Big A

Aaron has been fairly steady lately. His improvement was so dramatic the first few weeks on Tarceva and now it is not so drastic, but we still see signs of improvement. We have been taking walks to try and rebuild his strength. We walk for at least 3 miles, which is pretty amazing considering that just last month he couldn’t climb a small flight of stairs without being winded. We tried walking up a pretty steep hill one morning, and decided to make our way back down when my legs started to burn and Aaron’s lungs caught “fire”.   He struggled with lightheadedness for most of the day after that jaunt, and so now we stick to pretty flat terrain. I still drive him around everywhere because he hasn’t fully regained his strength, and dizziness is still a problem at times. He has driven himself on short errands that are 5 minutes from home, but not too frequently. He also still experiences some pain; mostly in his rib cage. He takes pain medication a couple of times a week, and h...

Jeff and Aaron at PET Scan consultation I have loved reading the stories sent in about Aaron.   People sharing memories of Aaron’s youth often say that they can’t talk about Aaron without talking about Jeff.   It seems that Aaron’s name back then was ‘JeffandAaron’.   These brothers were inseparable.   They grew up very close and always watched each other’s backs.   They had the same friends, played on the same teams in every sport, and were constantly together.   You never saw one without the other.   They always got along well, even as little boys.   I don’t remember them fighting.   Maybe that is because Jeff could talk Aaron into or out of anything.   Aaron got a nice basketball for his 5 th birthday but he only owned it for a few minutes before he had traded it to Jeff for a pack of gum.   Jeff had convinced him that it was a great deal.   Aaron hung on Jeff’s every word.   You could never get after one with...

Maddie turned 12 today, and Aaron was able to present her at church for advancement into the Young Women's program . It was so nice to have a "normal" day. There were no signs of cancer, outside of the rash, to put a damper on this special day. Life is something to celebrate.

His rash looks "more worse" than this:) Aaron’s rash, from the perspective of a five-year-old friend: “Woah! Your face looks scary!” A few minutes later she saw Aaron again and said, “It looks more worse in the lightness!” That’s going to keep us laughing for a long time. She’s probably saying what everyone else is thinking, but too afraid to say it. I guess when you see it every day you don’t realize how bad the rash really looks. Besides, it’s an outward reminder that the medicine is doing its job, and what’s not to love about that? We had a doctor visit on Thursday and he was pleased with Aaron’s progress. He was amazed to see that Aaron was not tied to an oxygen tank. It’s hard to describe how bad Aaron was before treatment began. In fact, Aaron asked the doctor how long he would have given him to live had he not had the EGFR mutation. His answer, “3-6 months.” We believe that means 3-6 months even after chemo and radiation. We are feeling very blessed. We...

What your prayers have wrought . . . I knew Aaron was hoping to attending church yesterday.  He wanted to go to his Bishopric meeting and then if he felt up to it, attend Sacrament Meeting.  Lorraine was a little worried it would be too much.  He has felt better since taking himself off the pain medication.  And the best thing about that is that his pain has been minor.  This is quite an improvement from not so long ago when he went all night and the next morning without his pain medication because he had run out and Lorraine was trying desperately to get him more.  He was miserable then.  We are so grateful for the improvement.  The lessening of the pain must mean the tumors are having less sway on his body.  I’m sure those pain pills were also contributing to his being so tired and sleeping so much.  He has been up and about since being off them.  He ended up attending the Bishopric meeting, then coming home for a rest and going...

A friend told us that it is difficult to search the blog everyday with the lack of updates.   She was concerned that we might lose our ARMY of people sending prayers heavenward for Aaron.   I know how this feels.   When I am home in Paradise I worry about how things are going in Farmington and not many days go by before I just have to come down and see for myself.   I need to know how Aaron is doing.   Is he improving?   Is his pain lessoning?   How are his spirits?   And I also need to know how Lorraine is coping with it all and how the kids are doing.   I feel a need to help, if I possibly can.   So I journey down and stay a few days.   I have been here in Farmington since Thursday.   It is Saturday morning and I thought I might fill all of you in on what I have found here. Improvement is slow but it is easier for me to see it when I haven’t seen him in a few days.   I found him improved with more energy and almost ...

A few weeks ago our Lily, age 4, out of the blue said to Aaron, “We don’t talk die stuff.” True, we don’t talk “die stuff” with Lily, but the other truth is when you have stage IV lung cancer a few of us have to consider the “die stuff”, and the statistics out there on lung cancer are full of “die stuff”. It’s not a topic we entertain for long, because yet another truth is that those statistics don’t include the newer gene therapies that Aaron is eligible for because of that wonderful, miraculous genetic marker he has. I doubt it includes the miracles some have seen facing the same diagnosis. It’s been interesting to feel the bleakness of this diagnosis and at the same time feel an incredible amount of hope, peace, and strength. On the brighter side, Aaron has gained a few more pounds and speaks with a steadier voice and continues to have great oxygen saturations. It is the season when the Christian world collectively thinks of “die stuff”, but we do not forget that after thre...