Still, we are going in for an MRI tomorrow morning to get a closer look. If you could hold my little (big?!!!) girl in your thoughts and prayers tomorrow, I would really appreciate it. Its probably nothing. In my heart of hearts I feel it is nothing, but her Li Fraumeni means we have to take everything seriously.
Baby Eleanor has adrenal cortical carcinoma. She is 1 in 10 million. This is our journey.
Wednesday, 22 October 2014
Hiccups
I've been delaying writing for so long because of nothing. Because of something. Somethings. Because it was easier for me to stay silent. I haven't been well and I am slowly bringing myself back. Back to health. Back to the light. Back to life. It was a long spring and a hard summer but I'm feeling much better. I want to write about my experience in depth, and I will at a later date, but for now we have had a little hiccup. A tiny hiccup that is probably nothing, but until all avenues have been explored, it's still scary. Eleanor had a routine ultrasound last week and something showed up on her liver. She's never had any issues with her liver, which I am so grateful for. It seems that once adrenal cancer hits your liver, the likelihood of living cancer free greatly diminishes. She had blood drawn and her tumour markers were nonexistent for adrenal cancer and any new liver cancer, so we are hugely relieved, and this DOES NOT look like a sick kid:
Sunday, 1 June 2014
Friday, 18 April 2014
Good(ies) Friday!
It has been far too long, I know. Our computer died its dying breath recently and I'm back to typing on my phone, which I don't love. A lot has gone on in the past two months - mostly good (we bought a house!) some not so good (2 stomach bugs = 2 emergency shots in her leg) - but today I just wanted to upload some photos from our Easter egg hunt! We have watched this community event from the sidelines for the past two years and were really excited to take part this year. I wasn't sure if she would get the concept, so I did a practice run last week. It was completely unnecessary and created a little tension in the house! Everyday since she has put on her egg hunting hat and asked for Easter eggs. Whoops. So she was REALLY ready for today. And the girls looked really great.
Girlfriend never fails to amaze me. I thought she would hate having her face painted. She loved it! Here she is getting a flower painted on one cheek.
I'm going to dig out my little net book from our "stuff that came home from the hospital" box and try and write more updates. I miss writing and I have a little time. Not much, but a little. Don't hold me to it; it seems every time I embark on a new project, Eleanor gets sick or Penny goes through a "wonder week". They sure do keep me busy, those girls!
Friday, 14 February 2014
Sweet, Comic Valentine
Your looks are laughable
Unphotographable
It's been awhile so here's a quick breakdown of what's been happening:
Potty training? Check
Big girl bed (mattress on the floor)? Check
Preschool enrollment? Check
Long term follow-up (appointments every 3 months vs 4 weeks)? Check
Speech and language catching up? Check
Happy Valentines Day!
Thursday, 26 December 2013
Rowdy Rowdy Eleanor Goudie
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| Bossing her beloved Jack |
***
I've spent a good deal of time over the holidays thinking about the ghosts of Christmases past. We have had four with Eleanor, FOUR. That feels like so many for such a tiny girl. The first she was only two weeks old, and I spent most of it lying on the hide-a-bed in the tv/playroom at my parents house, watching episode after episode of Mad Men and nursing Eleanor. It was pretty awesome. The second was awful. We were discharged from Children's with the intent of having a quiet Christmas and instead ended up in the PICU at Vic General and watched a young man die. We got out just in time to celebrate, but ended up back in the hospital on Christmas Eve when she pulled her NG tube out. Last year everything was good, but we had no family around, so it felt a little lonely. This is the first Christmas she has been healthy and I guess I got a little carried away with how much she could handle. It doesn't help that this holiday season came right on the tail end of a very busy month of hospital visits.
Anyway, here are some of the lovely photos of our very special Christmas - our first with Penelope!
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| Who eats, and eats, and eats... |
The carousel at Butchart Gardens
The Festival of Trees at the Empress
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| Gingerbread! |
Playing til the breaka breaka dawn at our old friend's Christmas Eve party (well, til 9:30 but it might as well have been the break of dawn)
Oh, speaking of... this was the sunrise on Christmas morning. You can almost hear the angels singing :-)
| These dolls will be the death of me... |
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