’t scrub it enough to get it clean, rinsing will no longer do. No buffets, no potlucks, no sharing... unless she goes first. Nothing from dispensers- no fountain pops, DQ soft serve ice cream, or slurpees. Nothing from bulk foods. We are supposed to use things in single serve pkgs if we can. She needs her own personal things like butter and peanut butter jars. No lunch meats, nothing from the deli really or anywhere we don’t know how long it has been sitting out. Nothing that might have raw egg product like icing. Nothing nothing nothing... we get it. Luckily Kraft Dinner is OK!

I wonder if the dietician knows that two year olds eat things off the floor when no one is looking. I wonder where candy bits off your shoe fits in on her list. Or the rock hard piece of granola bar we found in the playroom. Or even some of the toys in the playroom that make it into her mouth, where is Lego on the chart? I guess we will do the best that we can and leave the rest of it to her guardian angel; I wonder if he gets paid overtime for things like this?


  1. Does she still lick everything she comes across?? I keep thinking about when she licked your feet!! Maybe a muzzle? Is that allowed? Although, she'd probably just lick it. ;)

  2. Anonymous7:29 AM

    That sounds very similar to the Candida diet Jeremy had to be on for 3 times - 6 weeks at a stretch. And you're right it is not fun, I had to pick him up at lunch every day because there was nothing I could pack him that he could eat. But in his 7 year old wisdom Jeremy said "Let's concentrate on the things I can eat, instead of the things I can't . The list is shorter that way"

    PS: I think you may have found a new career to add to your resume. You are a great writer -just the right balance of facts and random thoughts and always a bit of humor through it all.

  3. Anonymous9:23 PM

    Hang in there. It's nearly as hard getting a teenager to follow the rules too! Tom hates all his dietary restrictions...But the end result is worth it! Happy Birthday to Charlotte and thanks for keeping us all up to date. Sorry to hear about that bad night. Hopefully it was just a bad dream....

    Marilyn F.

  4. Anonymous7:16 PM

    I am sorry it took me a couple days to write in here- Geez what a coincidence running into you guys in clinic!! We have been following what we heard was going on- and now we can finally read about it!
    We are praying for Charlotte- and for your family as well.
    Thinking of you guys- and hoping the last round goes as planned!
    Stephanie, Paul, Gabriel, Shaine "TANK" and Darius
    The Lynn Family