Post Radiation Update

Radiation is completed and a month behind us. Aaron described it as the worst treatment yet. It has caused him to lose his hair and makes his head feel like it has a bad sunburn. He had such terrible balance during radiation that caused him to fall on occasion. It was all around a bad time and was compounded by the fact that our three kids with cf spent 3 weeks in the hospital during the 15 days Aaron did radiation.

To qualify for the huntsman drug trial Aaron would have to go through a 30 day wash out period where he would received no treatment of any kind. We didn't feel like we could wait a month after radiation to qualify. Aaron was in bad shape and we couldn't see how he could go a month with no treatment in the condition he was in. He seemed to have hit an all time low in this cancer fight. Aaron's brother, Jeff, seems to never sleep and has an an incredible capacity to research and assimilate all that research in Aaron's behalf. He found a treatment that consists of a combination of three fda approved drugs, but the downside is they aren't fda approved to use together, and the bigger downside to that is insurance only pays for one of the three drugs. Another potential downside is this combo has not been tried on a human. As far as we know only mice in a study in Israel have been injected with the drugs in combination. So, with no conventional treatments left, we all felt it was best to proceed with this somewhat rogue treatment.

Aaron has had two doses, and a third on the way this week. It causes bad rashes, some of which bleed frequently, and the tips of his fingers are splitting and causing discomfort (imagine having paper cuts at the tips of all your fingers), but true to form, Aaron tells me how happy he is. A month ago his health was going down hill quickly, but since starting this new treatment it has turned around and I see him heading upwards. He is slowly gaining strength. He is steadier on his feet and doesn't need as many naps and is grateful for some energy to work. He really appreciates the fact that he still has his job and is able to contribute to his company. They have been so good to him and our family. His oxygen saturations have also improved and he no longer needs to wear oxygen all day.

Back to one of the big downsides to Aaron's new treatment. We are responsible for paying out of pocket for two of the drugs. This will end up costing tens of thousands of dollars. A while back, before we knew we'd be doing this treatment, a few friends reached out to us and asked if they could set up a gofundme for Aaron. He didn't feel comfortable with that and declined. Jason Lyle, Ryan Jensen, and Jon Watkins decided to set one up anyway without our knowledge, and it ended up being a very timely thing that has been a great blessing to us as we figure out how to pay for this treatment. When we needed this help the very most the gofundme AND the donut fundraiser on Halloween, hosted by long time family friends the Alders, were already in motion. Some may call this coincidence but I like what Elder Wirthlin says, “There is a guiding hand above all things. Often when things happen, it’s not by accident. One day, when we look back at the seeming coincidences of our lives, we will realize that perhaps they weren’t so coincidental after all.”

Aaron's first treatment was on Halloween. It is the first year we did not trick or treat with the kids because the infusion lasted 9 hours. We were so touched to receive all the photos from Aaron's mom chronicling the donut fundraiser. I cried as we read the notes and counted the money gathered in the big orange box. I took every penny to the bank and placed it, with a heart full of gratitude, in a special account our bishop asked us to create for this treatment. Over the years, I have learned how necessary it is to allow others to help you bear your burdens. It has not been an easy lesson to learn. We always want to think we have things taken care of, but life isn't meant for any of us to do alone. In fact it's impossible to do it alone and what a great blessing that this is the case. Thank you to all who help ease our burdens.

Our 10 year old worried about Aaron losing his hair. He decided to get a really short haircut before radiation to ease her into the idea. He wasn't feeling well, but insisted on doing this. She now says she likes him bald:).