Jason's Courageous Battle

Jason Update: 06-01-2021
This is a long read....
Hello friends, prayer warriors and all of you fellow Jason supporters!
It has been awhile since we have updated you all. A couple of months ago everything seemed like it was going very well and there really wasn’t much to update. But just shy of a month ago, things started to change. Below are some of the events that Jason has been dealing with.
May 6th, Jason’s blood work showed his calcium level was elevated. He became nauseous, dehydrated and kidneys were stressed. Dr had him check in to hospital for fluids and medication to get the calcium level down. He had a CT scan while he was there to help determine if high calcium might be due to medication or a change in his cancer. Good news, no cancer in the bones. Due to his lowered kidney function they could not use a contrast dye in the CT. So no updates on how his cancer was doing then.
May 14th was a follow up appointment with his doctor.
Calcium level was good and most of his blood work numbers good, kidney function back to normal. Unfortunately, his liver function was still down some which was concerning to his doc as to how well the Pemigatinib was actually working. You can only imagine that this was
emotional for Jason and Becky... sometimes the fear/worry just takes hold for a while.
May 26th
Scan results....
Dr said the medication is NOT working (it was for a bit). They are considering a couple other options. (A phase 1 trial drug or maybe a different chemo.) Needless to say this is disappointing. His case will be reviewed again by the “OHSU team of doctors” Wednesday, June 2nd.
Additionally, Jason tested positive for Covid from a test he needed for his drain replacement. (Becky and Collin tested positive too.) Thankfully their symptoms are mild..
May 29th
11:00am Jason went to the ER. He was having some issues with his bladder/kidneys. His stomach was distended. They ordered lab work and a CT scan.
2:20pm… His labs came back. His kidney function was fine but his liver function is way down. His bilirubin is 13.9 up from 4 at his last blood draw.
4:00pm
Jason had a 2mm kidney stone!! They kept him overnight to help with pain management.
9:00pm
A call from Jason: He sounded good and said he feels much better than this morning. Drs believed (95% chance) he will pass the stone on his own and not need medical intervention. Out of an abundance of caution, he didn’t have anything to eat or drink after midnight in case he should need a procedure for the kidney stone and there was consideration of replacing his drain.
May 30th
Becky text us to say Jason is having his bile drain replaced at 10:30am. It was vital that this drain works well or he would not be eligible for further cancer treatment options….
Drs believe the kidney stone has passed and Jason was feeling “MUCH” better.
1pm Jason text us…
“Back in my room recovering, still pretty groggy.”
6:00pm
Jason called...He still will talk directly with the doctor who placed his drain, but the nurse in that procedure room said the “procedure went well.” His bilirubin count was down some, his kidney function is good. These are all praises!!!
On another note….He had some pain in his low back. They were not clear if it is from his kidney stone passing, residual pain from drain procedure, lack of pain medication, or possibly an infection. At any rate they gave him a round of antibiotics and will get his pain under control. So one more night in the hospital.
May 31st..7:30am
Good news, bilirubin is down even further from yesterday. It had been 13.9 and now it is 9.6. The doctor came in to say he can go home today…. So very thankful.
June 1st.
His case will be reviewed again by the “OHSU team of doctors” tomorrow to review what options they can try next and where Jason will move forward.
Thank you all for the support and prayers! We need you all!

Jason Update: 4/13/21
Thank you so to all that are asking how Jason is doing.... Really not much to update as his treatments will continue to be the same for the foreseeable future. The last couple weeks he has had some hip joint pain. He has been heating the area and using some anti inflammatory medication. He has a doctors appointment soon for blood work and he will have a chance to ask the doctor about his hip. Today Jason has a scheduled eye exam. (The exam is due to possible side effects that Pemigatinib have on the eyes.) Wednesday Jason will begin his 5th cycle of his cancer medication. Thanks again for all the love, prayer and support!

March 26th, 2021
~Jason Update~
It was a big day Yesterday....Jason and Becky became grandparents. Their daughter delivered a baby boy. What a blessing! Mom and baby are doing very well. We have a picture from today of Jason in the hospital and a picture of their daughter at the same hospital ready to deliver her little one today.

Jason’s procedure went well (drain needs replacing every two months.) He was home by early afternoon and even went out for a walk. He said he has some discomfort at the site of the procedure but expects that to get better in a couple of days. On Wednesday Jason started his 4th cycle of Pemigatinib, met his new oncologist and had bloodwork. Thankfully his test results look good. His next appointment will be in 3 weeks (instead of 2) and his next scan will be in May when they next need to replace his drain. So everything to report right now is positive. There is still a long road ahead and we really don't know what the long term will bring. We are thankful for all of you that send prayers and support our way. Please keep them coming! We will try and update every couple of weeks or so, that seems to be when we get the new news.

Jason Update: 03/04/2021
Great news! Jason's scan results: Scan shows he is “disease stable” and, in fact, cancer appears to have slightly regressed (less of it)! After just 2 treatment cycles his gene therapy treatments are working! This is the best news we could have gotten!! We are so very thankful. Thank you all for the thoughts and prayers! Praise the Lord!

Jason update 2/19/21
Bloodwork drawn yesterday looks good. He seems to be having very few side effects from the new drug. Jason is eating more calorie rich foods and his weight loss has halted at the moment. There are “more good days” as far as how he feels. So thankful they did not lose power during our last weeks snow storm!
“Less labored” is what Jason told us about when he moves around the house. Getting himself up out of his chair is easier as is getting his own drinks and taking care of his needs. His biliary drain seems to be less leaky. Walking has been part of his daily routine when he feels up to it.
Prayer requests...
1) Positive scan results on March 4th.
2) Their family to find just the right rental home to move to that is close to their current home. Their current rental agreement is coming to an end and there are very few houses available.
3. And of course that the miracle will happen and the cancer will disappear.
Thanks you all again for the continues support and prayer. We could not get through this without each and every one of you.

Sunday, January 31, 2021
Mitch and I visited Jason today. We spent a couple hours with him talking and enjoying each other’s company. We talked a lot about TV shows and movies. Jason has musical abilities... guitar, drums, keyboard. He never took any lessons but instead learned to play by ear. He and Mitch have played together in past years, but it’s been quite a while ago. It’s nice to know that on the days Jason feels well enough, he is setting up a keyboard area so he can play again.
Monday, February 8, 2021
Last Thursday Jason saw his oncologist for a check up and blood draw.... Becky said the doctor “liked his numbers except for his weight, he’s losing too much. He needs to eat MORE!!” Jason hasn’t had much of an appetite but we are hoping as time goes on that will change and he can maintain his weight (not lose more.)

As I said, In the last month, Jason hasn’t really felt much like eating. One thing we did was to start making homemade yogurt. It is lactose free and full of good probiotics for the belly. We made Jason some banana almond bread today, a recipe he shared with me. Hope he enjoys it.

We checked in with Jason yesterday. The drain to the outside of his belly continues to be “leaky”.... it’s annoying and requires dressing changes a couple times a day.

Besides weekly doctor visit, Jason’s next scan to check on the cancer will be March 4th. We thank you for praying with us that this next scan will find his cancer receding.

Saturday, January 16, 2021
Jason has been home from the hospital since 1/12 Tuesday evening. He is feeling so much better each day that passes. His gut continues to heal and feel better, his body is less sore and his heart is happy to be surrounded by family and so much love all around.

Jason had his appointment with his oncologist yesterday(1/15). Besides checking on his bloodwork and well being, his oncologist talked with Jason about the genetic testing conducted on a biopsy of Jason’s cancer in early December. Results, just in, show a genetic alteration of the fibroblast growth factor receptor (FGFR2). GOOD NEWS! There is a drug that has recently been approved by FDA that targets this alteration to slow, stop, and hopefully reverse his specific cancer. The targeted therapy, Pemigatinib, is a pill taken once a day for 14 days followed by a 7 day break. Side effects in many ways are less than chemo with just a few small things to watch for like vision changes or hair loss. What an amazing blessing to now have this option as chemo isn’t showing any signs of retreating the cancer and Jason is beginning to have more complications. He will still be using very specific herbs, supplements and alternative medications as part of his treatment. Jason, his team of doctors and his family support team view this as a wonderful development and we are glad to share this with you. He will begin the new medication next week and we will keep you all posted.


LaDonna


Jason Update: 1/8/21
After a couple of hard days for Jason there is good news this morning. His white blood cell count is nearly back to normal and his bilirubin number is now down to 2.4 from a high of 4.2 eleven days ago.


Fluids, antibiotics, resting his intestines seems to be working well. They “capped off” the NG tube for now, and are trying just liquids for then next 6 hours. If that goes well (no nausea, discomfort) then they will offer him soft foods for 6 hours. It is possible they could remove NG tube late today.


Jason will get up and move around more today with the hopes of increasing the movement in his gut. CT scan soon to see how his blood clot in his lung and how his liver are doing. Dr will discuss the bile “drain” with Jason later today to see if a change to that regimen is needed.


3pm.... Jason is tolerating the clear liquids (no nausea). His CT scan results are the same as last week. Thanks for your prayers and good wishes!
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Jason Update: Monday, January 4th
Good news! Jason will be able to continue his treatment! The doctors were able to successfully place a drain in Jason’s liver last Tuesday. He was released from the hospital on Wednesday and has been recovering at home this last week. The drain is working well and let’s the bile go directly into the small intestine. In fact, at his doctors appointment this morning, his bilirubin had gone down so he can have his third (of 6) chemo infusions today. His next chemo infusion is scheduled for January 11th. On Friday Jan 22nd Jason will check back in to the hospital for a procedure to see how the drain is doing and make any adjustments as needed. Go fund me page and updates below. Thank you all for the continued support and prayers!

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Jason had his second chemo today. Becky was able to be with him for his doctor appointment and bloodwork, but not for the chemo treatment.
Today’s blood work took longer than last week. Tests showed he needed a reduction of 20% of one of his chemo drugs (pretty common)and that he may need an increase in blood thinners. Jason said “nothing really to worry about.” He was going to relax this evening and is hoping for a good nights sleep. They give long lasting anti nausea medication and steroids with his treatment to ward off some of the side effects.

Last week it wasn’t until Sunday morning that Jason started feeling nauseous and had some serious body aches. He just couldn’t find a comfortable place to sit or lay. Thankfully those symptoms eased some as the week went on.

Our prayer continues to be that Jason can tolerate the treatments without too much discomfort and the cancer responds to the chemo. Thank you all for your love and good wishes, thoughts and prayers. We appreciate them.


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A few months ago, Jason went in for a leg pain diagnosis. What was found was blood clots. He was put on blood thinners and other meds that helped some but eventually he got the clots in both legs. It took 4 months of testing and pulling at straws to get to the point where we are today. A biopsy was conducted on Monday November 16th. Yesterday the 19th our worst fears were revealed. And Jason was diagnosed with a very rare and aggressive cancer. Intrahepatic Cholangiocarcinoma Bile duct cancer of the liver. There is a 25-50% cure rate. 6 months to live without treatment. It is not likely that Jason’s insurance would cover any critical aspects of his longer-term care, including many alternative and integrative therapies and experimental trials.

Jason is married with 5 kids and a dog. He works out of his home selling on ebay, etsy and other online sources. To make matters worse, the family has to move at the end of January because the double extended lease is up. With the course of action the doctors need him to take, the family(my son) will loose all source of income and no place to live let alone his work and inventory moving.
We hope to help the entire family but mostly Jason and a possible recovery by fund-raising for medical assistance/housing, and make sure that Jason’s health and recovery is the primary focus.

Jason and his family are so appreciative of the already numerous outpourings of support and love they have received already, and look forward to sharing hopeful and good news with you all!