Monday, August 27, 2012

A quick update...before starting week #4

Thank you all so much for writing me this past week and letting me know you are still there.  I really needed to hear it because every bit of support is encouraging and helps keep our spirits up.
I also wanted to give a great big (((hug))) and say thank you for everyone who has already signed up to purchase goodies, volunteer, bake and ask for donations for the upcoming Bake Sale!!  We already have over 50 people ready to fire up their ovens and I'm so excited about our fight for the cause!  It's amazing what dedication and perseverance can result in and I'm lucky to be a part of it all.


This past week, we've managed to fend off the feeding tube demons and have put some weight on our Miss G.  Adam and I have been on her like hawks making sure we take every opportunity to get food into her.  I've probably been to the store about 3 times this week to purchase high-caloric foods including butter, heavy cream, mayonnaise, Nutella, wonder bread to make PB&J's, tortilla chips, guacamole, shredded cheese, etc.   If anyone would have ever told me 6 months ago that our cabinets would have so much food in them I would have seriously laughed.  We've been adding heavy cream to her coconut milk, cream and butter to her oatmeal, slathered on the peanut butter for her sandwiches, and doused melted cheese on her tortillas.  We even started adding light olive oil to her milk and everything else possible after hearing how many calories and fat grams are in a tablespoon of the stuff.   It's twice as much as cream!  She hasn't complained about the change in taste so I'm going with it.  I even had to pull out all the stops and tell her we would go to the boardwalk this weekend if she gained a pound and to my surprise, she got pretty close.  Monday, she gained about 0.7 lbs and her GI issues have been slowly resolving without extra medication.  Thursday was her exam with the oncologists (which was actually scheduled for 4 hours after her radiation unbeknownst to us until the evening before but I won't go into that story) and a discussion about an NG tube that wasn't going to go down without a fight.  It ended up that G looked so great (and happened to be eating a bag of chips during the exam) that they concurred she didn't actually need the tube.  Thank you.  End of conversation.  I'm sure it won't be the last time it comes up but in the midst of everything going on with radiation, chemo, GI issues and more than normal nausea, this is probably the most critical time.  

Radiation seemed to be starting to wear on Gabriella.  By Wednesday evening and Thursday morning, she starts getting pretty upset that she has to go back to the hospital for her "nap" and starts to resist.  I don't blame her because I get pretty tired by this time too.  Fridays are good day because it's the day they take out her access for her port.  Then she can swim over the weekend and take a real bath.

Adam's birthday was this past week and we celebrated with some amazing friends at Crows Nest.  Exhausted as Adam was, we had a great time just getting away for a little bit.  Thanks to Grandma and Grandpa for helping with the girls and helping with Bridget so I could take G to radiation!  Friday was his actual birthday so after radiation, G wanted to pick up some cupcakes at the grocery store.  So we picked up cupcakes, cookies and fruity pebbles (anything she thinks she will eat I'm buying these days) and took them to the firehouse.  I think she took one lick of frosting and that was it.  Hopefully they were enjoyed by the guys at Station 5!

Saturday, as promised, we planned a quick trip to the boardwalk.  I was so consumed with Gabriella's eating and gaining weight that I forgot it was her weekend where her immunity was going to drop.  Crap.  Already promised her a boardwalk trip because she ate so well.  We went anyway armed with our sanitizer spray, hand wipes and gel to fend off any bugs.  I think I sprayed her hands every time she touched anything.  People must have thought I was a little nuts but it's funny how you stop watching for reactions and caring what people must be thinking of you when you're in the midst of a battle.  Yes, my child is bald, yes I'm killing every germ in our path, yes I will completely avoid you if you cough or sneeze and yes, she has cancer and we are kicking it in the ass!  It was crowded so Adam and I were extra vigilant.  We actually had an amazing time and ran into cousin Iskandria and my sister's boyfriend, Andy!  They were able to ride the carousel together and the girls loved it!

Sunday, I actually got to sneak out for a massage (and another trip to the grocery store) thanks to our dear friend Heidi Bruce!  The girls just love her and have a great time when she's there painting, coloring and partaking in whatever fun craft Heidi brings over.  The massage was awesome and that was thanks to my wonderful friends, Eowyn, Kiki, Katherine, and a "friend from Sutter".  I truly needed this time to re-energize and it was wonderful.  

On to the next week...week #4.  Ready to get this done!

Kristin
Night out at the Crow's Nest!  Happy Birthday my love!

Enjoying their cotton candy...the main reason we go to the boardwalk!

The cotton candy slayer

On the carousel with Andy and Iskandria..a pleasant surprise!

My beautiful little baby Bridget

The morning bathroom line-up
Happily painting their faces





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