Ryan's Rage Against Cancer

10/07/2026

Hey Ragers! It's been a minute.

But no news is good news around here, and we get to live life a little more normal for a bit. Not being tied to chemo is truly a blessing. But getting caught back up on normal life, I'm not sure if we ever can.

We finally got Harper in and she got her permit successfully on the 1st try. She had Homecoming this last week with her friends. Ryan was going to be pulling the FFA float, but they were rained out. She has been busy with volunteering at the zoo, and animal shelters, getting in riding time working barrel racing.

Ella has been practicing more and more with her baking and cheesecakes, and opened up her own spot on our front porch for her treats. She can barely keep them in stock, once she posts they are all so good. Now Ryan's even starting to try some and feels like he can ease up a bit on his strict diet just a bit. Between the dental office assisting, Chiefs or Royals or baking and her friends she stays busy. But is also a big help to us when we need that extra hand at home with everything going on.

Now for the updates you really want....Ryan has a CT scan this week and an appointment with Dr Sun at KU.

His CA-19 marked has dropped an unbelievable amount.

CA 19-9 is a tumor marker measured with a blood test. It is most commonly used in pancreatic cancer to help doctors track how the cancer may be responding to treatment over time.

Today his CA-19 marker was the lowest it has ever been since this started at 432.7 (below 35.0 is considered normal). His high was at nearly 34,000.

Now the Tumor itself!! Some of the BEST news!!! Dr Sun was VERY excited. There is substantial shrinkage in not only the main tumor but also Ryan's liver tumor spots. We did have 3 spots completely removed and are gone (that are not measured here) by the histotrispy. And the center of the tumor has had a reduction in size, and the histotripsy was shown to have removed 40% of the center of the tumor. That is not shown in this measurement either.

Now the main tumor and his additional liver spots are all showing a large amount of response and shrinking according to his doctors and he is responding very well.

Access to the Drug:
This has been a big issue, and still was today. When Ryan went in our insurance was still not approving the medication. I've written letters to our state representatives, I've been on the phone with BCBS, and KU told us not to worry it would happen. But as of his appointment today it did not. As he sat in the office they told him they had not had any success yet, and asked him how many pills he had left. They told him they were finding extra pills from the Expanded Access Program to get to him. So credit to them for doing everything they could to not leave their patient high and dry.

But give it 15mins and another nurse walks in, and it is NEW NEWS, she had been on the phone and found a new program that just happened. An exception program that opened today. For patients that like Ryan. If they were on the drug prior to the FDA approval, in the EPA program, have Doctor's authorization, and repeated insurance denials. So Ryan's exact situation. In that case Revolution Medicine will provide the medication to those patients for free. So she handed Ryan over his next 30 day supply!!!

Thank god above for the mountains you are moving for us up there! Cause I know they were big ones, and we sure felt that!

The only big issue he is having is the rash. Luckily it is not much on his face....his arms are taking the brunt of the hit. He may hate me for showing that picture, but to give you an idea of what we are trying to deal with. I've told him, and Dr Sun did today as well, that he needs to cover them even more with sun shirts during the day when he is out. He doesn't like to listen to either one of us though. He told him that the daily exposure is making that worse, and his skin is alot thinner, so when he gets a cut or stratch from work it just bleeds. He had his first couple of random people ask him if he had gotten in a fight with a rabid squirrel, or beat himself up. He told them no just a fight with pancreatic cancer. 🤣 He did get in with Cornerstone Dermatology, bless their hearts, he is their first pancreatic cancer patient that they have that is on this drug. I tried warning them. Ryan might be a bit much for them. But they are trying, and we appreciate that.

Thanks for hanging with me, if you are still there for my long update! We truly appreciate you so very much. All your prayers have got us this far, and we aren't stopping now!

09/04/2026

Some temporary good news…KU has been able to secure 30 more days of pills for Ryan.

They have not gotten approval yet from Blue Cross Blue Shield which is maddening as we are seeing other patients get their approvals

But they said this gives them more time to keep working the systems and their doctors prior authorization approval with them.

At least for now, it’s good news going into the weekend that we don’t have to stress over only 9 days left now. He has a 30 day extension on that!

Thank goodness! So your continued prayers yesterday worked! Our Rager team is the best!!! 💜

09/03/2026

Well Ragers as of now no news is good news….maybe

We recently got to get away for a long weekend to celebrate some belated birthdays for Ella & Ryan & took along some of her friends with us.

Still waiting to get into that dermatologist. KU can’t get Ryan in till Mid December. So we tried Cornerstone, that was recommended. They could see him the beginning of October so we jumped on that appointment.

KU is fighting the fight for us, to keep Ryan on his drug daraxonrasib which is now FDA approved and known as Rasonque.

When we called our Blue cross blue shield, they told us he would be denied for 6 months as it is a new drug to the market and we would have to pay out of pocket. That cost $29,800 per month.

Don’t think after the tears and calls to my mom, and best friends the Rage didn’t start. Then an email to Josh Hawley, then maybe some panic of do I call our favorite realtors next to get the house on the market ASAP. Not having the drug isn’t an option.

But right now we are waiting, hopefully KU can argue Ryan’s case with our insurance. There will be a ton of relief in this house once we know we have this worked out.

He has 10 days left currently 😳🫣

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!!