Big A

Left image from October 2016 scan. Right from December 2016 scan Aaron met with his doctor in California and discussed his last two ct scans. He is very pleased with Aaron's response to this drug trial. Things are definitely clearing up in his lungs. I was grateful our friends were able to get Aaron a flight to California this week because I slipped on the ice and broke three bones in my right ankle and needed surgery on Friday. Having him be able to fly home was a blessing and it gave us extra time with him the day after Christmas. Things always work out.

"Good people all, this Christmas time Consider well and bear in mind What our good God for us has done In sending His beloved Son With Mary holy we should pray To God with love this Christmas day In Bethlehem upon that morn' There was a blessed Messiah born..." Wexford Carol Merry Christmas.

Aaron spent all day at the infusion center on Wednesday. They had to draw blood every two hours. His infusion began at 8:30 a.m. and the final blood draw was taken at 6:18p.m. He says this should be the last time he has a long day like that and soon his trips to Sacramento should be shorter.  I think about how hard Aaron works at beating this cancer. He does it like he does everything else, with a smile on his face and without complaint. Whatever is thrown his way he adjusts and takes on what he has been asked to do whether it be in church callings, trials, work, family, etc. He is the most steady person I know. I often ask how I got to be so blessed... "... somewhere in my youth or childhood I must have done something good Nothing comes from nothing Nothing ever could So somewhere in my youth or childhood I must have done something good... Save Save

Aaron's scans look good. This is a part of the report: "Bilateral nonsegmental parenchymal opacities are SUBSTANTIALLY DIMINISHED in size....the size of the dominant lesion in the right upper lobe is SUBSTANTIALLY DIMINISHED" Before starting Neci the largest nodule in Aaron's lung was 2"x2", so to see the words substantially diminished is great news. The radiologist this time did not indicate the size of the nodules in this scan. He wasn't as thorough in his report, but all indications are the  cancer is shrinking .  Besides his dry skin, he feels cold all the time. He went on a business trip this week and had the heat turned up to 80 in his hotel room and he still felt cold. A friend gave us an electric blanket that is coming in handy these days because the rest of the family likes the thermostat set at 70:). We are grateful things look good right now. We never know what's around the corner, so we just live today and give thanks for where we ar...

Strolling down memory lane. BYU campus. Another dose. Another week spent in Sacramento. Aaron drove to California again; Sunday to Thursday and he will fly back tomorrow and be home for Thanksgiving. He didn't have any side effects from the last dose. No migraine, chills, etc. He is experiencing painfully dry skin and the lovely red rash he had while on Tarceva. All small prices to pay for a treatment that works.  We are grateful that the Lord opened this door for Aaron to be a part of this drug trial. There is no question in my mind that this is what he needs to be doing right now. It is a humbling feeling when we realize how involved the Lord is in our lives. How much He cares about each detail. How He opens doors for us, strengthens, comforts, and loves us. It is comforting to know that what we are experiencing is a part of what He has planned for our lives. It looks nothing like the plans we made for ourselves 15 years ago when we got married, but if this is what the...

Aaron had his scond dose of Neci this week. I am just going to cut and paste his own words from an email he sent to a friend:  "Yesterday went well. They loaded me up on Dexamethasone, Benadryl through IV, Tylenol. And it seemed to do the trick. My breathing also seems to be improving. The rash is back on on my face, neck, chest which is a good sign.       I've been in touch with a lady from Chicago who is already enrolled in the study (since August). She and I are the only ones in this study with C797S. She's had a fantastic response. Her brain mets completely resolved, and her lung scans showed significant improvement.    Interestingly, there are only 6 of us in this drug trial so far. And UC Davis is the only location in the country doing this trial so far. Dana Farber will be getting it in the coming months as well as a few others.    I'll get my next scans Dec 1st. As long as my tumors haven't increased in size by 20% or m...

First Dose... Aaron received his first dose of Necitumumab (Neci for short). He drove to Sacramento on Sunday to be there for some pretesting on Monday and receive treatment on Wednesday. He ended up being gone a day longer because the side effects came in full force. He had a migraine, blurry vision, nausea, and chills. The side effects should lessen after the second dose. We are grateful the Lord has opened this door for us. It feels good to have this treatment going.

We had a great visit at UC Davis this week. Aaron is on track to beginning his new treatment there. First, he has to have new scans. Second, he has to complete a seven day washout period by not taking his current medication, Tagrisso. When these two things are complete he can begin. We are almost there. About a week and a half and he should be able to start. The timing for Aaron couldn't be better. Soon this drug trial will be closed to patients who have ever taken Tagrisso. We are anxious for him to get going. We are feeling blessed... The cancer facility is small, but the staff taking care of Aaron is wonderful. The spire of the Sacramento Temple. Our temples are symbolic of all that is truly important to us. This is the first time we've had a nurse stand on a chair to measure Aaron's height. Usually, Aaron just pulls the bar up for them because none of them can reach that high. 

We received great news last week. Aaron's biopsy results show that he has a specific mutation (C797s) we were hoping for. There was a 3-5% chance this mutation would show up, so we are feeling blessed and grateful. There is a drug trial at UC Davis targeting this specific mutation. It is the only drug trial in all the country focusing on this. One of Aaron's oncologists is personal friends with the doctor over the trial. Aaron's doctor made a phone call saying Aaron needed to be in it. We received a call from UC Davis that same day saying there is ONE spot open and it is being reserved for Aaron. So many miracles. We have been learning that some miracles are obvious and others are such that we have to really look for them. We are grateful for the obvious miracles of this week and for the many reminders that the Lord is truly in the details of our lives. We have an initial visit with the UC Davis doctor this week and Aaron will need to have new scans and some other te...

A long story made short: TWICE the wrong tissue sample has been sent to be tested. TWICE. It's pretty unbelievable that this has happened. What does this mean? It means we are STILL waiting for biopsy results. Aaron's correct tissue sample will be overnighted today. We will now wait another 11-14 days for results. These results are crucial to our knowing what treatment Aaron needs. We are thankful our prayers for his health to stay steady, while we wait for results, are being answered. He still works full-time and looking at him and listening to him you wouldn't know he has lung cancer. I keep hoping we find blessings in these delays. We have had plenty to keep us busy while waiting for results. Maddie has been back in the hospital for the past three weeks. Basically, she was sent home prematurely after her five week stay this summer. She is doing great! The only reason she is still there is because we insisted she stay until we see her numbers plateau and go as high as...

After four days in the hospital Aaron is home convalescing. He still has some air in the lining of his lung that needs to go away, but it hasn't increased in size for a couple of days therefore the doctor felt good about letting him come home. He needs some supplemental oxygen and time to let his body heal from being poked, prodded, and cut. Not surprising he's a little sore after this procedure. We hope to get results in a week.

Aaron had his needle biopsy today. The procedure went well except for the fact that none of the pain medications worked. It was not a pleasant procedure. Afterwards, his x-rays showed pneumothorax (a collapsed lung). A chest tube had to be placed and again the lidocaine did not work or any other medication he was given to make it a pain free procedure. Our Maddie said, "Dad said it was painful and that means it was bad because Dad never says things hurt even when you know they probably did." Very true. We all feel badly he's had to have such pain today and that he had to go it alone for the most part. I usually stay with him, but today was the first day of school and we hadn't planned on being at the hospital so long. I had to get home. We are grateful the needle biopsy is completed and that Aaron found a way to have it tagged as high priority. Hopefully we can get results back in two weeks instead of four. Bak to school. I wish I knew how to crop all the funny de...

Boston Harbor Boston was a success. Very helpful visit with an amazingly sharp doctor. The next step is a needle biopsy. We wish we could have had it done at Dana Farber (Boston Cancer Hospital) but Aaron can't fly for a week after the procedure. They could have gotten the biopsy completed and results back within a week. It will take Huntsman a month to get results back, but first they need to find room in the schedule for Aaron to have the procedure done. Always hiccups along this journey. Boston oncologist (Dr. Oxnard) did do a blood biopsy while we were there. The results were good. The level of EGFR mutation is very low. This means Aaron's cancer is "quiet." It means we have some time to do a needle biopsy and figure out the next best treatment. Oxnard commented on the fact that what we see on the scans as cancer progression doesn't look like the progression we have seen in the past. He said it's possible this isn't progression. It probably is, b...

We took our family on a two week road trip to see historical sites significant to our church (The Church of Jesus Christ of Latter-day Saints). We started out in Rochester, NY and ended in Independence, MO. Along the way Maddie got pneumonia.We were in the middle of nowhere (Nauvoo, IL) when we knew she was in trouble. We arranged to move our flights up by two days, but we still had to get to Kansas City to catch those flights. Aaron and Maddie flew out two hours ahead of the rest of us. He got her home and set up on supplemental oxygen and returned to the airport to get us and then took Maddie to the ER. She spent 33 days there. It is our longest hospital stay to date. Kaitlin and Brigham each spent time there too. Kaitlin two weeks and Brigham four. We are all home now and trying to enjoy the last bits of summer. Back to School is quickly approaching. A few pictures from our journey (not necessarily in chronological order)  A little bit of Philly graffiti  Phila...

At the end of last summer Kaitlin was given the opportunity to declare her wish to go to Hawaii. Thanks to the Make A Wish Foundation of Utah and Hawaii that wish was granted AND she took our entire family along. This trip was originally going to be scheduled for early April, but so glad it didn't work out because Aaron ended up in the hospital precisely when we were going to be scheduled to go. We are thankful the timing worked and everyone's health was steady.  We can never thank the Make A Wish Foundation enough. This is the second wish granted to one of our kids, and they are the most memorable trips we have had. So many generous people... Kaitlin and Maddie participated in a dolphin adventure, but a more memorable adventure took place when we went snorkeling and our captain let us get into the ocean and float amongst a pod of 10 curious spinner dolphins. Thank you Make A Wish Foundation!! Loving the sun, the waves, the sand, and all things Hawaii The kid...

Sorry for the long silence. I sat down many times to write in the last months as we approached and then passed our one year mark since diagnosis, but nothing ever came of it. Here are a few "highlights" from the last little while. About five months ago Aaron's first cancer medication, Tarceva, lost its effectiveness. Not what we were hoping for or expecting. During the process of waiting for test results the FDA approved the next treatment Aaron needed: Tagrisso. Days after it became available Aaron had his first dose. It wasn't an easy medication to get his hands on, but he and Jeff made some calls and figured it all out. Tagrisso has been doing a great job. Aaron had scans a month ago and they were clear of any obvious signs of cancer. He's having the best response we could hope for. The side effects to this drug are dry skin and painful mouth sores.  Recently, we thought Tagrisso was losing its effectiveness too. We were not prepared for that kind ...