Ted Fights Cancer Updates | April – June 2024
***April 24th, 2024
A Teddy update because it’s been a while:
He completed his 5th chemo treatment on Thursday last week. They did another CT scan, finally, and they also drained another 8 liters of fluid from his abdomen.
They found a couple of tiny spots in Ted’s lungs. Like around 3mm. They can’t confirm whether it’s related to the cancer or not, and there’s no way to test. The oncologist isn’t concerned about them and believes they could be inflammation spots. All we can do is monitor them.
The scan showed that the cancer is stable with slight improvement. While it is progress and it’s moving in the right direction, it’s not as much or as fast of progress as they’d expect at this point. She’s not confident we will be able to make the progress we need on this treatment plan, as it limits out after so many treatments. That said, the other options are second line treatments, and statistically, they haven’t had as much success with them. It is possible they could work better, because everyone’s different and reacts differently, but we won’t know unless we try… However, the risk with switching now would be if the other treatments don’t work as well, when we know that this one is at least moving in the right direction, even though slowly. Ted has chosen to ride out this treatment. The doctor also will let us know if any clinical trials become available, but there are none at this time. We will continue on with this treatment until he can’t anymore, and then there’s another treatment plan for after that.
Ted is feeling pretty well this week. A bit of a decreased appetite and sensitive stomach, and he tires out quickly, but otherwise, pretty good spirits, and he’s getting around pretty well.
I still can’t believe this is really happening. I’ll never understand it. All we can do is keep showing up, keep fighting the fight every day, and keep praying. This has always been in God’s hands. We continue to believe that He will heal Ted through any method He sees fit and in His time, though we pray it’s miraculously and quickly and SOON! I know we are in so many of your continued prayers, and we appreciate it more than I can ever express, but please keep them coming.
***June 5th, 2024
Last week, Ted completed his 7th chemo treatment. We’ve officially hit the halfway mark of this treatment plan. Last Thursday also marked 5 months since finding the tumors. Five long, painful, and incredibly challenging months, yet five months of pulling closer together as a family, making the best of every day, leaning into God, and of fighting with everything in us against this disease and sickness. I’m proud of how far Ted has come from the beginning struggles, of how hard he has fought, of how much his faith continues to strengthen, and how positive his attitude is most of the time, even when he has every reason not to be.
While he lost about 60 lbs in the first couple months, Ted has remained pretty steady since then, only fluctuating with fluid build-up. They continue to drain fluids every 2-3 weeks, draining about 8 liters each time. This provides him a lot of relief, from pain, discomfort, and difficulty eating. We are told fluid build-up is caused by irritation from the tumors moving around in the abdominal cavity. He has been able to eat pretty well a lot of the time, with some chemo related difficulties, as to be expected. Chemo days and the several days after tend to be the hardest. The side effects are harsh and make him quite sick, physically weak, and uncomfortable. Overall, we’ve learned what to expect, sometimes how to avoid triggers, and how to manage as much of the symptoms and challenges as possible.
We’ve had no new scans since the last update. Ted will get his first PET scan ahead of his next treatment and we will hopefully learn more with that. We are praying for amazing and miraculous progress!
Based on questions we’ve received, I realize that our faith and optimism may have confused some about what we’re up against. I want to clarify that our faith and optimism are separate from the doctors’ diagnosis and prognosis. As we’ve stated from the beginning, we know that our God is bigger than any disease, doctor, or diagnosis. We know that He is a God of miracles. We know that He can heal Ted, no matter what the doctors or tests say.
From a medical perspective: while there are success stories with DSRCT, this disease is an aggressive one with a poor prognosis. All we can do is pray and continue fighting the fight. We are exhausting the best treatments available at this time. The oncologist has been cautious not to kill our spirits, but has also dealt some difficult realities. It is a tough fight and it is not a quick fix. At this time, Ted is scheduled for chemo every third week, with this treatment plan completing in mid-November. There are 14 treatments on this plan because that is the number of treatments he can receive before this type of chemo becomes much more of a risk to his health, specifically the doxorubicin chemo. At that time, we will reevaluate, but again, this is the best treatment plan available, so the next treatments would be second line treatments, unless the tumors have shrunk enough for surgery. We are putting things together for a second opinion/consultation from Cleveland Clinic, especially about surgery as an option. Another possibility is if a promising clinical trial becomes available, which there are none we are aware of at this time. Many who have DSRCT fight for years. A blessed few get and maintain NED (no evidence of disease) for an extended number of years.
We have spent a lot of time researching alternative treatments. We have been overloaded with tons of tips, ideas, and suggestions, which we appreciate so much, but have tried our best to weed through and research. One thing I’ll share that we have learned is that not all cancers are the same. They cannot all be treated the same. They do not all respond the same. Sarcomas can be far more difficult, and this particular cancer (desmoplastic small round cell tumor) is especially difficult and can be resistant to treatment. While I hope and pray there is a miracle cure out there, and we are trying everything we can while being as safe as we can about it, please understand before you send information that what may have worked for some may not work for all types of cancer. This is in no way directed at any one thing or person, and we appreciate so much everyone trying to help, but it’s something that we are learning for the first time as well and I know it’s something not everyone understands. That said, we continue to research each suggestion sent, in hopes of helping fight this horrible disease.
Again, our faith is in God above all else. We know that complete healing will be a miracle because that’s how tough this disease is. But we believe God can and will heal Ted. We continue to do all we can, but we rest in God’s plan for our lives, His love for us, and His ability and willingness to fight on our behalf to give us a long, healthy, and blessed life together.
It seems like every part of our life has been changed by this. Nothing feels the same or normal. I’m living on the edge of tears and feel pushed beyond my max at all times, so I can only imagine how Ted feels. We have been faced with some really difficult decisions. We have had to have some horribly difficult conversations. And by the grace of God, we’re still surviving. Somehow, this is all a part of a bigger plan… God’s plan and timing. So we continue to pray and trust Him.
Jeremiah 29:11
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
***June 19th, 2024
Update from the 6/16 PET scan: The cancer is stable with no change from what the doctor can see. I asked if she saw any improvement at all from the last CT scan, and she said it’s really just stable. The radiology report confirms the same.. it is unchanged. Stable is good. Not growing is important. We desperately need the tumors to disappear. We need improvement. We need a miracle.
She wrote out some treatment options, including a clinical trial that will be opening up at some point. She’s also going to be sending his scans to a doctor at Sloan Kettering (one of the best for this specific disease) for an opinion on surgery, though she still believes it’s too high of a risk.
He’s leaning towards riding out this treatment (since it’s stable), which goes through November, and waiting for the clinical trial to open up and hopefully jump in on that. Hopefully it will open before the completion of this regimen in November. The clinical trial, although we don’t know much about it, may be his best medical option at this point, unless surgery becomes a real option, of course. The benefit would have to outweigh the risk for surgery because the tumors are so widespread through the abdominal cavity.
We are praying hard for a miracle, whether it be through medical treatment or not. Please continue to pray for Ted and our family.
We are so appreciative of all the help thus far and truly hate to ask for help at all, but any little bit helps us to keep going and for me to continue to be by Ted’s side. All prayers and donations are so appreciated. Thank you! ❤️
