Special Feature – “Living with Leukemia – A Story of Survival”
Special thanks to Judy Webb for sharing her story, “Living with Leukemia: A Story of Survival” a feature originally published in Communiqué (October 2017). Last year, the Light the Night Walk honored Scott Webb as a “patient” and this year honors Scott as a “survivor.” Scott and his family greatly appreciate the CCBA Community Service Committee’s participation and support in the Walk. Scott and Judy Webb’s brother in law, Paul C. Ray, volunteers on the CCBA Community Service Committee.
Living with Leukemia – A Story of Survival
By Judy Webb
On July 27, 2016, my husband, Scott Webb, was diagnosed with CMML. He had been a very healthy man until the end of June 2016, when he developed a few symptoms that actually seemed very harmless . . . bruises, tired, dizzy, and a small nose bleed. At first, medical professionals thought that maybe he had ITP and would need his spleen taken out, but, as standard procedure, they performed a bone marrow test before they moved forward with ITP treatment. Through the bone marrow test (BMT), an oncologist was able to find the CMML. We wanted a second opinion, and about 10 days later, we meet with an oncologist at a cancer institution that is one of the best in the United States. It was determined that he did, indeed, have leukemia, but it was not clear if it was CMML or AML. They decided to do another BMT, and were surprised to see the change in his test results from the first BMT done about three weeks prior. The oncologist at the cancer institute said that they had not seen anything quite like it! We knew we needed to start a treatment plan as soon as possible, but the treatments varied drastically depending on whether his leukemia was CMML or actually AML. But, before he could start any treatment, they needed to get him stabilized. The leukemia was aggressively moving through his body and he was in excruciating pain!!!
He checked into the hospital because of the pain and they found that he had a lot of fluid in his lungs. They began giving him pain medication and started draining the fluid from his lungs to alleviate the pressure and pain that he felt in his chest. They also wanted to take a biopsy from his lymph nodes, but because he was “burning through” his platelets so fast, they were worried that he might bleed out during the procedure! They were able to perform the biopsy without complication, although he has a noticeable scar on his neck, because there was not time to make it pretty. While he was in the hospital, our youngest son was getting married in Iowa! Of course, he planned on being there, but was unable to make the trip.
Unfortunately, many of us had to make the decision of going to the wedding of our son and brother, or staying with Scott in the hospital. We made the very tough decision that I, being the mother of the groom, and his brother and sister would go to the wedding and that our daughter-in-law and Scott’s brother would stay with Scott. When I arrived home on Sunday, August 21, 2016, Scott had been released from the hospital that morning. It was soooooooo good to see him, even though he looked like he had had a very, very rough week, which he had!
Two days later he received a call from a different hospital in our area that specializes in leukemia and bone marrow transplants/stem cell transplants (BMT/SCT). Although Scott had felt pretty good since he was released from the hospital, they said that Scott needed to come in ASAP and to plan on a few weeks’ stay in the hospital. When he asked if he could wait until the next morning, they said “NO! It is urgent that you come in RIGHT NOW!” Scott packed a bag and I drove him to the hospital. Our grown children met us there, and we had a meeting with one of the doctors from the BMT/SCT team right in Scott’s hospital room. The doctor was very serious with us and told us that there was ONLY a 40 percent chance that he would survive and walk out of the hospital! That was the most frightening thing I had ever heard in my life!
That night, after family left the hospital and I was on my way out too, Scott started having intense pain throughout his body! He said that the pain was “in the very core of my [his] bones!” He said he had never been in this much pain before! We later found out that this was when the CMML was very aggressively changing over to AML! The next day, they moved Scott into the ICU so that he could have more urgent care and medical personnel checking on him more regularly. They found that his lungs had filled up with fluid again and had to insert a drain! He was in the ICU for about 10 days, and then they moved him back to the BMT floor of the hospital for the rest of his induction. This total hospital stay was about four and a half weeks. During this time, the doctors tested Scott’s two brothers to see if they would be a match for his stem cell transplant. We first received a call that his youngest brother was NOT a match! We were so worried and knew that our only other hope was his older brother. After what seemed like the longest 24 hours of our lives, we received a call from the hospital saying that his older brother was a PERFECT match! We were so relieved!
Our son, who got married in August, was now having an open house here in Utah for our family and friends on October 15 and Scott was able to make it to that, but barely! Five days later, on October 20, 2016, Scott had to have his spleen removed because the doctors determined that, in addition to AML, he also had ITP.
On November 7, 2016, Scott checked into the hospital to prepare for his stem cell transplant, and on November 16, 2016, he had a successful transplant. He stayed in the hospital until December 14, 2016. We were really hoping and praying that he would be home for Christmas! The day before his release, our son, who lives in Iowa, surprised him by coming into town to be home for Christmas.
In January 2017, Scott came down with respiratory syncytial virus (RSV) (a respiratory virus) and had to go back into the hospital (in isolation this time) for a week. He celebrated his 100 days post-transplant on February 24, 2017, and has been leukemia free since then. He has not had any more hospital stays either! He is slowly gaining his strength, but it is a LONG process. The highlight of 2017 is when he was able to walk our daughter down the aisle on her wedding day on June 10, 2017, and was also able to do the father/daughter dance at the reception later that night.
We know we have been truly blessed that Scott has beat the odds. We also have been very blessed to have such love and support from family and friends.
CMML=Chronic myelomonocytic leukemia
ITP=Idiopathic thrombocytopenic purpura
AML=Acute myelogenous leukemia
BMT=Bone marrow transplant or test