Friday, July 22, 2011

***THE PINK CAR*** Still a work in progress

Haha, the first post I did on the car I titled "A work in progress" well its officially running, registered and on the road, it has been in its first show and shine... and it even won an award at the event... the award for "The best work in progress!" So without further ado... here she is....

 I am going to leave some blanks and let Rob fill you in on some of the details... I would likely get it all mixed up.

Monday, July 18, 2011

July 2011 first couple of weeks

July  2011 Playing catch up... I feel like I am so far behind I’m not sure where to start. Sorry if this reads choppy!

Before our wish trip we started getting some in home nursing care set up. Charlotte is not really considered an oncology patient anymore (since we are finished with all her active chemo and radiation treatments) so the Children’s hospital is transferring her care back to Cranbrook. It makes for much less travel for us, which is a nice change. So we have two nurses coming to see us at home, we have just set up short little visits for now so that the girls can have a chance to get comfortable with them.  Then in the future if we require more help for Charlottes care we can bring in these new friends rather than a stranger suddenly appearing. 

After we got home from our trip we decided to re-think Charlottes central line removal. She had so much fun in the spray parks but we felt so nervous every time she got wet, we didn’t want any complications with her line. After seeing how much she loved the water we decided to make life easier this summer and have it removed.  We made the call to Calgary the day that we got home and surgery was booked for July 5. Dreams of backyard kiddie pools and sprinklers were dancing in our heads.

A couple of days before surgery Charlotte woke up in a strange state at 9:30 she was fussing, and seemed really confused, and drooling. We thought of several things it could have been, the most obvious being a small seizure. The next afternoon we saw it again, someone was carrying her and she just “spaced out” for about 10 seconds, had a full body shudder and suddenly seemed really confused- looking around wondering what and where. Then there was a sudden drooling thing again. After some more phone discussions with the ACH we decided to keep on with the Calgary trip plan and spend some time with the Doctor before we did anything. So she had another little seizure like that in the truck on the way up to Calgary. They were so short that we would have missed them entirely if she didn’t get so confused and drooly afterwards.
We had a good chat with one of her Doctors... Good; I’m not sure if that’s the best word.  But we came out feeling calmer about the seizures and surer about the line removal. The whole picture still looked bleak. The seizures are caused by the pressure of the tumours, so unfortunately they are an indication that things are still growing. She was on a low dose of anti-seizure drug so her increased that and that has controlled them ever since. We were told that we could up that drug once more and then there is another drug that they could add in conjunction... this gave us a small idea that there will be things they can do over time. Time; that is such an important word but empty of meaning for us, like the doctors tell us time could mean weeks or months- they cannot tell. He thought she looked very strong, he was quite pleased with her health, but concerned about the seizures.
Surgery went well; it was a very short procedure. I think for the older kids they might not even knock them right out... but with the little ones it’s a full anaesthetic job. Since they were taking her line out they needed an IV to put the anaesthetic through, there was a line into her hand that had the same little cap that we use to cap her central  line. When she was waking up Daddy was whispering in her ear that the doctors took out her “noodles.” She was still a little groggy but understood, she rubbed her little hand up over her chest with a smile... and then noticed that THERE WAS A NOODLE COMMING OUT OF THE BACK OF HER HAND!!! The look on her face very clearly said “WHAT THE HELL!?!” It was a look that faded from just noticing, to understanding, to shock and horror, to feeling tricked, to feeling betrayed, to anger, to panic... my poor sweetie pie, she thought we had just moved her noodles, plus now they were hindering her dominant hand. There was no doubt what flashed through her head, we both jumped in and started reassuring her that they would take that out soon too. Once her panic had calmed down, we all had a good laugh with the nurse who saw (and understood) the whole thing too.
That was a very bittersweet day... can’t describe how hard that procedure was. That was the operation that should have signalled the end of treatment, no more line = no more chemo. We had booked two previous line removals, each cancelled because her tumour had come back. And now here we were taking out her line, and not for the reason that I had longed a year and a half for. We ran into quite a few unaware doctors, nurses and anaesthesiologists who stopped to chat. “How ya doing, what ya doing, line removal! Great, so she’s done treatment then?....uh....” at which point they realized by our faces that they stepped on a landmine.  I felt bad for them, I just had not figured out how to dance around that mine yet. It truly was nice to see everyone, especially all our oncology friends who where there, but each visit was pretty hard.
Now here we are back at home... the kiddie pool is filled every sunny day. It is so much fun to watch her play happily in the yard.  I am so thankful that our basement was finished with the playroom in time for summer, a nice cool place to play when the sun is too hot. We have been blessed with some wonderful visitors to play with, lots of cousins and friends coming to see us. Rob has been super busy working on the girls pink car, but more on that later!

The girls had so much fun with their new cousin Abbey, we tried to get a nice picture
of the three of them things were going well until....

Abby started to tip over and Charlotte tried to prop her back up a bit!
Fun with Aunties and Uncles!
A wonderful visit from our friend Brynn and her family.
Love these girls so much! They are so strong!
We didn't even need water in the pool for a day of fun with these cousins from Powell River!
Great Grandpa and Grandma got in on the fun too!
Three beautiful princesses! We got to enjoy an iced tea party with Chloe, a friend we made
during our Ronald McDonald House days.

Saturday, July 09, 2011

June 14th to 21st: Charlottes Make-A-Wish Trip

Here is where we stayed, the amazing Give Kids the World village...
 Here was our villa, there are 70 duplexes in the village... so 140 families at a time. It sounded like they are usually pretty full year round. Families get to stay for a week, and they have to be referred through a wish granting organization. That means 140 kids / week all year; there are that many sick kids whose wish is to go see Disney World and all the parks. Each wish kid gets a special star that they put on the ceiling in the castle... there are over 10,000. This whole place is just mind boggling. They have 1500 volunteer shifts per week! I had so many pictures from the village that I broke it down into 3 other posts... the Park of Dreams, the Enchanted Carousel and the Ice Cream Palace were all in the village too. Once a family arrives at the village everything is taken care of, all meals are free, all events are free, free ice cream all day long. Our villa had a kitchen and laundry, two bed and two bathrooms; oh ya, and a couple of cute little frogs that snuck in one night- not part of the regular GKTW package I'm sure!
 We knew this place was going to be fun but, wow were we surprised! Giant cookies and chocolate dipped strawberries. Below is a picture of the cookie truck, he just rides around delivering fresh cookies and cold lemonade to everyone.
 Here we are back at our villa with our cookies and lemonade... so fun.
 In the model train room, it took up an entire room. There were whole rows of buttons to press that activated different things- like the Ferris wheel, or a flag waving, or a fisherman, it was a kind of treasure hunt to find everything.
 Just chatting on her cell phone while getting a pedicure from... Grandpa? With a crayon? Hmmm.
Riding the little train around.
This was where we ate supper and breakfast, the Gingerbread House.
 Cute, I thought... oh wait they were both blowing bubbles and then drinking, ew. Oh see the table? Real peppermint candies shellacked into them. There we so many fun touches on everything.
Here she is writing on her star for the ceiling.
 Putting the star in the box, the star fairy collects the stars from the box and puts them up. Here is what her finished star looked like, if you are ever at the Castle if Miracles keep and eye out for this little star.
One morning the girls wore their crowns to breakfast, true princesses!
Here we are at the My Little Pony Spa, getting our nails done. The girls got little hearts painted on their cheeks too. I thought it was cool that the toy company Hasbro made a special edition Pony just for here, Twinkle Hope.
Aaaahhhh, this is the life! Such a little princess.
This is the Castle of Miracles, where the ceiling is covered with the kids stars.
 A great time was had by all!
Thank you to Make A Wish and Give Kids the World. We had an amazing family vacation, some great memories that will always be treasured.