Tuesday, August 3, 2010
We have been keeping it pretty low-key around here. Cam just isn't up to doing much. We did get to have a family outing on Saturday. We went to our first HopeKids event. HopeKids orginizes activities for kids with cancer and other life-threatening medical conditions. This time it was roller skating at Classic. It was a blast, and SO nice to talk with other parents going through the same crap!
One of the reasons I really wanted to go is to meet Millie and her family. Millie is the cutest little 4 year old who was diagnosed with ALL about 7 months ago. Her Mom has been keeping an awesome blog and documenting her progress. This blog has SAVED me! I have been able to get an idea of what to expect through this whole thing. I bet I have read through her entire blog 3+ times. Millie's Mom, Amanda is amazing and such an inspiration to me. I have emailed her questions and she has let me vent to her multiple times! The minute I saw her at the skating rink I just hugged her and got teary. I know she really knows what we are going through.
Im sad this is the only pic I got with Amanda.
Cami is still taking those darn steroids so she wasn't herself, I wasn't sure she even had that much fun, until she asked me if we could go back to the "skating place" again. Even though she doesn't act like herself or smile much, I know she enjoyed getting out of the house.
Caden LOVED it too..
Cami was so happy to meet Millie (we have been showing her pictures online).
They showed each other their ports and were instant buds.
Millie just finished the first intense 7 months of Chemo,
now she's in maintenance and her hair is starting to grow back... she is just too cute!
Other than our exciting HopeKids event, we have been laying low. We have been doing lots of crafts, playing with Grandma, dishing out Cam's daily pill cocktails, trying to manage leg pain, nausea, the grumpies, and manage her endless hunger.
I wanted to post this picture because this is how Cami looks most of the time.
She smiles for the camera, but most of the time we are getting the worst glares EVER!!
It has taken me awhile to get all the drugs organized, but I think Im getting the hang of it now. It was difficult going from 1 vitamin a day to up 8 different drugs a day. Some of the meds are twice a day, others are every 4 and 6 hours, and one she just gets Mondays and Tuesdays! Its quite the schedule and a lot to keep track of to say the least!
This is what her "cocktail" looks like most mornings and nights...
steroids, anti-nausea, anti -acid, antibiotic, and pain meds.
We are counting down the days until we get to stop these steroids. I know we have a new set of challenges ahead, but it is just so hard to stay clam and level-headed when your daughter is screaming at the top of her lungs to "GET ME SOME FOOD NOW!" or "DONT LAUGH AT ME, YOU CHEESE HEAD" ( I mean honestly, how can you not laugh when someone calls you a cheese head...really?). I get through it by taking a lot of deep breaths each day, I've been known to hide in my garage from time to time, and Lenna is keeping me well stocked in cookies so that helps :) We are trying to take it one day at a time. Actually today has been more like one hour at a time, but we are getting through it.
Friday cant come soon enough!