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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 consis…
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Feeling the love

Our dear friends, the Janet Alder family, are doing a fundraiser for Aaron and Lorraine on Halloween. If you live near to Millville, please stop by and enjoy some of Janet's famous spudnuts.


http://www.cachevalleydaily.com/news/archive/2018/10/26/millville-family-offering-halloween-spudnuts/#.W9U7FaeZNX8

Whole Brain Radiation

Aaron's MRI showed too much cancer progression in his brain and now if he wants to qualify for the Huntsman drug trial he has to do whole brain radiation. This is something he has tried to avoid from the beginning because of the effect it can have on a person's cognitive abilities, but we really don't have many choices at this point so on to radiation it is. He begins today and will have a radiation session every day for 15 days with weekends off.
He will receive lower doses of radiation to the whole brain in order to kill the cancer we cannot see and he will receive higher doses of radiation that will be targeted at actual lesions in the brain that can be seen on the mri.  We hope this treatment style will reduce memory problems often associated with whole brain radiation. The actual type of radiation treatment is called tomotherapy and one of the nice things about it is that it avoids the hippocampus, the part of the brain associated with emotions and memory.

Aaron'…

A few Hiccups

Aaron wasn't able to begin the new treatment last week because he needs an MRI and that MRI got scheduled the end of this week and then we had a blessing that got that appointment moved up to tomorrow. I am a little nervous about this MRI because a lot of drug trials are picky about cancer activity in the brain. The drug trial he did two years ago kicked him out when they saw a spot on his brain. Aaron's cancer has moved to the brain, we saw this on the last MRI, but this drug trial will compare tomorrow's MRI with the one he had the end of July and if the cancer seems stable we can go ahead with the treatment this Thursday. The past few weeks have been a good reminder to me to practice "being still". Other then that I think we have all the other tests completed to qualify.

Drug Trial

Thank you for your prayers and fasting and words of love and encouragement. We have most definitely felt the power of your faith.

Aaron doesn't have the genetic marker we were most hoping for (MET) but he does have the marker that qualifies him for the drug trial at Huntsman. We are grateful he has an option besides chemo. Aaron will be the only person in Utah in the drug trial and the doctor is really excited about it. In the Petri dish, in mice, and in theory this treatment works, but the real test will be if it works in Aaron. We are about finished with all the requirements to get into the study (scans, eye exam, blood tests, etc) and he will begin this Thursday. He does have to have another lung biopsy shortly after he begins and then again at the end when he shows signs of progression on the drug. My hope is this drug will work and work long enough for there to be another good option besides chemo. Maybe in the meantime Aaron will develop MET (because it is an acquired geneti…

Asking For Your Faith and Prayers

This is Aaron's sister Alison posting. Last week on Tuesday morning, Aaron had a lung biopsy done.  Like his previous biopsy, this one also resulted in a collapsed lung. He was in quite a bit of pain that day and through the night. On Wednesday his lung was able to seal itself, and he was able to come home Wednesday night. Aaron deals with his pain such a quiet way. He doesn't complain, he just bears it. And I don't know how, but he manages to think of others when he's suffering himself. I'm sure I don't need to tell you all how remarkable he is! There's no one quite like Aaron.

Lorraine texted the family today with a request that we pray and fast for Aaron. We felt that there would be many people out there who would like to join with us, so we'd like to share the invitation to all who would like to join in a special fast for Aaron this weekend.  Here is part of Lorraine's text:


"I don't know for certain what to ask everyone to pray for bu…

New Scans

Aaron had his first scans since starting the immunotherapy drug Keytruda. The results aren't good. There has been a definite increase in tumor size and quantity. The report says there are innumerable tumors in the lungs as opposed to the couple that we have been watching. It's also in the bones and lymph nodes. He didn't have an MRI and so we don't know what the cancer looks like in his brain. Most likely there is more there too. This report is surprising to us because Aaron has been feeling better these days.

We are hopeful he can get a needle biopsy this week and praying it doesn't collapse his lung like it did after the last biopsy. Drug trials are our only option at this time, and we can't really move on any trials because they all require a washout period (usually 4 weeks) and this biopsy, which can take up to three weeks to get the results. We hope to have the drug trials researched and one chosen so when the results are in we can move quickly into a new …