JOHN KENISON – my Family is my Rock

I spent a couple of years watching my CBC blood Test counts go up and down and my platelet count decrease. It was June 2017 when I was diagnosed with MDS by Dr Ali at the James Carey Cancer Center in Hannibal, MO, by a complete blood count test or CBC exam. We went to MD Anderson Medical Center in Houston, TX, for a second opinion. They agreed on the diagnosis and the treatment. My wife and I discussed the options we had, and I decided one good year was better than 2 or maybe 3 years with the treatment.

I discussed this with each of my five children and received mixed reactions. I asked them to prepare the grandchildren in their way when they thought the timing was right. My three older boys were ok with my decision. My youngest daughter was upset and called to talk to me. She had been crying all week. I needed to do whatever was needed, even for only 2–3 years.

My older daughter became very angry and told me in no uncertain terms that I would not let any of them get by with that decision. She also felt I needed to do all I could to fight the disease. She told me to fight the disease and keep track of my progress by doing regular CBC Home tests.

Jeanne, my 4th child, has a 9-year-old son, Chase, who is in karate. He wrote the letter here and gave it to me. I also received a letter from another grandson who said he was thinking about me and hoped I would not die. With all the objections from my kids and grandkids, I changed my mind and started treatment for MDS in July 2017 in Hannibal, Missouri.

My 9-year-old grandson, Chase

He has progressed in his karate training, and I have shared his accomplishments. Chase had a karate belt made with his name on one side and MDS Awareness on the other side. The key chain made for me has the MDS logo. He told me to always carry it with me and that he was fighting for me and wanted me to fight for him. I know he supports me, and I support him. Together, we have both done quite well despite our hurdles.

Dacogen treatments

I have been getting good reports on my CBC tests. The Dacogen treatments are working well for me so far. I have to take the drip for five consecutive days each month. The week of the treatment and the next week, I felt very tired and not very energetic. There is also pain in my legs and an upset stomach, and I walk slowly as the platelets and blood counts go down. However, this all improves over the following two weeks, as counts go up and I have some quality time.

After a couple of treatments and tests, we found I did not need transfusions. I am now able to go an extra week before the next treatment as the CBC continue to increase. This gives me an extra week of feeling better before it is time to start over. I continue to go to MD Anderson for check-ups every 6 months. They agree with the treatment, and the extra week works well for me.

Chase in Athens

Chase has also progressed very well in his karate. He won 3 national titles at the end of 2017 and has done quite well in many tournaments. Additionally, he was recruited by a travel team out of St. Louis. His photo has been used on several promotional magazine covers — some of which have allowed him a platform to encourage donations to the MDS Foundation. Chase also tried out for the USA team at age 10 and qualified to compete in 6 events in Athens, Greece, at the end of October.

While in Athens, he heard on the news that it was MDS Awareness Day and chose to wear a shirt they had made that said “Fight for what Matters” with the MDS ribbon. He wears this quite often. Chase was a finalist in all his weapons and forms events and came home with bronze medals.

His brother, Jacob (age 5), told me at Christmas that he would also fight for me when he goes to his karate tournaments. He also wears the “Fight for What Matters” shirt. All my grandkids always call me to let me know how their fights went, and they always ask how my CBC Blood tests are going.

love and support

The love and support of my whole family have meant so much to me and have brought me this far. My kids, grandkids, and I can talk about my disease as well as about their shortcomings, disappointments, and accomplishments. We are all fighting hard to work together to improve ourselves in all areas. I have an 80-year-old sister who also calls me after treatments to keep me updated on my test results.

My wife is the one who is with me at each appointment, keeping the records of my CBC test results and making sure we have the information we need. She encourages me daily.

The week of the drip, I was not very alert, and she drove me around. In the weeks to follow, as I felt the side effects and discomforts, she was there for me. I love her very much, and I am thankful to have her help. It was amazing to find this year that I could still get on the dance floor with her. In the picture of us dancing, you can see the MDS keychain my grandson gave to me hanging out of my pocket.

The love and support of my whole family has meant so much to me and has brought me this far.

I would like to encourage everyone to do as my family wants me to and give treatment a chance. One of the doctors at the clinic, Dr Buckstein, told me before starting the treatments that even though the success rate of the treatment for a man my age may be low, I may be the one in that percentage — but I would not know without trying.

With other health problems, I was amazed to find it works well. At my last visit to MD Anderson, I met a woman who told me she had been using this same treatment for 12 years. My wife asked her if she also felt tired and had no energy while taking the treatment. She replied she used to. However, as her haemoglobin and other counts went up, things improved. She gets regular CBC Home tests to confirm everything is okay.

I am glad I was encouraged by my family to do the treatments. I feel I have been making progress. The realisation that the treatments will continue for the rest of my life hits me. I have also been comforted and encouraged in watching and communicating with others dealing with the same disease. For those with MDS, please do not feel defeated and give up. There can be hope and improvements as time goes on.