Midway through my vacation in Arizona I was hit with bad news that my little sister has cancer. This sent me into a downward spiral as I tried to grasp what was going on. Below you’ll see the letter that we sent out to our friends about the cancer and how Kelly is doing.
I’m home now, but feel very behind in the grieving process and very much alone. It’s funny everyone I’ve ever met is reaching out to me and my family and yet I still feel alone. I’m going back to school today for the first time and hopefully that will distract me a bit.
The good news is Kelly is in no immediate danger and we have lots of time to make the right choice.
Thank you to everyone who has called, texted, emailed, facebook’d, tweeted and sent virtual love, support and prayers.
I would like to especially thank Julia and Alec for being great stand-in parents when I received the devastating news so far from home. I really appreciate it.
Email to our friends:
We received some very difficult news this past week and now that we have a little more information, I wanted you to be aware of what’s happening. First, let me tell you that the Benson family is doing okay and that we are taking a breath and putting together a plan.
Kelly, who is 23, was diagnosed last week with a rare form of cancer. We had our first meeting with her oncologist yesterday and received confirmation of the seriousness of the situation and a mixed prognosis.
The bad news is that her cancer is stage 4 and incurable and because the tumors are extensive and not in a mass, it is inoperable. Chemotherapy is also ineffective against this cancer, so our treatment options are limited.
It’s called metastatic carcinoid cancer. The only place they can find evidence of it is in her liver, but it originated from somewhere else and they can’t seem to find the source.
However, the good news is that this is a slow growing cancer, so we have time. How much time is the focus of our next step. The other good news is that the tumors are incredibly small, so small in fact that they didn’t show up on the radioactive scans. They did however show up on the MRI, but no other cancer could be found which is also good news.
So the bottom line is that we have time. It’s very serious, but not so urgent that we need to move into treatment right away. She’s probably one of the youngest people to ever get diagnosed with this thing since it’s generally a cancer that affects people 55+. (Sounds like Kelly, huh?)
The plan is to run a few more tests to see if we can find the source, and then begin the vigil of benchmarking the changes of the tumors she has. So every couple of months they will rescan her to see if there is growth. After 6 months or so, we’ll be able to get a sense of how slow or aggressive it might be. That will give us a better handle on the amount of time we have to figure out how to treat this.
As of now, we’re going to hold off on any intervention and start looking around the country for the research hot spots. Her biggest chance to beat this is in the world of future drugs, so the slower growing this monster is, the longer we’ll have for a breakthrough, which we fully expect to happen.
The other good news is that Kelly is symptom free. A lot of times, this cancer isn’t detected until people are experiencing the affects of what is called carcinoid syndrome with a lot of unpleasant symptoms. Kelly isn’t experiencing any of this, so we’re thrilled about that. They found these tumors accidentally while removing her gall bladder a few weeks ago. That was a blessing to catch it when we did. Kelly is doing remarkably well and in good spirits. As most of you know, Kelly has a wicked funny sense of humor and has been drawing on it all week. As long as we’re near her, we’re fine.
We welcome your prayers and your positive thoughts and will keep you in the loop as our journey progresses.
Linda, Bob, Cori, Kelly & Alex