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After ignoring symptoms of fatigue for 2-3 years, Nurse Brenda told Steve he needed to go to the doctor last spring. Steve was then diagnosed with MDS Leukemia. The first treatments he received were meant to encourage the production of hemoglobin. The hemoglobin did not feel enough encouragement to produce much. In September they started a monthly regimen of chemotherapy, which has provided a much more encouraging environment for the hemoglobin. Thus, more hemoglobin, more energy, more smiles, and a closer-to-normal everyday lifestyle.
Steve's oncologist helped us understand that the only cure for his condition is a bone marrow transplant, and that it is important to begin this process while in the best possible health. Given that he has reasonably good health, now is the time to do it, with the idea that he will experience fewer complications and an easier road to recovery.
The exact plan will be determined after he has an additional bone marrow biopsy on May 11th, but we know that Steve will check into UNMC-Omaha on May 17th to begin the process of chemotherapy, leaving a blank slate for the new, healthy cells to start up. 6 days later he will receive the bone marrow transplant provided by our unknown hero, the donor.
We truly appreciate all the care given to Steve by all the nurses, staff, and Dr. Salamat at Stormont Cancer Center. We are grateful for the support and prayers that we have received from so many friends and family. It has lightened the load of our burden, and is comforting to know that we are not alone on this foreboding journey.
Our unknown hero, the bone marrow donor, offered his or her marrow to save the life of a perfect stranger. We encourage you to go to
http://www.bethematchfoundation.org/site/TR/TBTM/Foundation?px=4892859&pg=personal&fr_id=4123 or try www.bethematchfoundation.org/goto/stevemartin
and offer to be a donor ( but you have to be younger than 45), or provide financial support so they can continue providing their amazing service of matching donors to those who need their life-saving gift
We also really want to stress that if you are feeling tired and lack the energy to enjoy your normal lifestyle, it is not necessarily a sign you are getting older. Regular visits with a doctor have benefits.
Second verse, same as the first, a little bit different, and we hope not worse.
Steve's marrow, for some reason, did not allow the donor's marrow to take charge. He was discharged June 13 and stayed in the apartment near Omaha with regular trips to the clinic to get blood and platelets. I think they call it transfusion dependent. Dr. Bhatt came down to the infusion center on July 5 and ordered a bone marrow biopsy. He said that there was no sign of the MDS Leukemia, but there were a couple of suspect cells that will be taken care of in the next round of chemo. He also said that the marrow was not working and they would look for another donor and call it an emergency to get things moving as quickly as possible. They were fast. Steve was back in the hospital on July 19th, started the chemo again on July 20 in the anticipation of a stem cell transplant July 26.
The transplant happened on July 26. We are waiting for the blood counts to rise as the new stem cells take charge of producing Steve's blood products.
We are grateful to the team of doctors here, who collaborate and problem solve together sharing their expertise with each other. The staff: nurses, techs, social workers, and housekeeping, are truly amazing and dedicated folk, showing compassion, humor, and patience. The Buffett
Cancer Center at Nebraska Medical is the right place for us to be.
We are also thankful for the Caring Bridge, which has allowed us to keep family and friends aware of Steve's progress, and Be the Match, the organization that solicits and tracks donors and so much more.
May 11, 2019
THIRD VERSE,
NOW I'M GONNA BE TERSE,
I'LL GET RIGHT TO THE POINT,
AND I'LL TRY NOT TO CURSE.
In October, Steve kind of had a crisis. His kidneys were overworked because the meds were so potent and he wasn't drinking enough water. At that point he was 99% donor blood. He had saline IVs to flush his kidneys and they changed his Graft vs. Host meds. The Graft vs Host meds are intended to slow down the donor cells because sometimes they get a little too excited and cause problems in a variety of organs.
Those new little green and white pills worked too well, and the donor cell per centage started to fall. By Christmas time he was about 60% donor. The Leukemia cells were also back. The docs say that the MDS cells were just well hidden, and as they got stronger, they were wreaking havoc on the donor cells. I believe my story about the nasty green and white pills is more accurate.
But, regardless of the why, Steve's blood counts slowly fell to the point that he again needed transfusions to keep going. Dr. Bhatt talked about another donation from the stem cell donor. But it would be TCells, and was not considered a transplant.
While waiting for the new donation, Steve developed antibodies in his blood, which made it difficult to find matches. The docs prescribed steroids which made his blood more matchable. And he had weekly transfusions to bring his hemoglobin to an acceptable range.
On March 22, Steve went to Omaha and received TCells from the European donor. (They have three more bags waiting in the freezer.) His white count and platelets started to rise very slowly. His hemoglobin was more stubborn. He continued to need transfusions.
In April, they started Steve on a biologic treatment that was supposed to encourage the good cells while helping destroy the leukemia cells. He has not had a transfusion since April 15, almost a month ago. The last labs showed both the platelets and white counts in the normal ranges, and the hemoglobin is between 7 and 8.
Our journey continues.
We remain grateful to the unknown donor, Be the Match, the Caring Bridge, all of our prayer warriors, and all the wonderful folk who donate blood, our family and friends, and God. The poem about the footprints in the sand has a more personal meaning than ever. We have truly been carried in God's loving arms, and as our journey continues, we know we can trust that God will take care of us.
October 1, 2019
Fourth verse
Same as the second
Stem cells coming
Last time, I reckon
Dr. Salamaat, the oncologist in Topeka, has been frustrated with Steve's journey. The protocol for a 65 year old man did not consider his great overall health. The chemo they used in the previous transplants was half of what it would have been if he had been a year younger. It wasn't enough to find and destroy the leukemia cells that were hiding.
The doctors in Omaha collaborated and came up with a new transplant plan for Steve. They provided enough evidence to convince our insurance provider to give it one more go.
Having a third transplant is extremely rare, but Steve is not the first. They will increase the chemo to 65% and do a full body radiation to stun the leukemia cells and provide the donor cells a better chance of finishing the job. They planned a stem cell transplant for September 9, but change their minds when the donor's blood didn't pass the final exam. They found a new donor, in Europe again, and will do the stem cell transplant October 15.
