Links, Happenings, Updates, and Thoughts

Last Wednesday night, I got to have dinner out with some of my cancer mom friends. I love these dinners! They are always such good brainstorming/information sharing sessions, we laugh, we cry, we get out our pent up womanly "talk-your-head-off" needs :), we enjoy good food, ask questions, get a break from kids and normal duties, and most of all - we get to share company with a group of people who completely understands what we are going through. It is a rare and beautiful thing. These dinners are good therapy for me - many thanks to a great husband who stays home, so I can go!

Oftentimes we do a potluck at someone's house, but this time we changed it up and went to the Olive Garden in Downtown Salt Lake. For the second year in a row, the manager and employees surprised everyone and paid for our meals as their way of giving back a little during the holiday season. The manager, a very sweet lady, came in as dinner was winding down and told us what they were doing. She had us all in tears as she told us how inspired they were by our stories and everyone's strength and that they wanted to do just a little bit to help us out. And then she told us we had to order dessert. :) It is an incredible group of people running the downtown Olive Garden! If you are in the area and can, show your support for such a truly great group of people by eating at that location.

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Elena and Lily have had a stomach bug the last couple of days. I think we're over the hump (aka the throwing up has stopped)! The first night Lily was throwing up non-stop and we brought her to bed with us. She is a super sweet, non-wiggly bed partner when she's sick. :)

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My very talented, crafty friend, Cassidy, just opened a new Etsy shop - A Rainy Day Play. It is filled with super cute dressups for kids. Check it out! And you can enter: RAINYDAYBLOG for 15% off at checkout!

http://www.etsy.com/shop/arainydayplay

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And speaking of crafty. We all know that I am not. :) But necessity is the mother of invention. We've been trying to make a few Christmas gift dollars go a long way this year and I have actually made a surprisingly high number of the gifts this year. (Don't fall off your chair, everyone. I know, I know. It is shocking.) I found some great websites on upcycling old materials around your house and have been hard at work. Can I just say that upcycling kind of gives you an addicting high? It is pretty cool to watch something that was "old" or a "scrap" or in the donation pile turn into something new and desirable again. And the other thing that gives you an addicting high? Groupon combined with a mega-sale at a store. Oh, how I love Groupon. And sales. After the presents have been opened, I will have to post some of my creations. Because I know you'll never be able to believe it until then. :)

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Many of the Utah Chili's are having a "Give-back" night for HopeKids this week. They will give 15% of every check to HopeKids. It is THIS Wednesday, December 7th from 3-10pm. The participating locations are: American Fork, Layton, Logan, Sandy, and West Valley.

For HopeKids to get the 15%, you MUST present the following flyer with your meal. So print it off, take off the night from cooking on Wednesday, and go support a great cause!

Flyer: http://gallery.mailchimp.com/239254e49fba470604dc5ca8b/files/22372.PDF

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I think oatmeal with fresh raspberries on top may be one of my new favorite meals. Mmmm. It is funny to me though because Eric won't touch oatmeal. And even with the raspberries he thought it was gross. I'm usually the picky one (although I have gotten a lot better since marrying him) and he is the guy who will eat ANYTHING. It's something I really admire about him. Anyways, it always makes me chuckle and shake my head when there is something I like that he doesn't. It's weird.

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The Utah Reef forum (Saltwater tanks) that Eric is a member of has a "Picture of the Month" contest. Eric submitted a picture he took last month and made it to the finals! Not bad for our little camera...

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And a mini-update. There is a never dull moment around here - not even in Maintenance. Maintenance has been SO much better than the first year of treatment, so it is a wonderful break in that way. I'll take a day in Maintenance ANY day over the first part of treatment. Elena feels much better over all, usually. But it does definitely still keep us hopping and wondering and worrying and taking lots of trips to the hospital. We've been sparse on the blog lately because we've been back and forth and back and forth to the hospital so much the last few weeks. Elena's been dealing with several things, but most notably, she was diagnosed with Ketotic Hypoglycemia on Friday. It is a very long story, but the (soft of) short version is this: Elena has had chronically low counts (ANC) throughout most of treatment. We have often been delayed starting phases or had to stop chemo (not good) because of it. After some testing, once we got into maintenance and continued dealing with it, her doctors suspected that it was a preventative anti-fungal that she was on called, Septra. We switched her to option #2 and she had a very bad, dangerous reaction to it. Cross off option #2. Then we switched to option #3 (and as far as we understand - last option) -IV Pentamidine. It was a nasty little bugger of a medicine with a horrendous list of side effects, but she received two infusions and seemed to be doing alright (felt awful during administration, but nothing life threatening). Now going back in time for just a minute, Elena has been having these "episodes" every once in a while for a long while now. She wakes up in the morning crying in bed, won't get up, says she's dizzy, has a headache, fast heartrate, she's pale and super weak, etc. We have been mystified by them. They occur randomly (not just after a treatment or something). Anyways, so since the last Pentamdine infusion, she had two more episodes like that. Finally we put two and two together and realized that the symptoms sounded a lot like hypoglycemia and then we found out that Pentamidine can cause hypoglycemia. We've been working on it for about a week and a half, had a hospital admission to monitor her, and came up with nothing conclusive. Although Eric and I were still convinced. Anyways, long story short - she had another episode on Friday morning - except it was a bad one. It was very scary - we rushed up to the hospital and were there all day. After getting some labs done, talking with her docs and then going and talking with an Endocrine specialist, we came home with the Ketotic Hypoglycemia diagnosis. They don't think it was necessarily brought on by the Pentamidine, but that it existed before and may have been aggravated. She should outgrow it by the time she's eight or nine. It is nice because we have an answer and we're all on the same page. Mostly it is just something that can be managed at home with diet restrictions and new guidelines and a blood glucose monitor. But it gets problematic (as we learned this weekend) when she is vomiting and won't keep food down. Not good for a hypoglycemic. Thankfully we had the monitor and could be really on top of it. And we got a little baptism by fire. Welcome to the world of Hypoglycemia! The other problematic thing is the implications it has for her treatment. Right now, it looks like going back to the original anti-fungal, Septra, is the answer. But that would most likely mean chronically low counts again, battling hospital stays, and reduced chemo. Which worsens her prognosis a bit. So, that's what we've been up to lately. Right now her counts are high and we're grateful for all the things that allows us to do. Her next appointment is in a few weeks and we'll see what course of action we take.