Tuesday, July 22, 2025

 May 17th, 2025 - Home. 

Friends of the Post: 

This is Kevin - writing on behalf of Sheryl, my wife and partner for the last 34 years.  On May 17th, Sheryl went home to be with Jesus - her fight with cancer over.  She was surrounded by family at the home and died peacefully that morning. Our new normal is taking some difficult steps without the core center of our family.  

To me, Sheryl was everything I worked for and lived for - making her happy and fulfilled was my lifetime goal.  I am assured by friends and family that I did that in every sense of the word.  I loved doing it - even in hard times - and am finding comfort in the marvelous way she shaped our world, leaving behind a platoon of people to care for me with kids and grandkids, and a wonderful mother-in-law and brother-in-law.  She left each of us personal letters telling us what she loved about us as individuals and encouraging us to live for Jesus and care for each other and others in the world who are often overlooked. 

Her funeral service is available on YouTube (search Sheryl Holle Funeral through Northside Christian Church).  Sheryl had her closest friends read Scripture, our children spoke, and the sermon message was as she told our lead minister, Wayne, to preach it. She left a note for everyone who came to the service titled "Jesus Follower."  Sheryl was that in every sense of the word and her faith was at the forefront as her final weeks and days came.  What a testimony for all of us who were near her - especially the last two years that she battled terminal cancer.  

In her memory - we have established a fundsite through the American Cancer Society (Long Walk for Sheryl) to fight bile duct cancer - as of this date we have surpassed $10,000 - on the way towards a goal of $18,600.  Join us in the fight - help us honor her.  

https://raiseyourway.donordrive.com/campaigns/Long-Walk-for-Sheryl

We are all struggling in different ways with grief - which I have learned (short journey so far) is not linear.  I see her face break into a smile, see her eyes light up, and still hear her voice calling from time to time. She is not here. She is in heaven in the fullness of God's glory - my plan is to see her there.  The night she died, I dreamed of that reunion, with her peaking around the a gate post looking for me with her green eyes and mischievous smile - she wants you there too. Until then, beautiful lady. 

Kevin 


Sunday, January 19, 2025

Things are Changing

 Well, another 4 months have passed since my last update. On October 27, Greg married Taylor in a beautiful outdoor ceremony outlooking the Ozark Mountains.



It was a fun day and night with lots of smiles and a few tears. We had so many great friends and family there to show their support. I had a sweet mother/son dance with my sweet little boy from China. It's hard to believe he has only been in our family for a little over 14 years. He is one amazing guy, and Taylor is smart, sweet and beautiful. They both desire to love and serve Jesus in the same way. I know they will do great things!

We had a great Thanksgiving with everyone at our house including 7 grandkids running around playing. Miranda and Gavin are having another sweet baby in June. It's a girl! Avery will get a little sister and have another girl to face those 6 brothers/cousins with.

In December I had another stent exchange on the 2nd. It was only partly successful. I usually have 2 stents removed, and 2 stents replaced. The doctor was only able to place one in the right bile duct. The left side was too closed off with tumor. So I left for home with instructions to check back in soon with bloodwork and they would attempt the procedure again with a more specialized instrument that wasn't available at the location I had it done the first time. In less than 4 days I became very sick and jaundiced from my liver not being able to function. On the 7th I was admitted to Barnes in St. Louis and had a scan to see if they though the procedure would work, and then was able to have the procedure on the 9th. They were able to place 2 stents, but it took me awhile to recover from my bilirubin being so high. I was dismissed from the hospital on the 11th.

On the 16th, Kevin headed back to St. Louis with me for my usual 3 month scans and next day appointment with my oncologist. I was expecting my scans to show some not great things based on the scan I had in the hospital. At my oncology appointment, my doctor came in and I knew it wasn't great news. He said "disease progression" and "no treatment options available". I had been done with chemo for awhile, so the second part wasn't as hard to take. We talked about future expectations and what that might look like. Hospice was discussed, and what I could and couldn't do if I chose that path. I could travel, but I couldn't have stents replaced. I decided to keep going with the stents until they couldn't help anymore, and then go ahead and make a plan with hospice. My doctor told me that most people with my diagnosis don't survive 11 months past diagnosis. I knew this, and I am so grateful the the extra year I have been given so far. I won't be going back to see him or my Springfield oncologist. I will now just be followed by the Palliative Care team that I have been seeing since my diagnosis.

My cancer has spread within my abdomen and the large tumor in my liver hasn't really grown much in size, but appears to be invading the inside of my liver more. This is causing my bilirubin to stay above normal and giving me a little more pain. So I am trying to be grateful for each day I have and make it a point to do things I want to get done.

We had a great Christmas, I was feeling better and had taken care of presents and all the wrapping with Kevin's help way ahead of schedule this year. It was like I knew I wouldn't feel like handling it all close to Christmas. We had everyone at our house again and it was truly just a good day with everyone together.

I decided to make some travel plans. Kevin and I planned to go out to Las Vegas to stay with our friends Brad and Melody and they made us an itinerary to go to Zion National Park and the Grand Canyon. Unfortunately Kevin was sick the few days before we were supposed to leave so we canceled those plans. I am leaving on the 23rd to go to Poipu, Kauai with my best friend Kim for 10 nights. Kevin and I went there 21 years ago and I have been saying ever since that I wanted to go back. Kevin isn't a fan of long flights, water or the beach, so I decided to bring Kim along for some much needed girl time. Kevin also doesn't have time off teaching to go. We just made a new plan for Kevin and I to go on a quick trip to Houston and on to Galveston Island for Valentine's weekend. So we will have some time to getaway just the two of us.

On January 14th Grant took me back to St Louis to have my stents replaced again. I thought it would be good to have a fresh set before my trip to Hawaii and Galveston. It ended up being much harder to bounce back from than previous times. My left duct is now completely closed off with tumor when the stent is not in place, and then, it is still very occluded and not open much. My doctor said that they were there for me when needed, but not to just have it done without having significant side effect of having my bilirubin very high, mostly if itching and fevers became big complaints. It took me several days to get over nausea, pain and tiredness. I am finally feeling good enough to be up and about for the whole day without laying down. So progress is being made. I don't know if I will have another exchange or not.

Yesterday we had family pictures taken. We had one from the wedding, but Miranda wasn't able to be there because she gets so sick the first few months of her pregnancies. It had been 2.5 years since our last ones and we have 2 new grandkids and Greg is now married. I can't wait to see how they turn out.

I met with my palliative care doctor on the 17th. We discussed hospice options and I am going to go ahead with one company that has a person on staff that comes and talks everything over with you before actually going on hospice. The thing is with my specific cancer and the fact that it affects my liver so much is that things can change fast and I need to have things in place so I don't end up in the hospital.

Please pray that I will feel good for as long as possible and that my time of sickness will go fast and not be as bad as it could. I appreciate all your care, concern and prayers. I value and I am grateful for your presence in my life. 

I love you,
Sheryl


Sunday, August 11, 2024

It's been a long time...

 Sorry to anyone that has actually checked this blog for an update! I talked to a friend at church today that said they occasionally checked to see if I had posted an update, so I decided to make one for him and anyone else that is wondering how I am doing.

I have been feeling really good this summer. In January, I stopped one of my IV chemo drugs due to some minor neuropathy I was having in my feet. I continued one IV chemo drug until the beginning of May, getting treatment every other week in St. Louis. I was feeling very run down and not really able to feel good before it was time to get another treatment. Because I was feeling this way, I decided to stop IV chemo and just feel better, and enjoy life with my family. My doctor said it was fine to stop. He wanted to see what my scans showed on July 1, and then decide what to do next from there.

My scans were mostly stable. The large tumor in my liver, the spot in my lung and the enlarged lymph nodes were all the same. There are 3 or 4 smaller tumors in my liver that were slightly bigger (their total size is less than one cm) and one possible new one, also smaller than a cm. He told me that he wanted me to experiment with the oral chemo I tried last summer and wasn't able to tolerate. He gave me permission to experiment with any dosage and try and get some, as it would be better than none. The small time I did take it last summer showed a shrinkage in the large tumor in my liver. So, July 29, I started taking the lowest possible dose one time a day. Tomorrow will be 2 weeks taking this dose. I feel pretty good, just a little tired and some evenings I feel nauseated. I go back to my oncologist on August 13 for bloodwork and a check in. This drug does raise my phosphorus level, and I may need to take a break. My plan is to ask if I can take this dose for 2 weeks and then take a break for awhile, take it again for 2 weeks, take a break, etc.

I feel like this is a plan that I can live with, getting a break from feeling tired and run down, then enduring it again for a short time. I also continue to get the stents in my liver replaced every 10-12 weeks. Next procedure is September 6. This keeps my liver functioning and the bile flowing, which is the most important thing for me right now.

I have totally exceeded the life expectancy of most people with my diagnosis. Many do not live a year past diagnosis, and my year anniversary was March 1. Many are unable to tolerate the chemo I took for almost a year for longer than 6 months. I feel like God is blessing me with more time, and for that I am most grateful. I just celebrated my 56th birthday. Last year on my birthday I didn't know if I would see another one. I am living life thankful for each day, trying to enjoy the little things. I'm enjoying my kids and grandkids and looking forward to Greg's wedding on October 27.

I should have scans around the first of October. If you're praying for me, please don't stop! I know that all the prayers have kept me here and feeling as good as I am. I don't take them for granted and appreciate them so much. I will try to be better at updating... I love you!

Thursday, December 07, 2023

Stable

Wow...over three months since my last update. I guess there hasn't been much to report. I had scans on November 1, and they were stable. My tumor is the same as well as my other spots. No new cancer. Some lymph nodes were smaller and some were bigger, so we are counting that as a wash.

I have continued to get IV chemo every other week. I am still getting 2 different drugs each treatment. Soon (not sure exactly when) I will have met the maximum I can receive of one of the drugs due to possible toxicity. When that happens, I think I will just get the one drug and see how my body responds to that. I would probably be able to get that here in Springfield, so that would be more convenient.

I had my stents replaced again on November 3. That all went well. I had a different doctor for the procedure, but he seemed to do just as good of a job. I had to have it done a little sooner than scheduled, so that was the reason for the doctor change.

So all things considered, I am doing pretty good. We moved into the house we purchased and are mostly settled. We hosted Thanksgiving and it was great to have everyone here. We are getting ready for Christmas and soon it will be a new year. Don't know what the new year will hold, but trying to count my blessings instead of trials. 

I should have my stents replaced again the middle of January and scans around the first of February. The chemo routine is getting old. I really wish I didn't need to take it. I know it makes me tired and not have much energy. Before I know it, it will be one year since my diagnosis. I don't think some of my doctors thought I would still be here!

Thanks for praying and I love you and Merry Christmas!

Saturday, September 02, 2023

Sickness, Scans & New Schedule

Last weekend I was very sick. I had not felt that bad since my diagnosis and the time immediately following my hospitalization. I knew my liver wasn't working like it should. I ran a fever for over 24 hours, I was achy and felt miserable. Monday we were closing on buying a house, so I didn't want to have to go to St. Louis. I didn't want to go to the ER here. So I pushed through and survived to Monday. We closed on the house (we are homeowner's once again) and I had bloodwork done here in Springfield.

My bilirubin level was more than double what it had been on Friday. My liver function tests were all elevated. I had confirmation on why I was feeling so badly. I called my GI doctor in St. Louis that replaces my stents. They wanted me to have my bloodwork rechecked on Wednesday. I would be in St. Louis that day for my scans, so it worked out well.

Tuesday I felt a little better and Wednesday better than Tuesday. On Wednesday, Garrett and I drove to St. Louis to get my bloodwork and then a chest CT scan and an abdominal/pelvis MRI. We did that and then went to the hotel.

Thursday morning I had an appointment with the eye doctor to check for any damage that the oral chemo pills might have caused. Thankfully all was well and I'm just getting older and needed a higher prescription for my bifocals. Then I had more bloodwork and we waited to see my oncologist to get the results of my scans.

As soon as he walked in the room, he said, "Your treatment is working!" Garrett and I were shocked, especially after I had such a bad weekend. My tumor had shrunk (a tiny bit - 1.4cm)! All other places I have cancer were unchanged, stable. We couldn't really believe it. Of course, we were so happy, just surprised to hear good news. I know so many were praying for me over the weekend and leading up to my scans. I do know that all glory goes to God for the improvement (no matter how small)!

We then discussed what to do for my future treatments. I had already decided to come back to St. Louis to get my chemo because I just had done so poorly both weeks when I had it in Springfield. Maybe coincidence, or maybe they do things differently. My doctor suggested doing every other week treatments to give my body more time to recover between. I agreed, and he said 4 treatments and then we will rescan to see where my tumor is at after that. He still feels the oral chemo has helped me, and discussed taking an even lower dose just so I get a little of it working on my tumor.

My new schedule is:

September 7 - chemo - St. Louis

September 21 - chemo - St. Louis

October 5 - chemo - St. Louis

October 19 chemo - St. Louis

Then rescan at some point after that

So we are unsure what caused me to be so sick, but I am better and my liver and bilirubin have recovered. Maybe it just needed to get some yuck out! Regardless, I am thankful for God's hand in my life, giving me more time. Please keep praying and I love you.

Thursday, August 10, 2023

I just had my 55th birthday

 


I know...it has been a long time since I posted. Sorry for any of you that have been waiting for updates. I had and MRI and CT on June 1, and it showed no change in my liver tumor, an additional small spot on my lung, but overall not a lot of change since my scans in March. I had genetic testing done on my tumor and it showed a rare gene fusion. There is a specific oral chemo medication that targets this gene mutation. 

I started taking it on June 14. Kevin and I took a quick trip to Florida to visit my best friend. While we were there, I had a bad reaction to the drug and took a trip to the ER to rule out blood clots and confirm it was a reaction to the medication. I stopped taking it for a month. When I went back to St. Louis to see my oncologist, my cancer antigen blood test had shown a significant drop. He wanted me to try the drug again at a lower dose to see if I could tolerate it. I started taking the lower dose on July 14. I seemed to tolerate it better. One side effect of this drug is that is raises phosphorous levels to an unhealthy level. This of course happened to me. To lower them, there is another drug to take. I am unsure which drug it was or if it was just the combination, but my joints began to hurt severely, and once again I had to stop taking the medication.

I saw my oncologist in Springfield today, and I will stop trying the oral chemo pill. It is hard for me to accept, because I know that it has a higher possibility of lengthening my life. It would not cure me, because there is no cure for the type of cancer I have. I will go back to the original chemo I had in St. Louis, but I will get it here in Springfield to lessen the trips back and forth. This drug kept my tumor from growing, which is a good thing. As long as my liver is working well, I feel pretty good even on chemo.

Here is my schedule for August:

August 14 - stent replacement in St. Louis

August 17 - chemo in Springfield

August 24 - oncologist visit and chemo in Springfield

August 30 - MRI and CT scans in St. Louis

August 31 - oncologist visit in St. Louis

Then I will continue with the 2 weeks in a row of chemo and one week off (one round) as long as I can tolerate it. I only had 3 rounds of it before, so I am unsure how I will do beyond that.

Thank you so much for praying for me and my family. We appreciate your love and care so much!

I love you, Sheryl

Wednesday, May 24, 2023

Cycle 3 tomorrow

 Sorry I have been bad about updates. The last several weeks have been busy with prom, graduation and graduation parties. I finished cycle 2 and will begin cycle 3 tomorrow. Last week on my week off from chemo I came back to St. Louis to have the stents in my liver bile ducts removed and replaced. That went fine and we were able to come up and back the same day. 

I have been a little sore and nauseous since then, but overall ok. Also very tired, but that is all to be expected. 

I will have chemo again next week June 1st. After chemo I will have a chest CT and abdominal MRI the same day. The results of these scans will determine the next steps. If my tumor size is stable or smaller, I will stay with this chemo regimen. It it has grown at all, I will stop this chemo and try an oral chemo pill. 

I am not sure what the future holds, but I’m sure that God will help me through. Please keep praying that I will continue to have few side effects and feel like doing more “normal” things.