September 12, 2008 (Friday)

Gracie at 7:25:16

Gracie at 7:26:05

Gracie at 7:25:09

Gracie at 7:29:43

Tonight we went out to eat to celebrate being done the first round of chemotherapy (courtesy of Grandma- thank you very much Grandma). It was nice to have Gracie back for her first full day at home. She was running around and playing like always. I took a few pictures at the restaurant and have posted four of them with the times taken. Picture #3 is the first time that we have caught leucokoria (a white reflex rather than red reflex in the eye) on camera. If you click on the pictures you should open a page with the pictures much bigger and it will be evident in the right eye. I posted the other pictures to show that a) she is adorable and b) usually her eyes look completely fine. The picture four seconds before shows her bright eyes and the pictures 53 seconds prior shows excellent red reflexes in both eyes. The completely white eye is only seen with flash photography. When we can see it without a flash it is more like a hazy white substance that floats across the pupil. So with Gracie only after the diagnosis of retinoblastoma and hundreds of pictures have we been able to capture this common indicator of retinoblastoma. I thought some of you would be interested to see it.

Anyway, as I mentioned Gracie has been her normal self. She loves to jump and play all day! The only indications that she was undergoing cancer treatments is the seemingly constant fight for prescription coverage, giving Gracie a shot in the morning, giving antibiotics and laxatives during the day and finally the episode of nausea and vomiting just before supper. She had been feeling fine all day and was jumping around playing with her sisters when suddenly she wanted to sit and rest. After she was was given anti-nausea medication (zofran) and was really cuddly for half an hour before returning to her bouncy self. She did not eat much supper but loved her chocolate milk and playing with me all throughout supper.

It is sad to see her sick but good to see that she is coping reasonably well. We continue to be amazed at and grateful for the support that has been shown for Gracie and us (her family) on a daily basis. It brings such comfort even when things are difficult. People have given of themselves in so many ways; from generously giving of their time and means, to offering cards or e-mails or notes of comfort, to just being there to listen and understand that life sometimes is just not easy. So thank you all for all that you do and the many ways you serve and bless us.

Stephanie's note - Zofran is the medication that we're currently fighting with insurance about. Someone noted in the last couple of days that we never seem mad or upset in these postings, perhaps that's because we have constant target for aiming our anger at AKA our insurance company. Zofran is extremely effective at controlling her nausea and without it she'd be very sick, but insurance figures it's not medically necessary. Obviously whoever made that call didn't have a three year old receiving chemotherapy. The way I'm feeling right now I don't think they even have a soul. So yes, we do get angry and upset but we have someone very concrete that we can direct all that anger at, all the idiots working for our insurance company (James says I can't name the specific company - he's far too nice). I guess this means my neighbour's trees are safe.