Wednesday, September 22, 2010

September 15th Wednesday: Discharged (to RMcD House for now)

I don’t feel like this past round went particularly smooth, we had a couple of bumps that could have been avoided. Charlottes stem cells have been given to her around 2:00 the past two times, so when the nurse came in with her pre-meds at 9:00 am we were surprised at how early we were getting started. (Usually we give her Benadryl and steroids at about 1:00 to help her through the transfusion.) When Rob asked our nurse she told us sometimes they do them at 10:00 and that Charlotte was in the computer for the drugs now. A comment that our nurse had made the night before then made sense, she said to get a good sleep because it would be a busy morning- at the time we thought that we would not really have a busy morning but maybe she just meant our usual busyness. Ok dokey, it added up so we gave her the pre-meds. About an hour later our nurse came in looking sheepish and said that her stem cells were not arriving until 2:00-it was in the computer wrong and no one had noticed. So Charlotte had her usual 4 hour Benadryl nap... while the doctors came in and debated about what to do. Both the Benadryl and the Steroid had a 4 to 6 hour effect; Charlotte actually would need them at hour 5. So we debated if she would be protected enough, what about the side effects if her dose was repeated early? In the end we only gave her the Benadryl again... so she slept most of the day... and not much during the night.

It was Robs turn to sleep at the hospital that night, we had worked that out in the beginning since the smell of the stem cells makes me nauseous and that would be the worst smelling night. We knew that daddy was in for rough night... but we had no idea. She actually slept not too badly until about 1am when Rob woke up to her making a funny sound. Luckily he got up checked on her. She was soaked in blood, her blanket and crib pad were all soaked. One of her lines had somehow come undone. I came in the morning to find a very pale Charlotte sitting with her very shaky, nauseous Daddy. She had lost a lot of blood; Rob had to wring it out of her clothes. Our big concern was if she would have lost the stem cells that had been transfused earlier. So our nurses were consulting the doctors who where consulting the stem cell team.... we had a lot of people in to take a look at her reassure us that her cells should have all been absorbed by that point. We all felt a little shaky that whole day but by bed time Charlotte had a couple of meals in and was looking much better.

I’m not sure if I have mentioned this before but her stem cells are needed for her body to recover itself from the chemo drugs. No one has actually told us what would happen in Charlotte’s case if she were not to get her stem cells back, but we have the impression that it would take many months for her to recover herself... and some kids would not recover. Hence our stress over Charlotte loosing so much blood that night! By the end of the week her blood counts were back up to where they were expected to be so she was back on track.

Potentially our last hospital stay... Walking down the corridor on our way out after Charlottes discharge made me confront some mixed up thoughts and emotions. Excitement. Relief. That could possibly be the last time we sleep there! Nervousness. Anticipation. But really the worst of this round is yet to come; her dragony days are still ahead of us. Anxiety. Charlotte could still very easily get sick or have a fever, granting us another stay. Fear. This is also the last round so it will likely hit her the hardest, although she has come through the rounds relatively unscathed... trying not to get our hopes up! Hope. How can I not let my hopes “get up?” Confusion. Can I let myself look forward to something even though it might not be there when we expect it? Is that just asking for disappointment? Only time will tell if her cancer was cured, but maybe-hopefully this protocol is all we will ever need to go through. Guilt. So many new friends that we were leaving behind us, all still in the midst of cancer and chemo drugs, it’s just not fair. Nothing about that is fair. Pride. My little girl has shown such strength though everything that we have put her through. Appreciation. Our friends and families have held us up, shown so much love and blessed us in so many ways.

Charlotte helping out with checking her blood pressure.

Some of our favourite nurses, we were so happy that they all ended up working on our last day.

One of Charlottes new friends, we will get to play with her at RMcD house too.

A quick nap before we head over to RMcD House.

All we can really count on is the stuff that’s already behind us I guess. She has finished this last set of drugs. And that is exciting. But what will the near future hold? I guess we are still forced to take this journey one day at a time.

No Kisses!

Just goofing around with her daddy. To get Charlotte to give kisses we have to play a little reverse psychology... "Noooo, no kisses, no kisses, dont even think about it!" and then "Ewww kisses!" Here are a couple of cute picutres of her going in for some kisses. You can almost see the twinkle in her eye.
Little cardboard puke trays... if you are not busy throwing up in them they are great for holding crayons, or good for hats, or shoes in a pinch too!

September 11th Saturday: Last day of drugs

Here we are starting her last round of drugs for this protocol. Yahoo! So we are still doing the baths every six hours around the clock for another day... but then we will be done with that too!

Things are finishing up; we are seeing an end in sight. It’s hard not knowing when the end actually is.... will we ever feel like it’s over? We do not have a definite single day or event that we are working towards, it’s hard to not have a goal. The drugs are done though.

The next little while will hopefully go as smoothly as the last rounds did. We will wait for her to recover from the chemo, once this “round” is over we will go back for an MRI and if that shows nothing they will schedule a surgery for her central line removal. That could take a day or a month to get her in judging by the mixed messages we have heard. Once her line is out that will be a big relief that that part of our journey is over. We will be able to play without caution and concern, baths will not be such a procedure, and swimming will be an option.

MMmmm, warm blankets to dry off with... It will be hard to go back to plain ol' towels!

Monday, September 20, 2010

Sept 9th Time at Home and Starting Round 6

Well our time at home went way too fast. I spent most of the time unpacking, and by the time everything was finally unpacked it was time to start packing to head back up to Calgary. All those 12 Rubbermaid tubs that we hurriedly packed up got stuffed into the laundry room so it was out of sight. That left a very cramped spot to try and sort things out. It was going ok until I went to do some laundry and found the dryer was broken. Then we had to unload all the tubs into the bathroom to get out the dryer to take it to see about a repair. Alas a 15-20 year old dryer is not worth fixing up... so we went on the hunt for a new dryer. Just what we wanted to do on our visit home! Oh well we found a deal on a second hand set that was only a year old so hopefully there will be no problems with them anytime soon! Then I had to rip my laundry room right apart to get the new unit in. Sigh, next time we are home though the laundry is going to almost wash itself!

The weather was not particularly nice so that made it a bit easier on us since Charlotte could not be in sunlight. We took her and Yolanda out to see Great Grandma Slee. We all enjoyed lunch and a “tea party” as Yolanda calls it, at my Aunt and Uncles, in honour of Grandmas 91st birthday. I was disappointed that I had forgotten to take my camera along.

We were back up to Calgary on the 9th. Charlotte had an audiology test in the morning, which showed slightly more loss in the high range hearing. We are still in a good range we were told and she is still a ways off from needing a hearing aid. Things are looking hopeful that she might win that battle. After that we had blood counts taken in Clinic. Her counts were just borderline ready to start the next round of chemo, so she was admitted to get things started. A night of prehydration... to get her little system flowing so that the drugs are flushed out as fast as possible. As if that makes any sense.
Two days of drugs... and the 6 hour baths started again too. The drugs went in fairly uneventfully so that was good.

August 27th Clinic... and Sent Home!

This was a very busy day! We had a clinic check up in the morning, we were expecting that Charlotte would need blood. What we were not expecting was that once her transfusion was done we would be sent home (like home, home!) That’s what we say because RMcD is where we go when “they” send us “home.” But when they said home with a pause we said “like home home!?” Blink blink blink. Yes like home home. Yahooeee.... oh wait that had some major implications. This would be the longest stay at home that we have had in the last 6 months, we would have to (for the first time) pack up and clean out our RMcD house room. Ugh. Plus Yolanda is staying with us here, so we have her “helping” pack. Charlotte ended up needing blood and platelets so that tied Rob up at the hospital until 3 or so.
Rather than organizing that night and clearing out the next morning; my husband, the patient fellow that he is wanted us packed up, cleaned out and on the road by that evening. So Yolanda and I ran out to pick up some Rubbermaid tubs to put our stuff in... We have definitely accumulated a lot of stuff here! We packed and packed and packed... once Rob and Charlotte were out of the hospital we sent them out to pick up another couple of tubs so we could pack some more. We cleaned our room and were on the road by 6:30... no longer talking to each other. Our truck was loaded, 12 tubs and 2 suitcases in the back plus the cab was stuffed so much that I held a pile of stuff on my lap all the way home. A quick stop at the drive thru for supper helped boost everyone’s spirits- probably mostly mine as I had not eaten since breakfast. The ride home was good once the girls fell asleep and we were home around 10:30. Rob has since promised that we will not have to do that again. But all in all we got to be home for almost two weeks!

August 19th Build a Bear

We were discharged just in time to join everyone at RMcD house for a trip to Build a Bear. What a fun morning out that was. The Kinsmen hosted a fun trip out for all the kids (and their parents.) Build a Bear opened their doors early before the mall opened so the store could be clean and free of germs for our immunosuppressed kids. That meant an early start! RMcD arranged for two limos to come and pick us up, Tim Horton’s doughnuts were waiting inside for the kids... and plenty of coffee for the parents. Yolanda was so excited that there were no car seats and seatbelts, plus there was a purple doughnut in the box! Oh La la!

Once we got there both girls were a little overwhelmed at first but quickly got the idea with the help of some friends from RMcD. Yolanda picked a frog and Charlotte picked out a pink bear to stuff with fluff. Then they got to pick out clothes to dress their dolls all up.

After that it was back to the limo with our new firends and out for an early lunch to Joeys Only for fish and chips. Thank you to the Kinsmen and RMcD House for the fun day!

Monday, September 13, 2010

Aug 13th: Round 5

We were admitted at 8:00pm Thursday for pre hydration so she would be ready for the chemo on Friday. We put our heads down, dig in our heels and brace ourselves for round 5. Things went fairly smoothly as far as chemo goes. I could basically just copy and paste Julys experience... I think fatigue for all of us is setting in a bit more now. She got a little “dragony” but not as badly as last time.
I will have to go back though by day timer and see if I can pull out a few more details than that.

Here is a picture of her bedtime meds one night, once we were back at RMcD house.
I have also updated our prayer request list a little, mostly we are still plugging away with the same things.

Aug 7th: Home for a rest

I’m hoping to get away with the old “a picture is worth a thousand words” bit. I have lots to share but no time to share it right now, I’m closing in on midnight now and I have not caught up with half of what I was hoping to.

Helping water the trees, "Some for you, some for me, some for you..."
I hope our doctor does not see these ones.... we have orders about not letting her out in the sun, the drugs she is on could make her skin break down in the sun, plus she is not supposed to have her "line" get wet, and Im pretty sure it was soaked in about two seconds. But it was so nice out while we were home and we had not been out all summer. Sigh.
Dont worry Dr. Lucy, she was only out this once and it was only really for like half an hour tops. Our time home really looked more like the picutres below...
Actually they look too sweet in that one... they looked more like the one below here! With all the snorkle and drool on the screen.

July 28th: Fun at RMcD House

Back to July 28th: Yolanda is up just after Charlotte’s birthday
Charlotte has gotten a couple of donations from young kids (with heart warming stories to go with them) so we wanted to buy something that would be totally fun and that we could share with all the kids at RMcD house. A bubble maker was just what we needed!

....I hoping that one day I will have time to go come back and add in what those stories were but for now I will leave it at that.....

We had a couple of really nice evenings with lots of little ones around to play with. I think everyone had fun.
Here are Charlotte and Kaydee checking things out.
I think Chloe had the most fun popping the bubbles out of everyone... she stayed so focused!
Reese and Yolanda are investigating why the bubbles were slowing down... need more soap mom! 
Adorable Chloe!
I really wanted to take a "Birthday" picture for Charlotte’s album; I am trying to get one with sisters together each year. This year was a little different since we never really had a big party; everything was spread out over the week. So the day we got to go into the MAGIC room I tried to get them ready for picture taking....
I’m not sure if I should be posting pictures of inside the magic room, I would hate to spoil it for any other kids (or parents) who have not been in yet. BUT it’s just so cool that I can’t help it, I will just post two for now.
This is in through the first door. The most amazing murals in here!
Then the throne is in the second little room, princess Charlotte didnt really want to sit around a pose and princess Yolanda would not cooperate at all. So much for my sister picutres! Oh well, later on that afternoon I snapped this cute one of them on the couch downstairs