Skip to main content



It seems like things keep changing faster than I can keep up. Aaron started a new chemo, Gemzar, in April, but after two months of it, scans showed there was definite cancer progression in his lungs. He then completed the four week washout period (a specified amount of time you have to be off all cancer treatment drugs in order to qualify for certain drug trials) and then decided that instead of a drug trial consisting of two immunotherapy drugs combined, he would stick with the one immunotherapy drug, Keytruda (Pembrolizumab) that is as simple as going to the dr. office and running it through his port. The drug trial required a total of three needle biopsies over the course of his treatment. His biopsy,about two years ago, was painful and went from an outpatient procedure to a week-long stay at Huntsman Cancer Center. Drug trials also require a lot more dr. visits and tests, and in the case of the Huntsman drug trial a lot more side effects. Aaron just isn't up to all those thin…
Recent posts


Aaron has consulted with five oncologists and the good news is he still has multiple options. He can choose between two chemos from different families than he has used before and three drug trials. We have a few concerns about the drug trials. First, they all require a needle biopsy and the last one Aaron had caused his lung to collapse and landed him in the hospital for a week. Second, he doesn't have a tumor large enough to get a good sample. Third, we would have to potentially wait for two weeks for results of the biopsy and another week before starting a drug trial. Since Aaron has not received any treatment for his cancer for nearly two months he has opted to do another chemo. He will start next week. We are hoping this chemo will help him feel well enough to do a needle biopsy and lay the groundwork for doing a drug trial (we would really like to try a few of the ones available).  His drug trial options are at Huntsman, Dana Farber in Boston, and UC Davis in Sacramento. Bos…

Not What We Thought

Aaron had his scans on Wednesday and the results are not what we thought. I guess that "knocking on wood" business doesn't really work. Aaron met with two of his oncologists yesterday to discuss his scans and his next treatment. 
In the brain, there is a spot that indicates a small stroke. The kidneys appear to be stressed from the chemo and some cancerous nodules in the lungs appear to have increased in size. It has been 5 weeks since Aaron has had any treatment and my simple way of seeing things says to just go back to what he was doing and this will resolve (I would suggest taking out the most toxic of the two chemos), but his doctors don't agree. Aaron will fly to Colorado this week to discuss his options with his dr there. If there is a promising drug trial Aaron should be able to start immediately as all drug trials require a "wash out" period of three weeks (meaning treatment-free for at least three weeks). We will know more in a few days. 
I think …

Taking A Break

Aaron had a rough three weeks. Besides heavy fatigue, he also couldn't get his nausea under control. He says he would rather be tired than nauseous all the time. I had to take him in to get fluids last week because he became dehydrated. Due to these symptoms and the fact that his white blood count and platelets are low AND he now has two blown veins, he is going to take a week off chemo and see where his numbers are next week. His blown veins also mean it is time for a port. We probably should have gotten one placed months ago. Live and learn I guess. He has scans next week including an MRI. Because his oxygen saturation # is good and he doesn't have any breathing difficulty, I am going to guess his scans will look fine. I should probably go knock on some wood just in case:).


I'd like to point out two things from this photo. One, Aaron is sleeping while sitting up. Two, he has fallen asleep while in the middle of texting someone. If ever you receive a text from him full of nonsense, you will know why. His white count is pretty low and that makes for one tired Big A. Something this picture doesn't show is that he still gets out of bed and goes to work each day. It doesn't show what all is requited of him each day in order to preserve his life. And through it all he is still pleasant and full of hope and optimism. I wish he didn't have to go through this cancer, but  Gandolf had something to say about such sentiments: "so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us." Fitting advice.

Good Scans

Aaron's scans from December 27th look good. Good, meaning there is evidence of cancer, but it hasn't grown since the last scans. The cancer appears to be quiet right now. He won't scan again for six weeks and that means at least two to four more rounds of chemo before we would potentially have to switch to a new treatment. It is a nice way for us to end 2017 and ring in the new year!

Christmas Chemo Dose 12

Aaron had dose 12 yesterday. The week prior he didn't feel too well and we aren't sure why. What we do know is there isn't anything alarming from his blood work and his oxygen saturation is good. He has even been able to gain back the weight he lost during the week he didn't feel well. He will have scans two days after Christmas and that will tell us if this chemo is still working. Fingers crossed.

In the meantime, our cf kids spent another 2-3 weeks in the hospital. Between having kids in the hospital and Aaron feeling very sick Thanksgiving day I hope to never repeat a Thanksgiving like that again. Thanks to some very generous neighbors we had a real Thanksgiving dinner the day after Maddie was discharged. Our friends and neighbors are the best.

I've been thinking a lot about what Elder Maxwell teaches in his talk "Endure it Well". There are so many golden nuggets in that talk it's hard to choose what sums up my feelings most about our situation at …