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?

July 21st Wednesday: A Day of Birthday songs

Wednesday morning came waaay to early for all of us but it was going to be a good day. The first one through the door to wish Charlotte a Happy Birthday was her new friend Brynn. We had just met this sweet girl and her parents in the hall the evening before. Brynn is 10 and had just been recently diagnosed. (It always really hard to see new families admitted here, this is not somewhere you want to meet people!) Anyways Charlotte just loved her, the two of them played in the hall for an hour, Brynn was so great and the two of them were inseparable. She came with a gift and a fancy card she had made and during breakfast time since she was not allowed to eat as she was getting ready for surgery that morning.

Then the nurses and our hospital staff friends came by with a helium balloon, cupcakes and presents. Everyone sang, then she sang the first line over and over for the rest of the day, it was pretty cute. It made me a bit sad though; I had stuff waiting in a box at home ready for her second birthday party. She also got some stickers from a few different nurses and doctors we saw in the hall, everyone seemed to know it was her birthday.

Oma and Opa came by with her aunties and uncles with some gifts and birthday hugs. She always gets so excited to see her aunties and uncles, her little face just lights right up. Ans the fact that we all sang to her again seemed really exciting. So cute.

Our friends at the RMcD house made a fancy shmancy birthday cake, two different flavoured tiers. And they made her a “happy birthday video” of everyone at the house singing and wishing her the best. That all just about had us in tears too... of course I was way overtired and it would not take much to set me off that day.

There was also a bingo game going on that afternoon. Charlotte loves to “dab,” not necessarily the numbers called but all of them as fast as she can. She usually has a full blackout by the time they have called the third number. Luckily mommy’s card was a winner and she got to pick out a couple of toys. Bingo at both the hospital and RMcD is great, the kids love it! They start by wheeling out a huge cart of toys that could give Santa’s sleigh a run for its money. Then we lay out some newspaper and dabbers for the youngest kids to muck around with while the older kids all eyeball the cart. We usually play enough games that everyone wins a prize or two. All the toys have been donated; I think most come in from Christmas toy drives. A volunteer at RMcD house says that the store room fills right up at Christmas and they pace them a bit to last the year. So if you have ever donated toys at Christmas, thank you- these kids enjoy them all year.

While we were finishing up bingo our doctor told us she thought Charlotte was doing well enough that we could be discharged to RMcD. This was wonderful to hear, when we were first getting prepped for this round of chemo it sounded like we would be admitted for the bulk of the round. So getting discharged after only a week was a nice surprise. So after some teaching about her new meds we were out the door by 4:00.

Here we are back at the house with our friend Chloe.

July 20th Tuesday: The dragon rears its head

Tuesday night was my turn to stay at the hospital, Charlotte went to bed well and it seemed like it was going to be a fairly good night. HA. At midnight she woke up with her blood pressure check. That got her a bit upset. The first one conked out so we had to try taking it a second time. That got her a really upset. Then since she is on full hydration her diaper needed changed too... that got her really mad. Then she blew a full out tantrum, thrashing and bashing and screaming at the top of her lungs. Nothing I or any of the nurses could do would settle her down. She started throwing herself around in her crib, she bashed her head on the rails a few times and it did not even faze her. I was so worried that she would hurt herself! Then she started yanking on the IV lines, the whole pole was swaying and rattling away. Her syringe line came unhooked at the pole and was flipping around in the air. I was scared she would pull the line from her chest. So I took her back out of the crib and just clamped her to my chest as tightly as I could (but really how do you hold onto someone writhing and wrenching like that!?) Poor little girl, she was so mad that she started pulling her hair out and clawing her face... that wasn’t getting her anywhere so she turned on me. Yanking fistfuls of hair, she clawed away at my face and then discovered something that did make me flinch... she chomped down on my shoulder so hard her little head shook! I really pitied all the other kids in our wing that night for the screaming and yelling that came out of our room. I held on until my arms could not take any more and put her back in the crib while I finally phoned over and woke up Rob asking him to come and try to settle her. She was thrashing around again so I picked her up and clenched tight while she continued biting and scratching. Rob arrived to find us both standing in the middle of the room crying. Thankfully Charlotte had lost some steam by then and surrendered easily into her daddies arms and was quickly sound asleep. By 2am we were wondering what to do, what if she woke up like that again??... so we both stayed and slept at the hospital... needless to say all three of us were pretty short on sleep by the morning of her birthday. In the morning we assessed the damages. Charlotte had a huge scratch across her cheek with dried blood, her hair at the front was thinner, her eye was all scratched around and puffy. I had a blood blister on my upper arm from one bite, at least 4 good bruises on each arm-only one broke the skin though-I was so glad that I had been wearing a tee shirt and a sweatshirt! My glasses had a new scratch from when they hit the floor. All three of us looked like we had a pretty rough night. So where did that come from!?! I don’t know but we sure don’t want to see it again! She had been on a small dose of steroids as a preventative to help protect her lungs from one of the chemo drugs... maybe it was that. Maybe my poor little Charlotte just had enough. Thankfully that evil has not reared its head again... except for the biting. She only tries to bite mommy when she’s mad though, never daddy-I’m not sure what to think about that. I know that daddy is the favourite but this is a little extreme. I’m trying not to take it personally- it’s just the chemo talking I tell myself.