October 29th Friday: Hope... and a silly story

Just two days after surgery and Charlotte was doing so amazing that our doctors almost discharged us today! There was just one small thing they wanted to keep an eye on for one more night. So she should be out in the morning. The prayer of our heart was not answered in the way (or time) that we had hoped for but she is doing great and we have gotten some positive news.
Right after surgery we were told that her tumour looked different and we have seen that go either way with other friends here. So that really left us up in the air. Something that scared us was that there was a fluid with the tumour that her neurosurgeon said looked suspicious. If that fluid came back with cancer cells in it that would have brought full cranial and spinal radiation back to the table. Although we don’t have our final in-concrete results from pathology we have heard that there was nothing cancerous in that. They also said that the tumour looks like it is formed of “mature” cells, meaning not as aggressive or metastasized cancer cells. It appears to be something more benign, possibly meaning it would need no radiation at all! No matter what the final results from pathology are we will still not be finished, but if it is benign we would have a much easier road ahead. An oral chemo that could be taken at home with monthly checkups was what her oncologist mentioned. BUT we are trying to stay open with this until we hear back their final results because there are too many variables. I just wanted to share this glimmer of hope with everyone who has been praying for us and sending us encouragements.

I would like to share a little laugh that we have had. I’m not sure if the fact that we can find this humorous (despite the details) is an indication of how accustomed we are to hospital stuff or just how crazy and tired we are.

The first time Charlotte came out of surgery her head was stitched up beautifully. I remember a few nurses commenting on it, and it seemed that for such a huge scar everyone thought it was really nicely done. We had nothing to compare this to and just assumed they say that to every parent to make us feel good. The stitches were evenly spaced and all the same size, I guess the bar was set high.

Scene 1: Charlottes bandage fell off early in ICU we got a peek at her stitches... they were not bad but just not as pretty. Rob asked the doctor that came in to check on her bandages who the heck did the stitch job this time (with a negative inflection.) The doctor peeking at her bandage pursed his lips and asked why... and so Rob told him that it just wasn’t as nice as last time. Well -of course- we were talking to the doctor that had put them in! Then he got a little defensive and explained that since they went over the original incision her had to work with the scar tissues. So there was some back peddling and awkward moments until the doctor left the room. Scene ends.

Scene 2: That afternoon while talking to the other doctors they good naturedly offered to bring in their practice board for Rob to try out for himself. We thought that would be fun for a laugh... and so went the banter for the afternoon. We really didn’t think the job was bad.

Scene 3: That evening her incision was still leaking a fair bit; the nurses during the day said it was fairly normal and likely just fluid from the swelling. (Although I don’t think any of them actually saw it at its worst.) If she was crying or laying down a constant trickle came out... but if she was screaming it actually spurted out. If she was sitting upright and happy then nothing showed up. Just as one of our night nurses came in she saw it at a bad time and alerted the doctors right away. The amount was too much to be normal and she was pretty sure that it was actual CSF (brain) fluid. After we cleaned her up and took a close look it was clear that it was coming from one little area near the top. They were going to bring in a doctor right away to add a couple of stitches just to help close it up.

Scene 4: And guess who walked through the door... Oh man, now he was really going to think we didn’t like him. Luckily Rob was off to the hockey game by this point and could not stick his foot in his mouth. So the doctor gave her a local anaesthetic (oww-needle in her head) and the nurse and I wrapped her up tight and pinned her down while he reinforced a few stitches. She hated being pinned down and squirmed like a leviathan. I thought I did pretty well... although I didn’t really watch too closely as he pulled the thread though her skin. Somehow it was not the little needle going through that I didn’t like it was the thread pulling that sent a shiver up my spine. If we thought it was not as pretty before it is definitely was not pretty now! Two different colours of thread used and the new stitches are smaller and closer together. BUT her head does not spurt CSF anymore so that all that really matters! I know, our daughter goes through brain surgery and we nit-pick the stitch job; really, our priorities are not that messed up- it was all in fun. I wonder if our doctor took the practice board home?

Scene 5: My mom cut out a joke from the newspaper. A guy standing over a cut open pumpkin saying something like “Relax, I’m just messing with your head.” So we give that to our doctors. They took it expecting some typical sentimental card.

Scene 6: Charlottes (primary) neurosurgeon came by after and thought she looked good enough to be discharged. Then he caught himself and told us to stay one more night, “what if she needed her head stitched up again?” he asked “I’m not sure if the doctors in Cranbrook who would be really comfortable with that job,” he explained. I said “Oh, I watched last night, I’m sure I could do it if I had to.” I’m not too sure what he thinks of us now, first Rob says his partners stitching job wasn’t good enough and then I said it didn’t look to hard and that I could do it.

We will see how it unfolds tomorrow...