Friends, it has been too long since my last update so I will try and be better in the future. Either way, it has been an interesting start to the year medical wise. The drug trial I mentioned last update was not good at all. It was ineffective and made me feel pretty horrible. I have been off it for a few months now but overall, my body was not on board. The trial is actually already closed.

Since then, I did some radiation treatments to zap a few spots and started back on chemo. Just one drug (Doxel) that I receive once every 28 days. So far so good. I will get scans done in a few weeks to see effectiveness and go from there. But overall, I feel a lot better now than a few months ago. That trial was just not good for me all around.

For family, it is always crazy. Sports out of our backside. Lennon is doing softball and soccer. Wells is doing soccer and T-ball. So a lot of practices during the week and weekends are almost always booked up. All 3 kids had a birthday early this year (Ever – 10, Lennon – 9, Wells – 5) and we had a good Easter! Wells is getting ready for Kindergarten and Ever is dominating her MAP testing.

Talk to everyone soon and as always… thank you for your support. We hope to pay it forward later in our life.

Happy holidays everyone! The DeMage house is active with decorating (Amy goes overboard more and more each year) present buying, and kids activities.

Medical wise, I have been taken off of Tipsovo to hopefully begin the drug trial at KU. That finally got approval and we are going to start that ASAP. For those nerd readers that want to know the details, it is called Cornerstone CCS618 Study – Protocol V7.0. You can read more HERE. But from our understanding, it is very targeted to Clear Cell Sarcoma and doesn’t have tons of side effects. The only “problem” is that you have to get the infusion for 5 days straight every 28 days. But, if it works, it will be well worth the time sitting in the chair.

Besides that, Wells loves his school and so do the girls. Lennon started soccer and basketball (yes crazy) and Ever is taking a horse riding break to start a Bath Bomb company (Everbombs). She wants everyone to know they will be available for this Christmas.

We hope everyone has a great Thanksgiving, Christmas and you get to relax and enjoy your family and friends!

Well, things have been so busy lately that I have forgot to update this again. Sorry about those that read in hopes to get updates on me, my life, my family, my sports teams, my kids, my awesome life and everything in-between.

The Tipsovo has been very good. It is working and there are not many side effects with is great. The problem that has risen in the past month is that this medication can effect a persons heart. EKG’s are showing elevated levels of something scientific so I have had to go on and off it. And recently the doctors have said that we need to take a break off of it.

So what is next you ask? We don’t really know yet. It will most likely be some form of chemo again for a while. There is another drug trial KU is getting set up but it will probably be a couple months until that is ready. I will be going to MD Anderson in a couple weeks to do scans, see where things are at and figure out what is next. I promise to update this blog when I find out.

Besides all that stupid medical stuff, life is great. Kids are busy. Wells finished up at his current school and will be starting a new preschool in a couple weeks. Ever finished her horse riding classes and will be going in 4th grade. Lennon finished her competitive softball season and going into the 3rd grade. Amy got a new job and is looking like a professional model more and more each day.

We went to Minnesota for a nice family vacation (that mall is awesome) and rode roller coasters. Medicine lodge for Kyle’s wedding. Wells Started soccer. And the Chiefs are getting started towards a super bowl so get ready.

Talk to you all soon! -BJ

Sorry friends, it has been a while since we updated the site. Holidays are crazy and so are 3 children. But we are happy to say we are alive and doing awesome.

For treatments, we ended up doing radiation on a few more spots. One in the GI and the other in the liver area. Both were successful and those spots are stable and smaller. I had a rough time near the end of those and ended up in the emergency room for a few days because of pain. But they modified my medication and put in a pain block and I have felt really good since. Now I am on a chemotherapy pill called Tipsovo. It is a targeted pill that works on certain mutations (that I have). We just had scans after being on it since mid December and things are positive. Most spots are stable are smaller with a few being slightly bigger. We will continue on this treatment for another couple months with the hope that this med works really well on all spots in the future.

For family, man it has been crazy. Santa was good to us all. I don’t know if I would have personally put Amy on the nice list, but he did and I can accept that. We also just went on a family vacation to southern California where we visited Disneyland, LegoLand and explored LA and San Diego. It was a fun trip (I never need to go back to LA in my life) and the kids loved it all. We are not talking Chiefs football for a couple more months to get over the earlier than expected ending to the season. Maybe MLB can get their stuff together and have baseball start on time. Probably not.

As always, thank you for everything. Sincerely BJ

Well it has been a crazy few months. The plan was to get a chemo break and at the same time try another treatment option. So my last chemo was May 17th and I recently finished a radiation treatment on my neck. It only took a couple weeks for 5 treatments but if you haven’t seen the crazy mask and table you get strapped down to, check out some pics below… It is Amy’s nightmare 🙂 Overall, received scans this week and everything looks fine, the tumor in the neck is actually smaller from the radiation which is great. The next step is to start a new drug trial. After a lot of genetic testing on the actual tumors, they have found a common driving mutation and this new drug will actually target that exact mutation that I have. So all doctors, nurses, wives, kids and onlookers are pretty excited about the possibilities. Hopefully it will be effective! I will start this Aug 4th and should know within a few months of starting. We are looking into Angel Flights to help with the increased required travel these next couple months, but if you have any ideas, let us know.

Besides that, we did a family vacation to Oregon and the northwest. We stayed in Cannon Beach, then Newport, the Redwood National Forest and then Crater Lake. A great trip and a lot of driving. Was it a little colder than we thought? Yes. But it was a great time. The 4th of July was awesome as always and Lennon dominated in softball this summer!

More scans at MD Anderson and everything is showing as stable or smaller so that is good. We are going to look into some treatment options starting in a couple months to see if we can find a long term treatment without the bigger side effects. We will see.

Besides that, it was a crazy couple months. Amy and I celebrated our 10 year wedding anniversary. All 3 kids had a birthday… Ever is 8, Lennon is 7 and Wells is 3. Throw in Valentines day and a disappointing Super Bowl and we had a busy couple months.

Just had some scans done at MD Anderson and they look good. Everything is either stable or smaller. So we will continue on chemo treatments for another couple rounds and check again. With side effects being minimal at this time, this is good.

Besides that, Christmas was great, the kids got way more than they needed (our fault). Overall, just trying to figure out where to put all of these new toys and playing in a little snow. And good news is that Lee’s Summit School Board got their heads out of their backsides and let the kids go back to in person school so that has been great! And the new puppy Delta is growing and still a pain in the butt 🙂

Go chiefs! Let’s hope they can bring home another championship!

BJ has been on chemo since July and luckily the scans are showing good results… All tumors have shrunk since last scans and the chemo is doing its job. Luckily, the side effects have not been crazy this time around. Appetite is great (he might actually be gaining weight), swelling is minimal (except for previously mentioned mid-section) and not much pain. After our recent meeting, the doctors decided to keep him on chemo for at least another 2 rounds so we will scan again early next year and see what options are available at that point.

Besides that, life has been good. Amy and BJ went on a trip to New Hampshire and Vermont to see the fall countryside. BJ turned 40. Kids are losing teeth at a fast rate, BJ went fishing in Arkansas, Halloween was fun (we won out neighborhood family costume contest) and the Chiefs look really good. We also got a new family dog… everyone say hi to Delta (she chews everything). Overall… No complaints from us!

We just got back from MD Anderson in Houston, and unfortunately the scans were not where we wanted. Still unsure if the immunotherapy is working but we are going to go back to Chemo to be cautious. From our understanding, immunotherapy can actually help chemo work better so we will see in a couple months. As always the goal will be to stop any growth and shrink the tumors, which it has every time in the past. It will be about the same treatment plan as last time so hopefully the side effects will be minimal and manageable. Thank you for all of your support as always.

So this quarantine… not too fun. We have just been relaxing at home. We did have some fun vacations planned, like most families, but have had to cancel those and make our own fun at home 🙂 At this point, all we can ask for is that the girls have school in the fall…. and football… football would be great. But school in the fall… we all need that in our life.

Besides that, we have done a few small family things… strawberry picking, rented a pontoon at Blue Springs lake (no, I can’t wake board like back in the day) , Lennon started T-ball and got to blow up some stuff on the 4th. So it hasn’t been all bad.

We are officially on to immunotherapy treatment (opdivo). The first dose was yesterday and so far so good. Very nice that there are not many crazy side effects like chemo. I can drive myself to appointments, no nausea, etc… We will probably scan in 2-3 months to see where we are at. This can take a while to see results so cross your fingers. No longer taking Sutent at this point, just the opdivo.

And wow, the world has changed a little since the last post… We did get in our Disney trip in February. All 4 parks in 5 days, very exhausting. I met one of childhood idols in Pluto, and being how famous he is, I really think he is still a down to earth dog.

I was also able to hit up Surprise Arizona to see the royals for a few games right after Disney. A couple weeks after that, We have been on lockdown and No DeMage has changed their underwear. Just kidding… just Amy.The rest of us are civilized.

Happy 2020 everyone!

Just did some scans and they showed tumors are still shrinking, so that is great! Hopefully it is this new medication doing it’s job. We are going to give it another couple months to see how things progress and how I handle the medication. But so far so good, not too many side effects to speak of. More than likely we will add immunotherapy in the near future, but we will see.

Besides that, Christmas was amazing. Santa visited and everyone must have been on the “good” list (including Amy which was a little surprise) because we all receive some great stuff.

And we are making some fun plans for this year. In late Feb we are going to Disney (which is probably more exhausting to plan than actually go), we are going to drive to gulf shores once the kids get out of school, maybe hit up Minnesota? The northeast? Who knows.

Oh yeah… Let’s go chiefs!!!!

Hello all, it has been a while! Things are good. A few weeks ago I went on a break from the chemo. The good news is that it continues to work, tumors are shrinking and food tastes like crap. However, since we new some of the side effects from last year, we able to schedule things to where it was not as harsh. So that was good.

Either way, we are taking a break and have started a new treatment option. I will be on a daily medication called Sutent. Now I am no scientist but the internet tells me it is “a targeted therapy and is a receptor protein-tyrosine kinase inhibitora.” What that means I don’t really know… but basically it is a targeted chemo drug. From what I am told we will pair it with immunotherapy in a couple months. The first goal is to stabilize and stop growth and hopefully it will actually reduce the tumors. Fingers crossed 🙂

Besides that, we have been busy. Halloween was fun. We had Mary Poppins, a chimney sweep, a penguin and two frogs (not Mary Poppins related). Thanksgiving was great. As usual the best thing on the table is stuffing, followed by rolls and green bean casserole. The worst is obviously cranberry sauce.

Alright friends, just got some tests done after the first couple rounds of chemo and everything came back great. All tumors are shrinking as before. The plan is to do more rounds through mid November and continue kicking ass. Since we knew what the side effects were, we have been able to control those and I am feeling a lot better this time around. Depending on a few things, we will be looking at giving immunotherapy a roll here in the near future.

Besides that, life moves on. Fall is coming, Halloween costumes have been ordered and Chiefs are in full swing! 

Well, it appears that AMG 337 is not going to be the answer. Unfortunately tests have shown that the drug did not work and tumors have started growing again. So it will be back to chemo. The goal is to get growth under control and hopefully shrinking with the same drugs as before. After that, both doctors are already looking into immunotherapy as the next step to find the right way to cure this thing. It will be a tough fall (like last year) but are still very optimistic that the chemo will continue to work like last year and immunotherapy is waiting in the wings to kick ass. Since we know side effects and how my body will react, we can get a head start to alleviate side effects. 

So besides that we have been busy…. first of… GO CHIEFS! Should be a fun a year. We already went to training camp for a day, a preseason game and have plans to go to the home opener as well.

Colorado was amazing.

My dad golf tournament was fun as usual (The Big Dog Wack Off Tournament… You should play next year)

Kiddos started school.

And Amy is one year older and twice as beautiful 🙂

Happy 4th of July everyone! Hopefully you still have all of your fingers! Just a reminder that July is Sarcoma Awareness Month.

If interested, you can get involved HERE.

All right friends, I have started the new drug trial. So far so good…. Not too many side effects. Just some head aches (caffeine pills take care of those) and some fatigue (naps take care of that). I will be traveling to Houston in 15 days, 30 days and 60 days. At that point we will find out how effective they are.

Besides that we had a great time in Michigan.

Here was our view (my awesome cousin let us stay at their lake house on Lake Michigan).

We stumbled on, according to Amy… the scariest putt putt golf course on the planet. Yes that is an empty pool.

And also found our way to see this mural at a consistently subpar college with an overrated football team (just kidding, ND is alright I guess 🙂

We saw 45 different state license plates (damn you Alabama, Hawaii, Idaho, Wyoming and New Hampshire) and traveled 2040 miles.

Just got back from MD Anderson and the scans show some more activity in the known trouble spots (minus the big one in the liver, that appears to be dead as the royals season from the ablation). Nothing new which is good. The REALLY GOOD NEWS is that a drug trial has opened up for clear cell sarcoma. Timing couldn’t be more perfect because this is the drug both doctors have been watching in hopes I could qualify for and get on it. The drug is in Phase 2 and is named AMG 337. The good news is that phase 1 showed positive results. The other good news is that this drug directly targets the mutation that is found in clear cell sarcoma (which is rare and they don’t do many trials on). I will have to travel a little more than normal because you have to get the drug in person and get tested in Houston, but that is alright. It is just a daily pill so hopefully side effects will not be that bad. I will be getting started in about 2 weeks. So please keep you fingers crossed that this drug stops or even shrinks the tumors. Say it with me… AMG 337! AMG 337! AMG 337!… that was weird but you get the point.

Besides that. as previously mentioned, the royals are rebuilding so don’t watch much as of now. I am getting pumped for Chiefs stuff (i think they made some great moves this offseason with the draft and free agents). And we will be going on a couple vacations this summer to Michigan and Colorado. Let us know if you know any good places to go with 3 kids, a tired mom and a dad that will be on a drug trial experiencing random side effects.

Got some scans done a week or so back and all tumors were stable and not growing… so that is good 🙂 Doctors are trying to figure out the best next step when it comes to my next treatment, immunotherapy, or trial. I will be having a microwave ablation of the liver tumor on April 18th which will hopefully kill that one completely. Cross your fingers 🙂

Besides that, hopefully the Royals keep us entertained this summer. Who knows… I am an optimistic sports fan.

Just got back from MD Anderson and everything continues to look good. Scans still show tumors are shrinking and positive vibes are swirling around all the doctors (and us). The doctors recommended to take a break from chemo for the next few weeks to help BJ’s body recover a little bit from these crazy side effects. We are also meeting with surgeons this next month to discuss if surgery is a good option in March.

Again, thank you to everyone who is supporting us through this time. Our family and friends are just amazing 🙂

Merry Christmas everyone!

We wanted to say thank you very much to everyone who has helped us out this year.

First off… the amazing people at Fight Dirty and Wally’s Grill and Drafthouse… what a fun event you threw for us the other night. Our kids loved Santa, the food was great, the raffle was super fun and everyone was extremely generous. 

Secondly… thank you from the bottom of our hearts for everyone who has helped our family in all the ways we are having trouble keeping track of this year. From house cleaning, landscaping, babysitting, meals, GoFundMe donations, gift cards and everything else. We are humbled by the generosity of our family, friends and complete strangers. People are amazing… and you all have reminded us of that fact everyday. Thank you for the hope, smiles, tears and joy.

We are looking forward to moving into 2019 where we are positive treatments will be effective, good times will be had, Kansas City sports teams will dominate and the sun will shine bright for us all!

There is a great organization here in Lee’s Summit called Fight Dirty and they are generously throwing a fund raiser for us. Equally as awesome is Wally’s Grill & Drafthouse where it will be held. Here is the flyer and if you get a chance, come on by. We will be there eating great food. I think Santa will be there as well 🙂

Tests revealed the treatments continue to work! All tumors are still shrinking. We will continue the current treatment plan but it is changing to every 4 weeks instead of every 3 weeks to give relief with side effects. So we have 2 cycles of chemo and head back to Houston for testing early January.

Besides that we will pray the Chiefs continue to play as they currently are… MU Tigers have essentially embarrassed themselves this season… and then rebounded a little bit… so standard Tiger football season.

With Thanksgiving coming up, we will start dreaming of delicious food that hopefully tastes delicious. FYI… according to BJ, the best 3 foods are stuffing, green bean casserole and gravy. The 3 worst are cranberry sauce, turkey and potatoes. Pie is not included in the list because it is clearly #1. If you disagree with any of this, BJ invites you over to fight him.

-BJ

Chemo received on:
Thurs 9/27 chemo round three, dose one
Thurs 10/4 chemo round three, dose two
Thurs 10/25 chemo round four, dose one
Thurs 11/1 chemo round four, dose two

Tests revealed all tumors are shrinking! We will continue current treatment plan, root on the Chiefs, and hope the MU tigers don’t embarrass themselves this season.

-BJ

Chemo received on:
Thurs 8/16 chemo round one, dose one
Thurs 8/23 chemo round one, dose two
Thurs 9/6 chemo round two, dose one
Thurs 9/13 chemo round two, dose two