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?

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.

Saturday, July 24, 2010

July 18th Sunday- Stem Cell Day

On Sunday 18th she was given her first re-infusion of stem cells. That was a very anticlimatical event; there were seven different nurses and technicians in our room, they did full vital signs on her every 3 minutes... the infusion lasted a whopping 6 minutes and she slept through it! Blip-we’re done. WHAT!?! It took two days and over 12 hours to harvest these cells and that’s what it comes to!?! She will get two more infusions, but really after all we went through to get these things!

Then came the smell...oh the smell, it affects different people differently, some don’t even smell it, some can’t walk into the room without turning green... everyone has their own description of it... Some say it smells like bad fish, to our doctor cooked asparagus; to me it smelled like creamed corn. I could smell it right away on her breath, the anticoagulant that they use to help preserve the stem cells while they are frozen. A few hours later and I was one of the lucky ones turning green... please don’t ever ask me to eat creamed corn again. Luckily for me it was Robs turn to spend the night that night and by the next night it was not so potent smelling. The next couple of days were spent hanging out in the hospital, Charlotte was hooked up for hydration most of the time but we did get off of isolation so we were able to take some wagon rides around the nurses’ station again.

July 13th to 17th- Starting new chemo rounds

So back where we left off... Tuesday 13th Charlotte had her LP, it came back clear- which nobody actually told us til way later but since we started the chemo right away we figured it must have been clear. Wednesday 14th we were admitted at 8:00pm, this time they were expecting us. She was hooked up for pre-hydration for the night. Chemo started Thursday 15th Dun Da Da Dun... New set of drugs to start, this is the phase called “Consolidation,” we were warned that these drugs will knock her down even harder than the stuff we have been through.
She actually was only given drugs for two days this time but the doses she got didn’t come without a price! One of her drugs, Thiotepa, is excreted through the skin, if left on her skin it would burn... That means that we had to wash her down every 6 hours, this was not fun! Even during the night. Have you ever had to wake a two year old up at 2:30 to give them a bath and then get them back to sleep? Not just a bath either but a full dressing change, we had to remove stickers and clamps to wash underneath then reapply them, only to have to rip them off 6 hours later! Never will I wince taking off a simple Band-Aid again... poor little sweetheart, her skin was so red and raw.
The kids usually get a tan from that drug too, and then we were told that their skin typically peels off like after a sunburn. AAAAHHh. Luckily Charlotte skin did not tan or peel too much, we must have done a fairly good job with the baths. The nurses all wore full gowns and gloves to come in to see us and we were put on isolation the whole time too so nobody accidentally touched her skin, as it was carcinogenic to others. By the end of each day Rob and I felt like we had itchy insulation on any skin that was exposed to her, extra scrubbing in the shower for us too. Initially we were told that we would have to bath her for 24 hours after the last dose that means we had to wash her for four days... when the doctor told that it was actually only while she was being administered the drug it was like an early Christmas present! Yahoo only washing her for two days! That was long enough. But she did pretty well; we found a treasure trove of warm blankets in the unit and took advantage of them during the nights.

The other “big” drug she is getting has more of the same side effects as the drugs during the first rounds... nausea and vomiting, loss of hearing, loss of electrolytes, decreased kidney function, decreased liver function, loss of hair... although her hair has been pretty stubborn at staying in, I guess red hair is more tenacious than other colours. She was fairly nauseous but regular doses of gravol and ondans kept it in check. Actually she did pretty darn well during the whole thing, to compare day to day with her first rounds she was eating better and happier (so far.)

Then on Saturday we had a “day of rest,” that’s what they wrote on our schedule, it was not exactly restful but we were not given any drugs. So far everything has been fairly smooth for this round, lets hope it continues that way.
Here is what her beaded journey looks like, the Kids Cancer Care have a program for the oncology kids to track their journey. We were given a journal book with a key for each colour of bead. A black bead is for a poke (IV, Inseflon insertion,) a red bead is for a blood or platelets transfusion, light wood coloured ones are for chemo drug days, Green are for her dressing changes, the little gold disks for her G-CSF shots (the really expensive ones-hence they are gold!) We also added a few of our own to the journey, I bought some little purple flowers to show when Yolanda gets to visit and some little hearts for when we got to go home for a few days. I think it will be a pretty neat learing tool to talk about with her in the future.

Tuesday, July 20, 2010

July 9th to 13th- Fun at Home

Just wanted to share a couple of pictures of the girls having fun at home... I actually only took these few our whole week, I guess we were too busy trying to squeeze as much as we could out of the days that we had. The weather was nice... unfortunately one of Charlotte's meds makes her photo-toxic... shes not supposed to go out in the sunlight, not even indirect sunlight. We definitely bent the rules here!

OK, now just sit here nicely and its too bright! The ever present snack cups... cant try to put weight on one kiddo with out the other one thinking she is missing out on some snacks!
Here we are on the way back up to Calgary... somebody sure knew she was being cute because I got a lot of good pictures. This was Tuesday July 13th.

Thursday, July 15, 2010

Our trip to the Calgary Zoo... and back home again!

So Charlottes MRI was Tuesday July 6, then we were to be in the clinic for Thursday to start the next round of chemo. So what did we do on Wednesday? We were lucky enough to get a trip to the zoo in! Yolanda was here and we had a full day between Charlottes appointments... the weather cooperated and we even had grandparents to help out. The RMcD house gave us tickets so we could go and enjoy a day out. The girls loved it.
We brought two strollers so there would be no “my feet can’t walk” whining and covered most of the park. I think the girls had the most fun watching the monkeys although when we got back to RMcD a lady asked Yolanda what her favourite animal was and she said the snakes!?! I don’t even remember her pausing at the snake’s tank. (This is funny because on holidays in January we went to an aquarium and at the end she said her favourite was the dolphins... I was sure we had not seen any dolphins that whole day... once I went back though my pictures there was some cement ones in a fountain. Sometimes I wonder about what goes on in her head too!)

There was a cute baby gorilla out playing with his blankie, and the girls liked the butterfly gardens too.

Thursday we were dragging our feet and trying to get mentally prepared to get started with her chemo, the new “hard” phase. We were in clinic around 9:00 but the desk did not have an ID band ready for Charlotte... they had no record of her supposed to be coming in at all that day(and no drugs ordered.) So we thought maybe we were supposed to be over in the ward and that we would be given a room right away... nope they were not expecting us. Back over to the clinic we were sitting in the waiting room and a Doctor breezed out to see us, “Hi are you here to hear about her MRI results? The preliminary results came back clear and everything looks great.” Then he noticed that we were expecting some more information from him, “So, do you have some other questions....?” Apparently he had not heard about the “We are here for some non-existent chemo” part yet so we filled him in on our confusion. He looked quite surprised and said he would look into it. The confusion is stemming from the fact that our primary nurse has been quite sick for the past few weeks and three others are trying to shift his patients around... as usual we must have slipped through the cracks. So we met another new primary who promised she would get us all sorted out. So their solution... “Why don’t you go home until Tuesday 13th, then on Tuesday come in for her LP (lumbar puncture or spinal tap) Wednesday night you will be admitted for pre-hydration and next Thursday she will start her chemo.” Well we were both mad by the time she stopped talking... we were just not sure who we were mad at. LP? Why was this the first we had heard about that? Why was it not done while she was under for her MRI yesterday? Why wait and have to put her under again? Why could we not have just have waited until next week and just done the MRI then too... instead of bringing us up to Calgary for just the MRI and now sending us back home? Why do we have to wait a week, whose idea was that- her blood counts were ready, it’s just the hospital that was not ready.... Why did we just miss the little Calgary Stampede Parade that is done outside just for the hospital kids so we could sit here and have you tell us that we don’t have to be here!?! So we packed up and headed home for a few days.

We felt a little robbed of the joy of having a clear MRI, really that was all that should have mattered that day but it was clouded over with this frustration. It wasn’t until we were in the truck and on the road that the tension started to melt from our shoulders. Charlotte is healthy, eating well, un-side-affected, and happy and now we get to spend a few more precious summer days in our own back yard with Yolanda. We have a few more days to try and get her weight up. Her MRI is clear, there is no sign of cancer and that’s what really matters. Thank you GOD.

Saturday, July 10, 2010

Some Great News

Hi everyone, I don't really have time to post anything right now but I really wanted to share our news. July 6 Charlotte had her first MRI since she has started chemo... and it came back clear. Praise God! We truly expected nothing less but it was still so nice to have that reassurance. She also had a hearing test that came back good, she seemed to have lost some really high frequency in one ear. We were told she might not hear mosquitoes, but if that's the extent of the damage we will take it gladly. We are so happy to see everyones prayers being answered in our little girl. Thank you all.
A few picutres from Canada Day at RMcD house.