Big A

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 situatio...

Aaron's scans look amazing! That's how his doctor described the results. He is so happy with Aaron's response to the current treatment. We are happy and grateful as well. He had his 10th dose of Chemo on Thursday and has been pretty tired and a little nauseous since. We are hoping it will pass and he will have another good couple of weeks like he did after dose 9. Halloween 2017 Left image taken Oct. 30, 2017 Right image taken Sept 14, 2017 It's esiest to see the improvement if you focus on the lower right corner of each image.

Aaron is still doing chemo. He had dose 9 of 6 a week ago. We thought he would being doing a maintenance dose of just one chemo drug, but instead he is still doing the same two IV chemos, one oral chemo, and recently a third IV drug that shuts down the blood supply to tumors. Once he passed dose 6 we noticed he became significantly more fatigued and nauseous. He dropped 18 pounds in under two weeks (thankfully with all his In-N-Out meals he had extra weight to lose for such a time). This past week has been better. His dr. added a few meds to help with energy and nausea and it seems to be working. He still feels somewhat sluggish, but improved enough that he can keep down quarts of ice cream and doesn't need a four hour nap each day. He had scans a month ago and they looked good to us. One dr. wanted to change course because he saw some progression of the cancer in the lungs, but we have learned that you don't jump to a new treatment at the first sign of progression, especiall...

Let Chemo Round 4 Begin! I am happy to report that Aaron's awful mouth sores eventually settled down and are now minimal enough that he can eat and talk normally. He had round 4 a week ago and he has done well with it. His main side effect is the fatigue, but even that has been manageable. We are feeling deeply grateful for every day we are given. We feel blessed in endless ways.

A week and a half ago Aaron had his third round of chemo and to that point the side effects had been pretty mild. He struggled mostly with fatigue until two days ago when his mouth and throat filled with painful sores. You can see in the photo how swollen the sores have made his mouth. He can't eat and does not sleep well. He is able to get naps in throughout the day, and I am always glad when he sleeps because it's a time when he can escape the pain. He rinses with a prescription mouthwash every hour. It has lidocaine as one of the ingredients and it helps to numb his mouth a bit. This experience has reminded me of the phrase, "In like a lamb, out like a lion." I thought this chemo was going to just be as simple as Aaron sleeping a lot more, but as we move in to the last doses, chemo is living up to its reputation and it looks like it will go out like a lion as far as the side effects go. His goal is to make it through the maximum 6 rounds. We are hopeful these sores...

Comparison of images of Aaron's lungs. Image on the right is from before chemo and the one on the left 6 weeks after starting chemo. Compare the bottom portion of each image and you will better see how it's doing  its job! Aaron's prescription for gaining and maintaining weight during chemo. In-N-Out twice daily (except Sundays:)

Aaron and his beautiful mother Aaron turned 43 yesterday. His party, if you can call it that, would be a big disappointment to the American Cancer Society who claim title to being the official sponsor of birthdays, but if you know Aaron you know that he didn't care. He doesn't require a lot of pomp and circumstance, in fact he requires none, he just enjoys being with his family and getting new socks, a tie, or a bag of candy from his youngest child. He is always content to let others shine, and a little love and a little thoughtfulness go a long way with this wonderful man. What you see with Aaron is what you get. He is the same steady, happy, and kind person at home as he is at work and church. He bears his burdens with a quiet dignity and never faults the Lord for giving him such a heavy load. He is my very own Captain Moroni , and I have never been more grateful for the covenants that bind me to him and to God. It fills me with hope and joy to know that Aaron is ...

Brig Waiting for his Bronchoscope Aaron had round two of chemo last Friday. I think I jinxed him with the last post because the day after I posted that things were pretty uneventful after round one of chemo, he had problems with his heart racing to the point he nearly passed out while driving. A few of the kids and I rescued him and we eventually got him home. We worried it was blood clots, however, we discovered most likely it was dehydration. Chemo has a reputation for altering the taste of food and decreasing appetite, and due to those side effects Aaron didn't realize he hadn't been taking in enough water. It was frightening, but it has been resolved. He has since been craving double cheese burgers, fries, and vanilla milkshakes from In-N-Out and we are happy to report he has also gained back the lost ten pounds from round one of chemo. Currently, he is beginning to feel the fatigue from round two. Meanwhile, the kids are still in the hospital. Two of them caught ...

Walking the halls at Primary's Aaron's first dose of chemo proved pretty uneventful. He experienced heavy fatigue the first week after the infusion and was able to control the nausea. He gets tired more than usual these days and he can't say he feels 100%. The side effects are supposed to get increasingly worse after each dose so it will be interesting to see how he feels after round two this Friday.  In the meantime, our kids with cf are in for another two week clean out. We spend a lot of time walking hospital halls. Hospitals are great at reminding us that things could always be worse. Making new friends at the hospital.

Chemo Begins A pod with a view All of Aaron's oncologists agreed that it is time to use chemo. He hasn't been feeling well for a few weeks and chemo should give him a boost and take care of the cancer for a while. He will receive two different chemo drugs Carboplatin and Pemetrexed. He will receive his infusions once every three weeks here in Utah. He will also continue to take Tagrisso, the targeted drug he has been on for 15 months. It's also possible he will have the small spot in his brain radiated. Before the chemo infusion he is given two different IV nausea meds that last for 4-5 days. After the 4th day he will take oral nausea meds and that regiment should curb any sick stomach feelings. He will most likely feel extreme fatigue for about a week. Since this is his first dose we are just going to have to wait and see what the side effects are like for him. Looking back, it's been nine months since one of his doctors recommended chemo and Aaron said not ...

Aaron is officially out of the drug trial in Sacramento. Had he not had a brain MRI he would still be eligible, but because he was having balance issues and some slurred speech a few weeks ago, we needed to make sure the cancer wasn't wide spread in his brain. His ct scan showed minimal progression in the lungs and the MRI showed one small, 5mm, spot of cancer in his brain. That spot is what got him booted out of the trial. Now we move on to the next treatment. We will meet with a doctor in Colorado to discuss options and Aaron has already signed up for another possible drug trial in Sacramento. In order to be eligible for that trial he would need another needle biopsy . In the meantime he will continue to take Tagrisso and hope that it is enough to get us to our next step.

Aaron's latest scans didn't show much change from December scans. He can continue with the drug trial. Once scans show a certain amount of progression he won't be eligible for the drug he is taking. I hope that day is still a ways away for us. I finally got all 24 stitches out and am three weeks into my recovery. I have a new found empathy for anyone who has endured surgery. Thankfully I have had Aaron, his mom, other family, and generous friends and neighbors to lean on while my ankle heals. I certainly have not gotten done all the things I thought I would while recovering.