Ryan's Rage Against Cancer

08/26/2026

Big news today in the world of Pancreatic Cancer, daraxonrasib received FDA approval. And while this is exciting news, for us we can't help have it adds some worries in our house.

This drug has been working and Ryan has been getting it through a trial expanded use access program. We have been extremely fortunate that it has then been at no cost to us.

With this FDA approval, things will shift to going through insurance. And with our problems with insurance and their refusal to pay for what they see as new treatments. I can only imagine that they will fight us on paying for a brand new medication. So this raises HUGE red flags for us and concerns.

Lots of questions and concerns....Will Blue Cross approve the medication? How much will they cover? We have heard the pills can be as much as $1000 a pill and Ryan takes 3 a day. Will the pharmacies be able to fill the prescriptions?

We know need is huge and there are so many trying to get this medication. We are so grateful KU has been able to get Ryan access to it. But will that continue, We will have to wait and see. When the stakes are so high it, it makes it a little nerve wracking. And then on the flip side we are also so happy for the access for so many people that we know are waiting and trying to get to this drug too. When time is limited, the sooner the better.

As for Ryan he is doing well. He has the referral for the dermatologist at KU. But typical Ryan style you can't get him to slow down at all. Work is as busy as ever, and so he hasn't had time to schedule the appointment. He is getting the rash that comes with this drug. But hopefully once he can get into the dermatologist we can get it managed. They do tell us this should be about the peak of it, so it shouldn't get any worse. So that was good news there.

We have a follow up call with Dr Burns on Sept 13th to discuss his thoughts on the histotrispy and where he thinks we go from here.

Thank you all again for following along with us. This community is amazing and the love you have shown our family

https://www.facebook.com/share/p/1AL5wpn5MR/

Send a message to learn more

08/14/2026

We’ve been a little quiet around here lately. Getting use to a schedule without chemo again is nice. Taking the new daraxonrasib pills daily, comes with its own challenges. But definitely a game changer. He is battling the skin rash, and some nausea. But has a ton of energy back. He has a referral in for a dermatologist now. He already has 5 different prescriptions, creams and sprays. But staying on top of it as much as possible.

Ryan has now completed his first month on the new daraxonrasib. He met with Dr Sun and he said it’s too soon to see any results in the size of any of his tumor spots from it. But he did see a huge drop in his tumor marker numbers.

His tumor markers dropped from 27,369 down 3,231. The lowest it’s ever been since we found out he had cancer. For reference a normal range to 35 and below. So we still have a ways to go. But we are very happy about this.

Now for even more exciting results of the MRI after the histotripsy

We are waiting to hear from Dr Burns and will know even more, because Dr Sun and KU didn’t perform the procedure they prefer we discuss with Dr Burns. So we are interpreting the mycharts results in the meantime ourselves.

So not only are the 3 liver spots, that the histotripsy targeted gone. But we hoped the procedure would trigger a abscopal effect and cause other spots that were not treated to get smaller as well. Multiple of Ryan’s other liver spots have all now measure significantly smaller. And with Ryan this seems to have happen.

The abscopal effect is a rare medical phenomenon in cancer treatment where localized therapy—causes tumors outside the direct treatment field to shrink or disappear.

How It Works local treatment destroys cancer cells in one specific spot. Dying cells release markers and antigens that wake up the immune system. Activated T-cells travel through the blood to attack distant tumors elsewhere in the body.

On his main tumor on the tail of his pancreas that they focused on, now shows signs of necrosis.

So we really couldn’t ask for better, and very happy with these results. Especially when we were told this first scan might show things worse and to not be worried. The full effects wouldn’t show for a few months and it can look worse before it looks better.

We are so so very grateful to all of you this truly would not have been possibly without you. It was almost a year ago that my friends said to me you tell us when you are ready to cry uncle and we will jump. And jump they did! With our friends, family, neighbors, community and all of your connections and truly the god moves
we would not have been able to raise the funds to make this happen. Please know we will be forever grateful!!

So now we are enjoying some time celebrating this win with friends and family & soaking in the last days of summer!

07/20/2026

So just about one week in on daraxonrasib and getting adjusted to some new side effects. Ryan did say initially it was the worst he’s felt since starting treatment. Thankfully that hasn’t last too long.

It was sudden waves of nausea that would come over him. I did find out from him on Saturday that he was avoiding taken the zofran that they prescribed. And since he may be one of the only people in the country that is on this medication after a pancreas histotripsy, which opened up the tumor and made it more accessible to medications, it’s no surprise he is having some effects. I told him he NEEDED to be taking it. At least for the next month or so. They told us he should adjust to most symptoms.

On the positive side he has gotten a lot of energy back so that’s a huge bonus!

The girls and I couldn’t help but laugh just a little at him as he complained about his new skin care routine. We told him now he knows a little what us ladies go through. But putting lotion on a few times a day is much better in the end, then having to go for chemotherapy anyday.

We have been warned that sunlight can very much aggravate the blisters and rash that can come with this medication. Which of course most of you know our love of the lake and sun. And Ryan’s oncologist knows as well. He told us we could go out till 9:30am. 😳🫣That just doesn’t work well for us. So we stocked up on sun shirts and large hats, and the best sunscreen. Although he did refuse to wear the hood 🤣 He reapplied extra layers of sunscreen. So far so good with no rashes or blistering. 🤞🥰

Next scans are coming here the beginning of August.

07/15/2026

Here we go! Comes with 5 more meds and creams to keep any side effects to a minimum. But hoping for great results

07/07/2026

More big news here!! Today was suppose to be back to chemo after about a month break, as Ryan prepared for his histotripsy. Which honestly after over a year a chemo felt glorious!!

We as usual packed our computers, snacks, drinks prepared to be there for the day. Ryan was suppose to start a new regime of chemo today. So that meant an extra long day as we would meet with the pharmacist to go over each new drug and possible reactions.

He checked in, did normal lab work and waited for Dr. Sun. However, to our surprise Chemo is officially cancelled for the foreseeable future!!!

While we were in California KU got access to the daraxonrasib drug that we have been waiting for. We knew they had put Ryan on the list requesting access for expanded use. But now Ryan has been approved and his drugs are officially listed as preparing for shipment. He should have them in about a week-ish.

So chemo is canceled. Ryan will start taking a daily pill instead from now on. And only have to go in to check in once a month with his doctors.

daraxonrasib is new pancreatic cancer drug is a new “wonder pill” that is offering hope for patients with this deadly disease after clinical trial data showed that daraxonrasib nearly doubled survival rates for study volunteers.

We will have to navigate other possible side effects, and Dr Sun was quick to warn us that being in the sun is one of them. He knows well our love of being on the boats. More Sun shirts maybe needed stat!!

We know how hard it is to get access to this drug right now across the country, so we are extremely fortunate that we have KU in our backyard here and the Doctors and nurses helping us. We know thousands of pancreatic cancer patients and seeking out this treatment. So we are so very thankful and grateful that Ryan was able to add it to his treatment.

Thank you all for your continued prayers and well wishes we could not do this without you all. We know there are some strong forces pulling from above to make these things happen no question 🙌🙏❤️

06/29/2026

When you are looking for your fireworks this holiday!! Please do not forget to go stop and check out Freedom Family Fireworks!

They supported our family and we want to be sure to show them the love back! We will not forget what they did for us when we are watching the skyline this 4th of July

https://www.facebook.com/share/1DdD5GaqC8/?mibextid=wwXIfr

06/28/2026

You can’t keep us from the lake even if you tried!

Ryan is feeling pretty good today! Only needing ibuprofen no nausea at all, and not even having any flu symptoms or low grade fever that they said he could possibly have today.

So we got out and found the Oroville Lake to at least enjoy the marina & some lunch

Right now we could definitely have nothing but good things to say about this procedure and anyone considering it!!

06/28/2026

We wanted to show you all a video from Dr Burns himself explaining a histotripsy procedure and how it works for those that might be interested

Histotripsy is a procedure that uses focused ultrasound waves to de...

06/28/2026

Success! Ryan did wake up as they warned us feeling very nauseous and spent some extra time in recovery ❤️‍🩹

Dr Burns went into the procedure planning to get 1 liver spot and then spend his time all on the main tumor.

He was able to fully get 3 liver spots and a huge amount of the main tumor on the tail of his pancreas. They did a CT scan and he showed us the before and after images and it was exciting to see. We won’t be able to see the full results for 3-4 months as his body continues to work.

He does feel like he’s been punched in the gut right now, but as long as we are kicking this cancers butt we will take it!

We are back at the hotel with some zofran and pain meds for the night & he’s getting a nap in. Hopefully Ryan can enjoy a late dinner tonight.

Thank you all for all your prayers! Today was even more successful than we could have hoped! ❤️🥰

06/27/2026

Ryan is officially off and in the operating room. Dr Burns was in and went over again that today they plan to spend the majority of their time while they are in the procedure today focused on targeting Ryan’s main tumor on his pancreas.

They estimate 90mins to 2 hours total procedure time. About 2 hours or so in recovery and we will be back in the hotel tonight

They will also hit at least 1 of the tumor spots on Ryan’s liver maybe 2. He did say we can circle back at another time with a 2nd procedure and hit more of those, but since they are small, he wanted to spend his time going after the main tumor instead. This will allow the main tumor to be accessed more by chemotherapy and shrink in size.

He may wake up feeling a little nauseous for about an hour. But should be able to go back to eating a normal dinner otherwise by tonight. And he’s ready for that!!

I had to bring along a few of my good luck charms with me on this trip given to me. IYKYK ❤️U

Thank you all again so much for the prayers! We know they are working!! This village is incredible