Still in NY

We are now staying in New York until Monday night. Yesterday, Dr. O prescribed a new pain killer for breakthrough pain as Adrienne was getting too much Tylenol with the Lortab. Our favorite NP, Ellen, called 11 pharmacies until she found one that carried the drug. Dr. O doesn't want to increase the dose of Oxycontin until he evaluates Adrienne's breathing on Monday as she has some shortness of breath from the pleural effusion and a new cough. In spite of it all, we were able to have some fun yesterday afternoon, seeing Julie & Julia, which we thoroughly enjoyed, even though we were sure that we were the youngest ones there. Well, Adrienne was the youngest and I was the next youngest. Yes, the crowd was full of old ladies. Still, we highly recommend it.

Curt has been keeping our spirits up with notes and photos from Moe. Here's a few that we particularly enjoyed.


"Mom & Ade, I decided to mark this bush so I could guide us home. It worked! Man 'm I hungry. I am having breakfast right now. Good luck today. Hurry home so we can go on the walk together. Ps.. I am the new 'Alpha.' My brother just wants to chase trucks. :) Moe"










"Mom & Ade, Wow! Do I feel better. I took the money Dad gave me for digging the hole for the Lantana and had a full body massage at Green Valley Spa. You gotta try it! Moe"













"Mom & Ade, Dad doesn't know how to make the bed. I had to tuck in everything! Moe"

PET Scan Done

Adrienne had her PET scan this afternoon. These scans have been excruciating since she has to lay still on her back, the most painful position, for a long time. She knows she has to get through it but she sobs the entire time. Hopefully she's done with these for awhile. It breaks my heart to see her go through this but I try to give her a little pep talk to get through it. After today's scan, we went to our favorite pet store about 2 blocks away to see the puppies and to get Moe a new collar. Curt's been sending pictures and updates from Moe each day, definitely a high point.

I don't have the reports yet but I did talk with Dr. O'Connor late this afternoon. He was very positive, which is what we love about him, and said that we're not giving up and she still has options. Obviously, we need to get treatment right away so he's going to try to get her on something either on trial or off trial to bridge her until SGN-35 is available, and he's going to try to get her something on the west coast. We're going to hang around until Monday and fly back home Monday night after seeing him. He promised to have something worked out by then. If necessary, we'll go home for a week and then fly back.

I won't lie...this has been tough but Adrienne is ready to fight yet again. She doesn't start classes for another 10 days so we have until then to work things out. She'll take the semester off if needed. Her birthday is on Tuesday, August 18 and Daniel's is on Wednesday (yep, they're a year and a day apart). We're planning to go to Santa Barbara on Wednesday morning (with the dogs, of course) so we can see Daniel for his 21st birthday (congratulations!!!!).

The biggest issue is to keep this pain under control so that's tomorrow's goal. Right now, she wakes up during the night, sometimes sobbing, until we can get the pain meds into her. I asked about the pleural effusion; it doesn't cause pain but it is causing her some shortness of breath. Draining it will be an issue because it's separated into pieces and hard to get to so there's no solution there yet. I'll post when I know more.

New York Update

We landed on Sunday night to discover that Eric McLeod Brule (http://kathmm.blogspot.com/) passed away unexpectedly earlier in the day. His mom, Kathy, and I have shared a lot together with our kids who were the same age. Both Eric and Kathy always had such a great, uplifting view on life and their difficult situation, and helping other people whenever they could. Our hearts go out to Eric and his family.

We had quite a meet-up at Dr. O's office on Monday morning. Bekah (http://truebeautyneverhurries.blogspot.com) was there as well as Kara (http://karalees.blogspot.com/) and both got great reports. Bekah is going to be able to take a chemo break and KARA IS IN REMISSION. How great is that after her docs at Vanderbilt told her to go home and get her affairs in order? Wow! Afterwards, we went downtown to Adrienne's favorite pizza restaurant...called Adrienne's.

We discussed options for Adrienne but decided to get an MRI to get to the source of her pain. She had the MRI yesterday and we got the report this afternoon, which was not good at all. Considering what's going on in her little body, it's amazing that she looks so good and has been able to walk all over the city. I don't have all the details except that there's a large pleural effusion that takes up 1/3 of the space of the left lung as well as new disease throughout her spine. Adrienne has been a bit short of breath, which we thought was caused by the pain meds, but the effusion explains it. The plan is to get a PET scan in the morning and hopefully get the effusion drained tomorrow or Friday. Bad news: the SGN-35 allo trial will not be available until January. I'll post again as soon as I know more.

Not Herpes Zoster

Adrienne's pain hasn't improved, in fact, it's gotten worse so it isn't caused by shingles. I keep saying, who else hopes for infection but cancer patients? She got a transfusion last week and upped her oxycontin yesterday so overall she's feeling a bit better but we're still without direction. We had considered doing Doxil as some docs thought it would be safe even with her cardiomyopathy but I spoke to the doc at COH and he didn't think it was worth the risk because any adverse reaction would be catastrophic. Remember the oath: Do no harm. Okay, we're convinced.

But once again we're without direction. I'm hearing conflicting information about the SGN-35 trial and most things seem too dangerous to try. Since Adrienne has been so heavily treated, her side effects from everything are greatly magnified and she's getting less and less benefit. New biologics are the only answer. So, we're off to New York to talk with Dr. O'Connor. We'd prefer treatment at COH if they can, but otherwise we'll have to figure out how to go back and forth to New York. If anyone has spare miles on American or segments on Jet Blue, please let us know.