https://gofund.me/80fe059a, https://www.bonfire.com/kase-medical-expenses-fundraiser/?fbclid=IwZXh0bgNhZW0CMTEAAR0sYCWH0

Kase’s Krew, Cambridge, NE (2025)

09/12/2025

💛Childhood Cancer Awarness Month💛

September is childhood cancer awareness month, which has turned out to be a much harder month for me than I expected with the constant reminders everywhere I look. And while that is amazing that so many people are bringing awareness to it, it is also a hard pill to swallow, because if you look deeper, it is almost entirely families that have been effected by it. I was just like everyone else before our life took a turn. I didn’t like to think about it, didn’t help raise awareness, I just moved on with my life when I would see things about it. It was heartbreaking but it wasn’t happening to us, it didn’t affect us. Until it did. So believe me I get it, I don’t get upset when don’t see friends or family raising awareness, I don’t hold it against them. It’s not something you want to think about. But I wasn’t a cancer parent either, until I was. And now I sit here and can’t help but think, what if every one cared, even if only for this month, what if everyone fought to help these kids? What if everything turned gold during September the way October turns pink? There are stores, and sports teams, police departments, even the White House that goes pink during October. Why don’t they go gold for the children?

4%…. That’s it, 4% is the amount of the federal funding that goes towards pediatric cancer research. Most kids don’t have treatment options that were made for them, they have treatment options that are decades old and were created for adults! And without funding this isn’t going to change. Without more people caring, for even 1 month a year, this isn’t going to change.

Cancer is the #1 cause of death by disease in children. 1 in 285 children will be diagnosed with cancer before their 20th birthday. And 1 in 6 of those kids wont survive. The ones that do survive? 95% of them will have significant health issues by the time they are 45. No one survives this battle unharmed.

Cancer is a thief. It steals their happiness, it steals parents sense of security, It steals time, It steals attention from siblings.

IT STEALS LIVES!!!!

That alone should make you sick to your stomach, that alone should make you want to fight for them! We can make a change! But we have to work together! So next time you see a post about childhood cancer, consider sharing it. Next time you see a fundraiser or a rally, consider sharing it. Raising awareness doesn’t have to cost you a dime. It just takes a second of your time. But if you don’t, like I said, I won’t hold it against you. I will still be here raising awareness and fighting for change.

If you have stuck with me this long, here is an update on Kase. We have been back home now for a month. He has started his new medicine and seems to be doing really well with it. Both Kase and Whitney are very happy to be back in school and have a sense of normalcy. We have to go back to Omaha next week for some tests. We have to make sure his body is tolerating the new medicine and it isn’t causing any problems, he will also have a new MRI done. This will be the first real MRI since his second surgery, so please send us all your thoughts and prayers for a good outcome.

Overall, there isn’t much to update on, Kase has been doing really well and we are all just very happy to be home. However, I do want to touch base on one thing I haven’t said much about. It’s not a subject I particularly like to talk about, but we have gotten some questions recently about prognosis, and a few people express to us how happy they are that he made it through this.

While Kase is doing really well and other than some missing hair, does appear to be a “normal” child. His diagnosis of Glioblastoma is a terminal diagnosis. This diagnosis comes with an average survival range of 12-18 months. No one has ever beaten this disease. That being said, there are a few people who have survived 20+ years with the disease. He is not a statistic and we hope and pray everyday to have many many more years with him. But at the end of the day this disease will take him from us. I don’t like to be this blunt. It is hard to acknowledge it. But I felt like i have accidentally led people to believe he has beaten this, and while I would give anything for that to be the case, it isn’t. So we would appreciate all your prayers and good vibes moving forward. Pray that this disease doesn’t progress and he gets to be a kid for a while longer. Pray that he stays relatively unsymptomatic. Pray that he gets to stay. And please help raise awareness, because if science moves fast enough, you never know when they might find the thing that could save him.

Now after all that heaviness, I realize I never posted the video of Kase ringing the bell for completing his second round of radiation. So enjoy!!!

08/28/2025

🌟🌟 ONE YEAR 🌟🌟

It has officially been a whole year since our life turned upside down forever. One year, 2 brain surgeries, 13 weeks of radiation, tons of new medications, scans, and pokes. But most of all one year of Kase being the absolute strongest kid I know, one year of still making the most of everyday, and a year of still keeping a smile on his face (most days).

We simply cannot explain the last year of our lives in a way anyone can fully understand. It has been overwhelming and terrifying, but it has also been amazing and beautiful. Seeing the way everyone in our community has come together to support us is mindblowing. Learning to make the most of every single day, absolutely amazing. And seeing the way an 8, now 9 year old boy has handled this, there just aren’t words to properly explain it.

Kase is a part of a program thru the hospital called beads of courage. This program gives the kids a bead for each thing they have to go through. Every bead represents a specific thing they have gone through. For example, black beads are pokes of any kind, blood draw, iv start, finger pokes. Red beads are for when he receives blood products, specialty beads for bigger occasions. It is a fun way for Kase to be able to see how much he has overcome and a visual representation of his bravery. As of today Kase has 366 beads. Which is an insane amount of things for a one year time frame.

So to celebrate the year, and in the spirit of making the most of everyday. We played hooky today. We spent the day together as a family. We started the day with donuts, then we did lots of fishing, Kase caught 5 fish and Whitney caught 4! We watched a movie, played at the park and did a little photoshoot. It was an amazing day, and a day we just needed to be together.

08/06/2025

We are officially down to our last 6 radiation treatments!! Kase has still been handling it all really well! He gets tired a little easier but still has plenty of energy over all! His lab work has been looking great! His platelet count has even gone up so we haven’t had to get any transfusions in a couple months!

Not a ton has happened in the last few weeks. Kase was on an anti seizure medication after his last surgery and we tried to take him off of it but within a couple days his arm started not acting quite right again. So although we caught it early and it didn’t ever progress to another focal seizure his team restarted the medication and set us up with an appointment with neurology. We had that appointment last week and they have decided to keep him on the medication for a year and we can reassess at that point if we want to try to come off of it again. He handles the medication well with the only side effect being some impulse control issues, but he is starting to figure out how to manage that as well. We were also given a rescue medication in case he does have seizures while still on the medication. Neurology also is going to have him get an EEG done to get an idea of how prone he is to have seizures and if he has any triggers he should avoid, he will have that done on Monday.

Kase has also been experiencing some back pain and foot pain. The foot pain we think we are finally starting to figure out and have bought him some special orthopedic shoes which seem to be helping. The back pain seems to be getting better as well, slowly. He took a fall off his hover board in June and that may be all it is. But with the pain lingering he is going to have a spine MRI tomorrow evening to check and make sure it isn’t anything malicious.

Other than that we are just hanging in for our last week in Omaha! His final radiation was scheduled for August 14th, however, that happens to be the first day of school! So we have moved his last day to the 18th and we will come home on the 13th so the kids can enjoy the first couple days of school! We will then just drive back for his final dose and then he’s back home!

We have still been making the most of our summer and we appreciate all the wonderful ideas on activities! We have continued to make frequent trips to the zoo, and mommom and papa got to come down this weekend and see all their favorite animals too! We were gifted a day at the Loritzen gardens and it was absolutely amazing! We are so thankful!! We have also been to the kids museum, the air and space museum, Luminarium, Whitney got to do soccer camp, and we made it back to Kearney for a weekend where the kids great grandparents took them out for cruise night! We have managed to pack so much fun into this summer and we aren’t done yet! Thank you for all the thought and prayers!!

I almost forgot, Kase and Whitney also participated in a photo shoot last time we were here and they ended up in a magazine for an ad for the the Ronald McDonald House! They think that is pretty cool!

07/16/2025

We are now in week 3 here in Omaha. So far everything has been going really well! Kase has had no symptoms from radiation, his platelets have dropped some. Not bad enough to need a transfusion but we are keeping an eye on it with his weekly lab draw!

So far we have had a lot of zoo days! We have now officially seen everything there is to see there! So we are now looking for some recommendations to keep us busy while we are here! We have a zoo membership and a luminarium membership as well! So please send any other suggestions our way! As well as any favorite pools in the area!!

This last weekend Jack was able to come and spend the weekend with us. So we of course made sure daddy could see everything at the zoo as well! We even did the skyfari! Which surprisingly both the kids LOVED!!!

We really don’t have much new information and as long as everything continues to go well we should be able to enjoy our summer here in Omaha.

That being said, the kids are both missing their friends, if any of their friends would like to write them letters let me know and I can send you our mailing address while we are here! The kids also both have messenger kids, and as embarrassing as it is to admit, they both have cell phones as well (this has been important to keep in contact with everyone while we are separated often) but that is also an option for communication as well!!

As always thank you for all the thoughts and prayers everyone is continuing to send our way! ❤️

07/01/2025

*Update on Kase*

Kase is almost completely healed from surgery now! This last weekend we took a quick family vacation to South Dakota to see Mount Rushmore which is one of the things Kase had on his summer wish list! He also got to see mountains in the black hills, and we stayed in a camper during our vacation which are also things he had wanted to do this summer! We had an absolutely wonderful trip that we were able to pack so much fun into! Mount Rushmore, Crazy Horse, a gold mine, and Cosmos mystery area were all so much fun to experience! We were able to stay in a remote area outside Custer state park so every drive we took to and from locations were full of beautiful views and lots of wildlife! The kids are already asking if we can go back soon!

We are now back in Omaha for the next roughly 7 weeks. Kase’s pathology has come back as a recurrence and he started a second round of radiation yesterday. Jack is not able to stay with us for the whole trip this time around but has worked out a plan to be able to have long weekends so we can at least still have weekends together as a family!

Overall Kase is still doing really well considering everything. Obviously, this was not how we wanted to be spending our summer vacation. But he is still in good spirits. He is very upset about not getting to spend time at the pool with friends this year, and he will miss the first day of school this year, but we have agreed that there is lots of fun to be had in Omaha as well! He even got to bring his whole gaming computer with him so he is set!

We have an appointment with his oncology team next week again and will probably discuss more about the plan after radiation. He will not be restarting chemo, but we are instead looking at doing targeted therapy to target specific mutations within the tumor itself. He will not start this until after radiation is complete, so we still have some time to get everything all figured out and a plan in place. We haven’t gotten an official new MRI yet, he did have to have one for the planning stage of radiation, which did still show areas that were enhancing. But he was not completely healed from surgery and blood product can take time to reabsorb. So we still have no real answers as to if they got it all for sure or not. But we are hopeful that they did and the next MRI will show it resolved!

Enjoy some photos from our vacation and we will update when we know more!!

06/21/2025

Just more photos from the past year!!

06/21/2025

Happy happy birthday to our 9 year old boy!!!!!! This has been one heck of a year, something no child should ever have to go through. But our boy has done it with such strength. We love you so so very much Kase!! Here’s to another year of kicking butt!!!! 💛💛💛💛

06/10/2025

*Update on Kase*

First off I’d like to apologize for it taking so long for us to make an update post! We made it home and have just been trying to relax and heal and process as a family.

Kase has been doing great after surgery! Initially after surgery he had more pain than last time, however, that only lasted for about a day and he has been great since! His incision actually looks better than last surgery and is less tender! After surgery he did have some weakness in his right hand, which they expected given the location and swelling that he had. Since we have been home we have been working with him to make sure he is still using the hand and working it and he has regained his strength and coordination with it!! Over all he is just recovering from the surgery like a champ!!

The game plan moving forward is still up in the air. As of now we don’t have final pathology results. Our team has told us that it is most likely a recurrence of his original tumor, just in a slightly different location this time. We are still waiting on the final results to know for sure though.

We don’t know what our plan is as far as treatment moving forward. As of now we just know we will not be restarting chemo. It was too much for his body to handle, and if this is a recurrence then it wasn’t working anyways. We may have to do more radiation, still unsure on that as well. We will meet with our radiologist on Thursday to hear her opinion and her plan. We will then have a follow up with neurosurgery and oncology next Monday. Hopefully in the next couple weeks we will finally get answers and a game plan figured out.

One important bit of information from the surgery. The MRI after surgery did show one area in the surgical cavity that still enhanced with contrast. This could just be caused from some bleeding that occurred during surgery. However, there is also a chance that is could be residual tumor still left behind. Our surgeon does want to lean more towards it being blood, he said that from what he could visibly see during surgery it looked like a full resection again. However, the area that is enhancing is right along the motor strip and is the one area he couldn’t be as aggressive as he would have wanted to be without causing permanent defects in Kases’ movements. Unfortunately, we wont know for sure until his next MRI, which as of now has not been scheduled but I am hoping we get a date for that figured out at our follow-up as well.

So for now we are in possibly the worst chunk of time. The waiting….. waiting for results, waiting on a game plan, waiting to see if its actually even gone, and waiting to be cleared to do all the summer fun activities Kase has wanted to do so badly!! So as always, we appreciate all the thoughts and prayers and if you wouldn’t mind sending up a few extra that the scan is just showing blood we would appreciate it!! We will update when we know more!!!

05/28/2025

Kase made it through surgery and is in the room recovering! We wanted to make sure to let everyone know he is beginning the recovery stage! Thank you for all the thoughts and prayers that were sent our way! We will update with more information in the coming days as we begin to understand and have had some time to breathe! But as of now he is doing well!

05/27/2025

⭐️Update on Kase⭐️

This update is happening a lot faster than we would have liked, but here it is. Yesterday, Monday morning, Kase started showing seizure activity. We took him to our local ER and had him checked out. After consulting with our team in Omaha they decided that it was probably in fact focal motor seizures due to the pressure this new lesion and swelling is putting on his motor strip. He stayed alert and was able to continue talking through them so they do not believe it is anything more than that. He was started on an anti seizure medication and we were able to drive him ourselves to Omaha yesterday afternoon.

Since being in Omaha we have met with the resident who works with our neurosurgeon and our Oncologist. The general consensus is that this is most likely disease reoccurrence, but we wont know with certainty until we get it out and biopsied. So surgery is scheduled for Wednesday morning, they need special people and equipment to monitor him during surgery to help make sure they do not damage his motor strip and leave him with deficits. However, as with and surgery, there are always still risks of that happening. The location of this lesion is in a new location but they are close enough together that they should be able to reopen his previous surgery location to get to it, which will be great so they don’t have to open his skull in a new location.

The other news we have learned is that no matter what the outcome of biopsy we will be stopping Kase’s chemo treatments. If it is reoccurrence than the medications aren’t working anyways, and if it were to happen to be something else the medications are still just too harsh on his body and is putting him more at risk.

As of right now we do not know the exact next steps moving forward, we will have to have discussions with our team in the future when we know more. But they are working hard to find us the best options moving forward.

We would appreciate all the good thoughts and prayers for the next couple of days. This wasn’t an unexpected outcome but still happened more suddenly than we were expecting. We will update if we learn more, otherwise we will update when he has made it through surgery!!

05/24/2025

Update on Kase

It’s been a while since we have done an update. So we will start with just general life updates! Kase has been doing well overall since our last update. He finished tapering off his steroids and his symptoms cleared up! He was able to finish out the school year strong and was able to participate in field day and his field trip which were things he was really looking forward to! He and his sister were able to deliver some May Day baskets to friends! We were able to make it to the Minecraft movie in theaters!! Which has been a huge goal for him for a LONG time! And we finally got our garden planted and the corn that Kase wanted to plant is thriving!! Kase is very excited about school being out, and is ready for summer fun!

Now for the medical update. Kase had an appointment in Omaha today for a new MRI to check on the brain bleed he had and his weekly lab work. While his lab work today is actually finally showing improvement and that is great, the rest of the update isn’t what we were hoping for.

We were hoping that the MRI today would show that the bleed had resolved itself and there was nothing of concern hiding under it. Unfortunately, the scan today does look worse. His scans showed what they are referring to as a “cystic cavity with hemorrhagic lesion”. Basically where the bleed was now has a pocket around it. The bleeding has resolved itself enough to be able to see that there is a lesion about the size of a pea in the cavity. We don’t know what the lesion is by just looking at the scans, our neurosurgeon was out of the office today so he will look over that scan over the weekend and will get back to us next week with his opinion of how to move forward. Our team that we met with today does feel there is a good possibility that this is disease recurrence, and feels that we should prepare to have another surgery done. Obviously this is not the news we were hoping for at all, but the positive is that as of now Kase is having no clinical symptoms of any of this! By looking at him you wouldn’t have any idea, which I think is why the scan was such a shock. He seems ok, he seems better than his last scan even.

All that being said, the bottom line is…. We just don’t know. We are still in limbo, still not sure exactly what we are looking at, still not sure exactly what our next steps are, still just waiting. While our team is leaning in the direction of this being disease, it is still possible it’s nothing to worry about. So for now, we watch closely for any symptoms, and we wait to hear more from our team. This is going to be a very long weekend, but we should know more and have a game plan next week! So for now, as always we will take all the positive thoughts and prayers. And we will update when we know more!

Enjoy some photos from the last few weeks!

04/18/2025

⭐️Update on Kase⭐️

We still don’t actually know much. We repeated MRI yesterday morning, the results were exactly the same as the original MRI. The steroids haven’t shrunk anything but it also didn’t get any bigger! They still aren’t sure what caused the bleed or what may be hiding under it. The doctors all agree that the risks outweigh the benefit of doing surgery right now with the uncertainty of if it is even warrented. So we were sent home with steroids to taper off over the next few weeks and will do another MRI at the end of May. He is still having some troubles with his right arm and is definitely having some mood swings from the steroids. But over all he is still doing good, the only issue he is having is his arm. He will now have to keep his platelet levels higher so we will be doing lab checks twice a week now to make sure they stay where they need to stay, and the new medicine he started in the hospital to help his white counts will continue at home as well. Unfortunately, these are shots that he will have to have everyday that Jack and I will have to give him. This will definitely be a new challenge for everyone involved. Neurosurgery also stopped us in the hallway on our way out of the hospital and briefly mentioned a possible appointment with them in a week or two to follow up.

So basically, we don’t know for sure what caused it, we don’t know for sure if it will go away, and we don’t know for sure what our next steps are going to be. All we know is that we have to watch him closely for any worsening symptoms or new symptoms. Surgery is still an option on the table, depending on how he does over the next few weeks and what the next MRI shows. We appreciate them being careful and not wanting to cause more damage by doing surgery right now,, but also having the unknown looming over us will be hard. Knowing that the tumor could be back is going to be very hard to live with. So we will take all the prayers and positive thoughts you can send our way that his symptoms start to improve and his next MRI shows improvement as well!!

Kase’s Krew

09/12/2025

08/28/2025

08/06/2025

07/16/2025

07/01/2025

06/21/2025

06/21/2025

06/10/2025

05/28/2025

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05/24/2025

04/18/2025

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