Steve's MDS and Stem Cell Journey

03/26/2026

I was remiss in not posting yesterday because yesterday was the 9 month anniversary of Steve's stem cell transplant! He is doing well, much better than we expected at this point, although he still struggles with GI issues. He continues to get regular blood work and has regular visits with his doctor, and we know this will be his pattern for quite a while. Thankfully, he has not had any major illness that would require hospitalization. God continues to be faithful in protecting Steve (and myself) from that. Praise Him for His hedge of protection!

03/07/2026

Steve has started a maintenance dose of chemo at the suggestion of his doctor. It is only two days a month and will hopefully prevent the disease from recurring. Inqovi is a different drug than he was on before. Per the doctor's direction, he started it on February 20 and took a second dose two days later. It made him feel lethargic so he slept a lot, but thankfully it's only two days a month. It does suppress his blood levels; however, the doctor is monitoring those with regular blood work.

He is still getting infusions of pentamidine every three weeks to prevent pneumonia. However, his doctor has completely eliminated one of the drugs Steve was taking, and has cut back on another one.

We continue to marvel how well Steve has recovered from his transplant. With his doctor's blessing, we even traveled to New York to visit Dawn for five days.

Praise God for His goodness. He never fails 🙌

02/24/2026

It's been almost eight months since Steve's stem cell transplant, and today he started on a maintenance dose of oral chemo. His doctors are suggesting it as a (hopeful) deterrent from the cancer returning. He has to take another dose in two days, and then will not have to have any more for another month. This plan is indefinite, but we are grateful that it's oral and that it's only two days a month.

Steve still has to have an infusion of pentamidine (to prevent pneumonia) every three weeks but sometimes he is able to do that at a facility closer to home.

We continue to be grateful for God's grace and healing, and acknowledge His sovereignty and His goodness. 🙏

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." (Ephesians 3:20-21)

01/19/2026

It's a new year. Steve had his six month bone marrow biopsy on January 6 and the results were good. There is no evidence of MDS; however, his creatinine was way high, so his doctors ordered IV saline and pushing fluids. He did both of those over several days last week and his creatinine is coming down. (High creatinine levels can lead to renal failure 😔) He started his vaccines this past Friday--five different shots! He will have more over the course of the next several months, but fortunately MD Anderson schedules and administers those for him.

He was diagnosed with mild GVHD in his GI tract, but the doctor does not seem to be concerned with it right now. If it gets too severe, they can administer steroids to minimize the symptoms. He's still very careful about what he eats and when, and this has actually been a good thing for me because I have dropped a few pounds! We are relieved that we finally have a reason for the GI distress and that there are medications he can take to relieve it if it gets worse. His doctor is monitoring him and he continues to have regular bloodwork as well as regular doctor visits.

We continue to be humbled and grateful for God's intervention and healing in Steve's recovery. We know it is only by His grace that his recovery has gone so well. As Steve's stem cell doctor has said, he has had a "remarkable recovery." We know it is because of the prayers of His people.🙏🙏🙏🙏

12/20/2025

Christmas Day will mark 6 months from Steve's stem cell transplant. He got his PICC line removed yesterday since he is no longer receiving blood products and is not getting weekly blood work. He will get a bone marrow biopsy on January 6 and will meet with his stem cell doctor on January 9 for followup. He continues to be plagued with GI issues for which no one seems to have any answers. Other than that, he has been doing well, just extremely fatigued. We have been told to expect that this will not get better for awhile, which is a bit discouraging since Steve has always had lots of energy. We continue to give thanks for the anonymous donor who donated his stem cells to give Steve life, and even more than that, we acknowledge that God is sovereign and the Master Physician.

11/25/2025

Today marks 5 months since Steve's transplant! He continues to do well with his blood counts holding steady but still battling GI issues. (We assume the cause is the combination of meds he's taking). He still has his PICC line and goes weekly to MD Anderson to get the dressing changed, but we feel that will be taken out soon. His next doctor's visit is Friday, December 5, and then he goes on December 12 to get bloodwork. We are hoping he will get to start his vaccines in early January. For those who may not know, the transplant wiped out his immune system so he has to start over with them.

With this being Thanksgiving week, we have a lot to be thankful for, especially for your prayers for Steve's healing. 🙏

To God be the glory!

11/15/2025

Yesterday was Day +142 and we spent ALL day at MD Anderson. We left the house at 545 am and didn't walk back into our house until 535 pm, thanks to spending an hour and 15 minutes in Houston traffic!
Steve had several appointments, one of which was meeting with his stem cell doctor who appeared pleased with Steve's progress and blood numbers. Then we had to stay for an infusion to prevent pneumonia (he gets them every 3 weeks instead of taking a nasty oral medication called Mepron). Because they give Steve Benadryl beforehand, I had to be there to drive him home.

When we got home, both of us crashed. But how thankful we are that we live within driving distance of the #1 cancer center in the world 🌍

11/11/2025

Steve's results from his sigmoidoscopy on October 31 were negative, as were the biopsies that were taken. We can only assume he either had some GI bug that really held on, or that it is because of all the medications he's on. The good news is that since his test, he hasn't been having many GI issues. He is feeling better and while he still needs to gain weight, he is able to eat more normally and enjoy his food.

11/05/2025

Steve had his sigmoidoscopy on Friday and while we don't have the official report yet, the doctor did say she didn't see any sign of inflammation or graft versus host disease, which was a main concern. The doctor did take a couple of biopsies and we are currently waiting on those results.
Steve is having a better week with fewer GI issues, so we are hoping maybe it was a GI bug.

Thank you for your continued prayers 🙏

10/26/2025

I haven't posted in a while because there's really nothing to report, but yesterday was 4 months post transplant. It's really hard to believe it's been that long!

Steve continues to do well. He goes every Friday for blood work and to get his PICC line dressing changed. His blood values have improved pretty much every week and he has not had to have any blood products since he left the hospital in July!

This Friday, he will have a sigmoidoscopy (think "little colonoscopy") to try to determine why he continues to have GI issues. He will be on a clear liquid diet all day Thursday as prep. I sure hope this will help point to the reason he continues to struggle with these issues. He has lost even more weight since the hospital.

His energy level is slowly returning. We traveled to San Antonio this weekend to see Paul McCartney in concert (it's been on Steve's bucket list for years) and he managed quite well, even climbing stairs without getting too tired.

Our prayer request is that this sigmoidoscopy on Friday will reveal the reason why Steve continues to suffer with these GI issues. Other than that, we are extremely blessed that he has done so well post transplant

God is good all the time!

10/06/2025