Monday, September 3, 2012

Go gold!

September is childhood cancer awareness month, did you know? Did you know that the gold ribbon is for childhood cancer? I see a lot of breast cancer awareness, pink ribbons everywhere, especially with October around the corner...but I have yet to see a single gold ribbon. It's disheartening as a parent to a child with cancer how little awareness there is for such a life challenging disease.

Now that it is September, it really makes my mind drift to nearly 2 years ago. I've met families that are new to this world, they are scared, uncomfortable and overwhelmed. I remember feeling like that, I understand the struggle and the heartache they feel, and every once in a while, on a day Brinley is feeling particularly rotten those memories, doubts, and fears some rushing back. It's easy to become complacent in your day to day routine, where cancer is the norm, check ups, clinic visits, spouting off prescriptions  allergies, doses, and blood counts. To be honest I don't really remember what life was like before cancer. Most kids get bruises, aches, pains, sore limbs, but if Brinley ends up with any of these typical ailments, my mind races, "does she need a CBC?" "maybe her platelets are low" what if, what if. I have no idea what it's like to brush it off to, "oh she's just being a kid" and I'm not sure for the next 5 years if that feeling will return.

With Brinley entering kindergarten, my anxieties and fears become magnified, am I too protective? Maybe I'm giving her a complex, and she will become the kid that worries all the time, It's a struggle, I'm trying to find a comfortable middle ground, but there is a voice in the back of my mind saying, "you can never protect her enough".

Speaking of Brinley and kindergarten, she's loving it, she's made great friends, and has become the social butterfly. I couldn't be happier with her school and teacher, they have really gone above and beyond to ensure Brinley is in a safe place. The first week in she caught a bad cough, and we had a croup scare, but she turned out to be ok, and managed to kick the virus all on her own!

Since we've been out of the hospital in May, Brin still isn't on her full chemo dose, they say her body can't tolerate it, every time the doctors increase her dosage, her counts plummet, and the main focus is to keep her cancer free and out of the hospital. We're managing the cancer free bit, but making sure her ANC stabilizes, and she remains fever free has been a challenge.

In other news we have 2 more lumbar punctures to go, oh boy how far we've come.

first day of school!
helping the Dr. administer anesthetic
Hopefully I can stop neglecting this poor sad blog, but truth be told, with school, sports, extra activities, at the end of the day I'm lucky if I can get out a coherent thought.

waking up
beads to date
first d-backs game!