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.


  1. Delaine5:52 PM

    Hugs to you. praying for you.

  2. Brandy Cowden11:56 PM

    Again, your strength amazes me! I wish that we were in Cranbrook to make contact with you and your princesses. I think of them often and you are all in my thoughts daily!

  3. Anonymous1:26 PM

    Thinking of you every day.

    From your friends in Regina!

  4. Anonymous12:10 PM

    Your journal entry and news has staggered me!! I have seen you in clinic on occassion in the past while but for whatever reason not chatted... My heart is breaking, filled with pain for your pain.
    Love Anne and Ty - Calgary ACH - unit 1