It has been a while since I have posted. I do apologize as I indicated from the beginning I would update the blog so everyone would know how Bill is doing. Bill is going great. He will be 9 years post transplant on November 9, 2019. We are very grateful.
Over the last year or two we have met several folks that have been diagnosed with TPLL. Some are still with us, others have passed.
Jill - Merritt Island - Bill and I met Jill just before her transplant in 2017. She was a patient of Dr. Ayala, the same transplant Dr. as Bill. In December Jill will celebrate her 2nd birthday post transplant. We have kept in touch and will continue to do so.
Bert - Orlando - Bill has been in contact with Betsy and just got an e-mail that Bert is almost 3 years post transplant and doing well. Experiencing some balancing issues, but that is not slowing them down. We are happy to hear that Bert is going to be celebrating his 3rd birthday post transplant.
Joy - Australia - Joy was diagnosed in July 2017 and has been watch and wait. Just had her last update with her Dr. and will go to every six months. Joy invited me to join a Facebook group for T-Cell Prolymphocytic Leukemia, which I plan to join. Need to make sure people have information and hope.
Kathi - Michigan - Kathi contacted bill in May of 2015, she had her transplant in August 2017. In June of 2018 went back into the hospital for conditioning therapy. In August of 2018 Kathi noticed enlarged Lymph nodes that were treated with chemo and went away only to come back in other places. In November of 2018 Kathi lost her battle with TPLL. During Kathi's battle, she was an inspiration to everyone with and without the disease. Bill and I always commented about the life that Kathi lived and how she didn't let a disease control her. She put up a brave fight, Rest in Peace Kathi.
Kim Wheeler- United Kingdom - Kim had her transplant in October 2018. At the end of May 2019 the Doctors put Kim on another Campath regime. At the end of June 2018 after a long consultation it was decided that the Campath was doing more harm than good so all treatment would be stopped permanently. In July 2018 Kim lost her battle with TPLL. Rest in Peace Kim.
Jennifer - Texas - Bill and I first connected with Jennifer when she had her transplant in December of 2016. In February of 2017 had some bumps in her journey but eventually in May 2017 was released to go back to school to teach a 2nd grade class in the next school year. More bumps in the road in October of 2017. In April of 2018 Jennifer lost her battle with TPLL. Jennifer was young to get the disease, she left behind her husband Robert and two young children. Rest in Peace Jennifer.
Joseph - Turkey - We have not heard from Joseph since the end of 2017.
For those on their journey like Bill, keep on fighting.
1 comment:
Hello everyone my name is Neal Valenta and now after a successful treatment of Campath 3 years ago. Iam now in a fight for my life. I have been 77 days in the hospital and after 4 other Chemo's didn't work we started Campath again. I pray it will put my T-PLL into remission. I am 71 years and very active and was working full time before I entered the hospital in late February. I know God has a plan for me but I just pray to have some more time with my wife LeAnn who I love dearly. Reason for hospital bound are by platelets and blood counts are so low which cause getting blood and platelets every day. Any comments or suggestions would be wonderful. God bless each of you.
Neal Valenta
Dallas, Texas
Baylor Hospital
dnealv@gmail.com
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