You know what they say...

When the going gets tough, the tough make cookies.
Will's Mom sent us some Halloween cookie cutters that we put to good use yesterday. Here are the kids at work--and don't worry we only made Aunty Izzy eat the results! (Thanks Lizzy!) Overall, things are going well here. The cookies looked great and tasted good too-as good as sugar cookies get, at least. We are in good spirits. I am feeling well and am excited for my MRI this afternoon. After this I will have rounded out my experiences of the main electronic imaging possibilities; now I can work more on chapter four, "Overcoming Cancer Through Claustrophobia: One Girl's Time on The Inside." That is just the working title; if you have any good suggestions, let me know. ; )

Thank you, so much, for your continued outpouring of love, prayers, and support. I must be the luckiest girl alive to have such amazing family and friends.

More Cancer

The PET scan showed that the cancer has spread once again. 4 new lymph nodes have been affected. So, in short, the interleukin-2 didn't work.

Dr. Atkins wants Aimee to get on a clinical trial for something called MDX-010, which deals with CTLA-4. From the information the doctor gave us:

MDX-010 is an antibody against CTLA-4 .... CTLA-4 is a molecule that controls a part of your immune system by shutting it down. Researchers believe that one way cancers can escape the immune system could be through this shutdown system. An antibody against CTLA-4 can stop it from turning off the immune system and allow an immune reaction to continue.

It hasn't been as effective as Interleukin-2, but shows a response rate near 15% (which apparently is on the high end for Metastatic Melanoma). She has to have the right blood type for it though. So they took her blood today and will let us know in 2 weeks if she is approved.

The treatment itself will be less intense than the Interleukin-2: outpatient rather than inpatient, and milder side effects.

There are other options other than MDX-010, but they seem to be more severe treatments. One would involve Aimee heading down to the National Cancer Institute (NCI) in Washington, DC for 2 or 3 six week periods and combining chemotherapy with immunotherapy. It seems promising from what Dr. Atkins said about it, so we want to make sure this option is still open to Aimee if she opts for the MDX-010 treatment.


The good news, however, is that Aimee is still otherwise healthy and ready to continue fighting. She says she hopes to write her own cancer booklet after all this, like a sort of Frommer's guide to Melanoma. "The medicine was served lukewarm, the ambiance was drab at best, but the service was excellent." :)

PET

I have no right to complain--my doctors have been amazing, the nurses fantastic, I have been quickly and kindly helped throughout all of this summer. But...mint peanut oil? Why is the prep for the pet scan mint peanut oil with a chaser of berry Barrium? Might I respectfully suggest strawberries followed by hot fudge sundays? I'm no scientist but I think that would be a better preparation for an hour in a tube. Just a thought.

Anyway, the pet scan was this afternoon. Results on Tuesday...

A Series of Unfortunate Events--and a pet scan delay!

My CT scan for today has been switched for a PET scan on Friday. Hopefully, this will get us around the problems of reading the contrast-less CT and will give us a more accurate idea of how everything is going. My meeting with the doctors to get the results will still be a week from tomorrow. We'll let you know what we hear.

Otherwise, things here have been a Lemony Snickety tangle of busy happenings. It got cold in the last few days...We ordered oil, put in the storm windows, took out the ac, put up our Halloween pumpkins. Our water heater broke on Friday night and leaked all over the basement, we have no hot water, or even vaguely warm water; our landlady is in Greece (so we were on clean-up, catch up, and follow up). Her daughter changed her cell phone number-- it took me all weekend to hunt her down in order to get the plumber in--the plumber visited yesterday evening and promised to return today with a brand new water heater. Our pediatrician left our insurance so we had to find a new one and do all the accompanying paperwork to transfer files, doctors, claim numbers, etc. The secretary chided me that I should have done this sooner (switched or forced out our doctor, it wasn't clear which) and now I will have to wait until they get the paperwork before I can make Tilly's belated check-up appointment. And then I got a note in the mail that one of our claims was denied and we owe $900 for the dermatologist visit in May. (That was an expensive band-aid!) And when I called today to ask about it (the bill, not the band-aid), they said; No, actually, there are three denied claims from that same day and we owe a few thousand dollars because they never got a referral, or more likely, did, but lost it--and now it is too late to send a referral as more than 3 months have passed. (I know I requested it--I remember calling them to do it). (Plus, why didn't they ask for it sooner if it was missing??!??) BUT I talked to my doctor, to the insurance customer service department, the claims department, and the appeals department and verbally appealed the denial--and I think, I hope, I straightened it out. Phew!! NOW, I'm happy.

Besides all this, we had a wonderful weekend. Donny and Michael and Jessica came over on Saturday afternoon and we went to the farm for a haunted hay ride, ate hot apple donuts, and brought home the two best little pumpkins in the patch, er...bin. On Sunday, we went to Dorothy's house for a reunion of former Marshall Street Spinsters (or at least some of the very local old Medford roommates --Sadie, Becky, Tara and the Annex girls sadly weren't there). Once, it was just us girls studying in cold garrets (or warm friend-filled kitchens, depending on the version you hear). Now there are spouses , fiances, and babies everywhere. We had-as usual-a very lovely time. Pictures to follow.

I hope you are very well and that reading this doesn't cause you to chew on a table (per the Lemony Snickets baby).
With lots of love
A

Happy, Happy, Joy, Joy

My sister Kate had her baby yesterday-a girl, 8 and a half pounds. Mom and baby are doing great. We hear that she will be named Lily Gabriel and that she is gorgeous and looks a lot like her big sister. We couldn't be happier; as Browning put it, "God is in His heaven and all is right with the world."

Stone Zoo Murl!

When I was pregnant with Xavier, we used to drive past the zoo on the way to my doctor's appointments and point it out to the baby, yelling "Stone Zoo, Murl!!!" (Murl is what we called him then--before he was so clearly a Xavier). Well, after only a slight several year delay, we finally made it INTO the zoo--and had a great time.