In our monthly patient and caregiver stories, we share our community’s stories because each GIST journey matters. Your experiences as a rare disease patient or caregiver create a tapestry of strength, resilience, and shared understanding. By sharing, you not only break the chains of isolation but become a beacon of hope for others facing similar challenges. Together, these collective narratives shape a powerful force that drives awareness, research, and advocacy. Your voice matters, and by sharing your story, you contribute to building a stronger, more connected, and empowered rare disease community. Help others realize that even though they battle a rare disease & that each GIST case is unique, they are not alone.
Our Caregiver of the Month for May is Joyce Holthaus. Here is her GISTory:
Joyce’s GISTory
Joyce & Steve Holthaus – Illinois, USA
Our journey with GIST began on a chilly December morning. We started our routine as usual, with coffee; Steve had some granola, and we headed out the door by 9 am to attend a work event. Everything seemed normal.
Unbeknownst to me, Steve disappeared to the men’s room during the first hour of the event. Soon after, a friend came up to me and said, “Steve’s in the bathroom, and he doesn’t look too good.”
As soon as I saw him, I knew something was wrong. He asked me to get the car and as he got in, he was shivering; and I could tell he was in pain. He said he was having stomach cramps and thought maybe it was the granola or he had a virus that was going around. We decided to head home.
We were about halfway home, and by that point, he was freezing and shaking uncontrollably. That’s when Steve said, “I think we need to go to the emergency room.” Fear started to creep into my mind. I started to worry this was something more severe than just the flu.
When we arrived, they brought a wheelchair and wheeled him in immediately. The nurses administered morphine, took his blood pressure and other vitals.
The next thing I know the ER doctor was telling me my husband needed surgery! I was not prepared for that. I told the doctor I wanted to see Steve’s gastroenterologist first. Steve had a bleeding issue the prior April and I thought maybe this was related, and surgery sounded so drastic to me. The gastroenterologist talked with Steve a bit and then told me that I could trust the surgeon that was on call.
Meanwhile, the ER doctor pulled me aside and said that if they didn’t get Steve into surgery quickly, he could die. In surgery, they discovered that the tumor had perforated his bowel. The tumor ruptured during surgery, and Steve was in sepsis. The doctors had to perform a bowel resection and flush him out with 9 liters of solution.
The doctors were able to successfully operate on the tumor, and after almost a week in the hospital, Steve was released on his 60th birthday.
The recovery from surgery was rough for Steve. It took several days for his digestive system to wake up and start working. The surgical wound was left open so that there was less chance of infection. He came home with drains coming out of his body and wound dressings that had to be cleaned and changed daily. Luckily, Steve’s sister, who is a nurse, offered to come over and clean his incision every day. Eventually, I had to learn to deal with the surgical drains and do the cleaning myself, which made me a little nervous. Having never done anything like that before, I was always worried about whether I was doing it right.
Our first challenge was to find an oncologist that was more familiar with GIST. It didn’t take long thanks to the help we received from the Life Raft Group which I had discovered when I googled GIST. I handled all the research of trying to find a specialist for Steve.
The specialist we found from the list on The Life Raft Group website had so much information about GIST, our treatment options, and what to expect from the disease.
She reassured us that just because you have GIST, doesn’t mean you can’t have a long life. We felt very confident with her because she knew what she was talking about and had a plan laid out for Steve’s treatment.
As Steve’s caregiver, not only did I tend to his incision throughout his recovery, but I also was doing a ton of research on GIST. Steve asked me to keep him on a “need-to-know basis” with the GIST information. He tends to be anxious about that kind of stuff, so it just worked for me to do the research and manage his treatment. I went online and read and learned whatever I could.
I’m a hands-on caregiver and I go with Steve to all of his CT scans and doctors’ appointments. We have found that it’s really helpful to always have both of us there to help remember things and ask questions.
I remember when I was doing research and looking at statistics about lifespans with GIST. It made me so scared. But I felt like I had to keep that to myself. I didn’t want to tell Steve or our kids. I knew it would scare them. I felt like if I told anyone it would make it feel more real.
There is still a lot of uncertainty for us. I go back and forth, sometimes feeling strong in my faith that everything will be okay, and other times still feeling scared. I try to express how I’m feeling about everything, but there are times when I feel like I don’t have time to feel.
Coping with a GIST Diagnosis
I’m also realizing that holding on to all that fear, and being a caregiver, has had an effect on me. I was starting to feel those fears and uncertainties spill out into my life a little bit more. I’m realizing that maybe I’ve been more fearful and anxious over the last 13 years than I have fully acknowledged and I’m working on processing everything.
We have had a lot of ups and downs in this journey. Steve had three more surgeries…one just a month ago. There have been periods of NED (no evidence of disease) as well as disease progression where he has had to start a new medication with new side effects.
In July of 2023 we came to a low point in our GIST journey. At an oncology follow up, we learned that his tumor was growing at a concerning pace even while on the 4th line of defense medication he was taking. His tumor seemed to be resistant to the medications he was taking, so we discussed additional treatment options for him. We were told that he could “try” a medication that wasn’t approved for GIST and it may buy him more time!
We reached out to our church community, asking them to pray, while I also started reaching out to the GIST community online. I got a reply from someone telling me about a drug trial that might be a possibility for Steve. I promptly emailed the trial and explained our situation.
Before we knew it, Steve was going through the process of qualifying, which he did!
At the beginning of August 2023, he started on a drug trial, and it has been very successful. The first 15 months his tumor, that he has had since 2019, shrunk about 50% and by February of 2024 our oncologist began to talk about the possibility of surgically removing the tumor. His surgery was in April of this year and the tumor was removed. He will remain in the trial to see how this medication helps with recurrence (He is exon 9.)
Advice for Fellow GISTers & Caregivers
We try to live our lives one day at a time. We let go of what we have no control over and focus on the things that we can change. We both work hard on being positive and keeping our bodies well-nourished. And of course, we have continued to find support in our church community.
As a caregiver, finding support is so important. It has been a lot for me to carry, but I’ve begun to find outlets that are helping me process my emotions. I’ve found people I can talk to about what I’ve been through as a caregiver and their support has been powerful. I have to say, my role as a caregiver has also revealed some of my inner strengths and skills in an affirming way. It has shown me that I am good in a crisis and I can do the research and be a strong health advocate for those I love.
Hobbies We Enjoy
I am proud of how Steve and I have navigated all this together. We also try to keep living our lives to the fullest and having fun! We love to walk our dog, play Pickleball, and spend time with our adult children and our five wonderful grandkids. Over these last 13 years, I have learned that if I’m going to be a great caregiver, I have to take good care of myself as well. That means paying attention to my physical and mental well-being, finding support in loved ones and friends, and enjoying the beautiful moments in life with my husband and our family.
#GISTLife Motto
I would like to encourage our fellow GIST friends, don’t let GIST ruin your life. In the past 13 years the science has come a long way. Yes, it’s a hard, challenging road. Look for the joy in the little things in life and try to encourage others. Stay positive and allow yourself to open up and trust others to help you in your journey.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact our Data Mgmt. & Research Team, for more information: patientregistrydepartment@liferaftgroup.org
SUPPORT THE LRG & GIST RESEARCH BY DONATING TODAY!
