May 2015 Update

"Punish the Pain"- Carrie Ivy

Carrie in Ocean Shores, kicking ass.

Time keeps marching on and Team Carrie continue battling one piece of bad news after another. She had the gamma knife treatment in March and additional radiation on her spine. She had an ommaya port implanted on her head for easy administration of chemo and fluid draws for tests. She had a good  response to gamma knife; all of the lesions either reduced in size or remained stable. The disease in her spine was said to be stable after radiation. All of this has changed. 

We made another trip to the ER at UW a couple weeks ago because of immense headaches, pain in her back, and breathing difficulties about 36 hours after her bi-weekly chemo routine. She felt she was having an asthma attack, but she doesn't have asthma. We spent 8 hours in the ER and were sent home with instructions to follow-up the following Monday. They were never able to give her a reason for her breathing difficulties, but they prescribed her more pain meds, thinking that the profound back pain may have been the cause. 

On May 13th Carrie had an MRI showing approximately eight new lesions in her cerebellum. Also, one of the original brain lesions that had been reduced in size by gamma knife (the largest, most concerning one), had more cancer growing around it. The MRI also revealed that the disease in her lower spine was stable, and unfortunately there is a new spot near her T7 vertabrae that will likely be treated with focused radiation. 

The really bad news here is that the gamma knife  can't be used more than once on the same spot, so the option of zapping the larger lesion is off the table. Also, the doctor said whole-brain radiation is out because it'd be unsafe for Carrie to do have that done again so soon, since she had it in October. 

So, what is next!? Carrie had a genetic test done a while back (Foundation One) to identify any genetic mutations that may lead to treatment alternatives, and it turns out she does have a mutation that in some individual cases has been treated with Vorinastat. So she started taking the chemo (in pill form) last night. She'll take the pills for 5 days on, and 2 days off, for four weeks. After that, she'll have another MRI and consultation with her neurological oncologist to determine if she should continue Vorinastat, or change the course of action, and maybe pair this drug with another chemo drug. 

I don't want to try to fool anyone and say we're not worried, because we are. We're very concerned that Carrie's case is so complex, and there are so many things that could go wrong with the disease advancing in her brain, that, barring any miracles (pray, wish, and plead for miracles), she could very well succumb to this terrible fucking disease. 

Carrie has ongoing difficulties with her speech, and she is growing increasingly agitated by this. We're getting pretty good at filling in the blanks for her as she talks, but for those of you that know Carrie, she'd much rather be able to do it herself. Again, these symptoms ebb and flow, but it doesn't seem to be getting better, though steroids (dexamethsone). She is also experiencing numbness in her face, mostly around her eyes and mouth, on her left side. 

Through all of this, Carrie continues to get a lot done. When she's not resting, she is up doing one project or another. Cancer did not steal Carrie's drive to be productive, that is for sure.

On a personal note, we want to thank EVERYONE for their thoughts, prayers, and positive vibes. We love each and every one of you. Over the past 2 years I have been a bit out of touch with my old, close friends; please know that I think of you all every day and I will connect with you again. I miss you all and hope to spend some sunny days together soon, in fact, the thought of doing that makes me very happy. We are so lucky to have a base of such close friends and family. Please don't hesitate to text, email, or call me; I may not pick up the first time, but I will get back to you. 

I'm still trying to stay fit by cycling. I plan on riding the Seattle-to-Portland (STP) this summer, in one day.  

With the help of my wonderful co-workers and colleagues at Sylvester and other Highline SD schools, I was able to take the rest of the school year off to be with Carrie; to eat breakfast with the whole family and walk the kids to school everyday. The hours your shared with me are invaluable. I love my Sylvester Tomcat Family and look forward to working together again.

A special thanks to all that have brought meals, sent postcards, helped with yard-work, etc... None of your efforts have gone unnoticed. We all thank you from the bottom of our hearts. 

And lastly, a special, special thanks to our family. Andi and Kyle for being ready to help with the kids, seemingly whenever we ask; Paul for introducing me to cycling and just for generally being an awesome Dad. Ty and Curt for on-demand emotional support. I love you all. 

Astrid makes us all smile. 

Astrid is doing great in school. She is a strong reader, she swims like a fish, and she has been writing songs! What a great older sister. 

June- thoughtful, smart, and kind. 

June is also thriving in school. She loves music and drawing. She is strong and really, really fast. She takes after her Mama in that she always thinks about other people, and what they might like. She's makes things for other people all of the time.

West- a handful, a good snuggler, and a surprisingly good dancer. 

West is almost 2 1/2 years old. He was only 2 months old when Carrie was initially diagnosed with breast cancer. He is the sweetest little guy, ever. He has some real genuine dance moves, and loves listening to music. He is a headbanger. He is talking pretty fluently now and is almost completely potty-trained. He is a good sleeper too. He goes on screaming jags here and there, and does the occasional disgusting little boy things (we could already write a book about it), but he is such a good little guy.

Carrie, June, and West in Long Beach, WA

We love you. Thanks again for your ongoing support.