Date: Tue, 04 Mar 2008 16:54:37 -0500
Subject: TOMORROW!

Hello Everyone,

It's been a while since we've sent an update and thought it was time as we have a special request today. I'm going to start with a brief summary from January up through today.

In January, as you know, Brittny was taken off the Revlimid protocol from NIH as it was no longer working. The prognosis was bad, but being the strong-willed, determined, and "argumentative" (well, okay, only myself as far as argumentative) family we are, giving up was once again not an option! Steve and I did a lot of research, compared her past treatments that had failed with new treatment options, and finally agreed the Duke protocol best fit Brittny (also taking into account side effects, toxicity, etc.). After speaking with Dr. Moscow (her oncologist here at UK) and Dr. Warren (the oncology pediatric brain specialist at NIH), this procotol was agreed upon by all.

This protocol consists of two chemotherapies: Avastin and irinotecan. These chemos are given every two weeks through her port-a-cath and take six hours to administer. This is an all day event. Brittny and I pack our pillows and blankets and head off to the clinic every other Wednesday. They draw her blood to make sure her counts are high enough to receive the chemo, she is seen by Dr. Moscow, thoroughly checked out from head to toe, and then receives her Zofran (a medication for nausea). Once we get settled into an infusion room, I head off to Starbucks, which is only one floor below us, to get our usual latte and hot chocolate. Now, I must say this is not your usual clinic setting. This room has a TV with DVD, PlayStation 2, movies, games, sofa, two reclining chairs, just about everything you would need to make what could be a terrible situation a really quite comfortable one (better than some hotels I might add). Steve, being the wonderful and loving Dad and Husband that he is, always brings us lunch, sits and visits for a while, and then returns to work. Usually within an hour or two, the infusion is done, we go home, have dinner, and then go to bed quite early because we are both exhausted from the entire day! Brittny has tolerated these treatments EXTREMELY well! The major side effect has been hair loss, which upsets her because she is 14 and appearances are so important at this age, but as always, her strength AMAZES us!!! She continues to hold her head up high and say "I'm still here and that's all that matters!"

Since April when Brittny was first diagnosed with this horrible brain tumor, she has been on and off the steroid dexamethasone (decadron). As most of you know, steroids cause people to overeat, retain fluids, and obviously gain weight. Brittny has gained quite a bit of weight since November when she was put on 4 mg a day and still remains taking that dose. She has been VERY depressed and wants to come off the steroid, but because of so much swelling in her brain, this has not been able to happen.

Now to our special request. (I know you all wish we could always just get straight to the point, but as you probably have figured out from all previous e-mails, the likelihood of that are a million to one.) Brittny has an MRI of her brain tomorrow morning @ 10 at UK. Dr. Moscow has said that we can start to wean her off the steroid if her MRI shows improvement or stabiliization and no added swelling. He really would like to start weaning her off as well because he knows she is beginning to get deconditioned from the weight gain, is having a harder time getting around, and is staying depressed. Please, please, please say an extra special prayer for Brittny tonight before you turn in or tomorrow morning around 10 if you think of it. WE KNOW THAT PRAYERS WORK! Please pray that her MRI is good, shows improvement or stabilization, and that there is no added swelling!!! As I told someone today, we need extra super-heavy duty prayers . . . don't know if there is a difference, but what the heck, give it a try!

Thanks so much for your time (especially reading this), friendship, and love,

The Williams Family