Post #79 - Happy Anniversary - 12 years post transplant

 

Hello everyone, I can't believe another year has gone by. I am so happy to be able to provide updates on this blog and give some hope to those that are reading it. I continue to keep in touch folks that I have met through the years and am excited to see people are living longer post transplant. 

I really owe my followers and folks that have posted comments an apology.  I had been having trouble with the platform and was not seeing the messages and posts that folks were making.  I just found many older comments and I am disappointed that I was not able to find them more timely.  If you posted in the past and still want to connect, please post again.  I will check weekly going forward.

Please reach out if you have questions or comments.  If you post I will review and answer. If you want to keep your post private, say that in the post and I will not make it public. Please provide a way for me to send you an e-mail if you want to stay private.

There is a group on facebook that I belong to that is very active in all things TPLL.  The name of the group is:  T-cell Prolymphocytic Leukemia (T-PLL).  It is a private group so you will need to request to become a member.  There are currently 362 members.

Wishing everyone dealing with this disease, both patient and caregivers, a happy Thanksgiving, Christmas/Holiday and New Year. 

 As I have said, I will continue to provide periodic updates so you know I am doing well.

Post # 78 - I'm still here!!

 Hello everyone, it has been two and a half years since our last post.  I am so sorry that I have been away for that long.  I have been active in a TPLL facebook group and have been in communication with many that have found this blog.  I am so happy that I was able to leave a path for others to find.

I am doing well.  Had my last check in with Dr. Ayala at Mayo in Jacksonville about six months ago and everything is in the normal ranges.  

Hope you have found this blog helpful and it continues to help others.

Bill

Post #77 Happy 9th Birthday Post Transplant & Mike’s caregiver speech at the Moffitt reunion November 2015

Hi everyone, it was 9 years ago (3,285 days) today that Bill had his Bone Marrow Transplant.  He is continuing to do well and we are happy that we have such a supportive following.  Over the years we have met so many folks who share in our journey, by finding this blog.  We are still committed to keeping up the blog through the years to leave a trail and to provide hope.   Happy Birthday Bill.


I promised in my last post that I would provide a link to the caregiver speech that I gave at the Moffitt Bone Marrow Transplant reunion.  With this video I celebrate the caregivers that support their loved ones through their journey.  Enjoy!!

Mike's Caregiver Speech - November 2015   < < < click on the link

Post # 76 - Bill is almost 9 years post transplant and doing well. Update on some others we connected with over the last few years

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.

Post #75 - Joseph from Turkey

Back in July of 2017 Joseph from Turkey found us via this blog.  He has been communicating with Bill via e-mail since.  Joseph was diagnosed with T-PLL while living in Turkey.  The treatment there is more traditional for Leukemia, they would not use Campath until the more traditional treatment failed.  Joseph completed the traditional treatment with no success and was then given Campath.  His WBC is 1.81 after a month or so on Campath.  As we get information from Joseph we will update the blog with his journey.

On January 19, Joseph sent us a link to an article about a new treatment for T-PLL.  Please use the link below to view the article.  https://www.news-medical.net/news/20171024/New-drug-offers-hope-for-treatment-of-aggressive-T-PLL-leukemia.aspx

We are happy to see that T-PLL is getting some attention with the drug manufacturers.

Post # 74 Happy 7th Birthday post transplant to Bill

We have much to be thankful for.  Today marks seven (7) years post transplant for Bill.  We continue to hear from folks from all over the world as they continue their journey.  May Bill's 7th Birthday post transplant be an inspiration to all of them.

Update on Bill and responses to others

Post #73
Hi everyone, Bill continues to do well on his journey.  He has celebrated another birthday and in November will be seven years post transplant.

Kathryn - you just posted to the blog a few minutes ago.  I am sorry that you loved one has received the news that they have T-PLL.  Bill and I would be happy to speak with you via e-mail or by phone. As we have done in the past with others, please post a message with your e-mail address or phone number and we will get it.  We will not publish the message so you personal information will be safe.

Update on a dear friend that had T-PLL - On Post #73 in November of 2016, I indicated that Larry Basil was have problems post transplant.  In December of 2016 Larry Basil lost his battle with T-PLL.  He left behind his wife Donna who was a wonderful caregiver.  Bill and I went to his funeral and continue to keep in touch with Donna.  A few weeks ago, we spent four days in Alabama visiting with Donna and we had a great time. We only knew Larry for a little more than a year, but it seemed like a life time.   Rest in peace Larry.

Picture of Bill on the left and Larry on the right.  Taken the second week of November 2016.  Everyone thought they were brothers.

Post # 73 - Six Years Post Transplant - Day T + 2,191

Today marks 6 years post transplant for Bill.   Bill has his six year check up with Moffitt next week.  I am so happy with his success and health post transplant.

Bert recently had his transplant on October 5, 2016.  Bert is T +33 as of today and so far things are going well.

Chaaya from England has been communicating with Bill.  Her friend just recently finished Campath and waiting for his transplant date. Both of his sisters were a match, his brother was not.   Chaaya keeps Bill informed of her friends progress.  We wish him a smooth and easy transplant.

Larry Basil is T + 395.  Larry has run into some problems in the last few months.  He is currently dealing with graft vs host disease in his liver.  He is being treated at Moffitt with prednisone.  We are keeping Larry and his wife Donna in our thoughts and prayers.  Bill communicates with Larry on a regular basis.  We are hoping to see Larry when we go to Moffitt next week for Bill's check up.  A few weeks ago, Christine Jameson visited Larry in Florida.  I know it was special for Larry and bitter sweet for Christine. 

 On a sad note, Kyle Jameson did not make it through is journey.  He leaves behind his wonderful and supportive wife Christine and son Liam. On Day T + 33, May 15, 2016 Kyle passed.  Both Bill and I were very sadden by the news.  Kyle and Christine fought the fight as best they could.  Christine has some of the most amazing pictures of her and Kyle on her Facebook page .  One of my favorite is below.




Please continue to read the blog and know that we will always provide an update so you know how Bill is doing.  If you would like to contact us, please leave a response with info on how to get in touch, we will not post your personal information.

Post # 71  Responding to a few friends that have found us through the blog
Betsy contacted us in November of 2015 after the reading our blog.  Her significant other, Bert was diagnosed with TPLL and was starting his journey.  We met for a lovely dinner in Titusville, FL and had great conversation learning about each other and answering questions they had.  Bill and I wish them the best of luck on their journey.

Christine and Kyle Jameson contacted us on Jan, 22 2016 after they read the blog.  Kyle is on his journey towards transplant, which is scheduled for approximately April 15th.  Kyle is a strong young man who has a donor and has a strong caregiver/advocate, his wife.  That, with his great attitude will help him through this journey.  We think about Kyle and Christine everyday and follow them on Facebook.  It is heart felt to see the number of followers they have and the amount of support and prayers they receive.  Christine, Kyle and their baby boy Liam are temporarily living in Manhattan for the transplant to be performed at Sloan Kettering.  They live in New Hampshire and have been away from home for several months now.  Please keep them in your thoughts and prayers.

May of 2015 Kathi Haehnel contacted us through the blog and is on her journey, Bill spoke with Kathi back then.  Hope her journey is going well and we wish her the best.

Larry Basil is six months out post transplant and is doing well.  Larry is undergoing his six month testing at Moffitt this week, we wish him well.

The most recent post was yesterday April 1st from Marilyn who lives in Australia. We are happy that you found our blog, it is there to give hope to those that follow us.  Having a transplant is a decision that only you, your family and your doctor can make.  There are many factors that come in to play such as age and health.  With the lung issues you have had, the Pulmonary Function Testing that is required to determine if you are a candidate may be a challenge for you.  We have heard of people your age that have been candidates if they are healthy and strong.  We are happy to help you in any way we can.  If you would like to contact us, please leave a post with your e-mail or skype name.  We will not publish the post, so your information will be confidential.

Post #70 - 1825 days and counting (5 Years)

Bill celebrated his 5 anniversary post transplant on Monday November 9, 2015.  Bill is doing great and looks great.

On Sunday November 8, 2015 Bill and I attended the Moffitt Transplant Reunion in Tampa, FL.  The event was well done and we enjoyed the presentations.  As Bill would say, "of all the people that attended the event, Moffitt ask Mike to speak to represent all the caregivers".  It was an honor for me to do so.  If you are friends with Bill or I on Facebook you can see a video of the speech.  As soon as I can, I will post the video here as well.

Larry Basil, who had TPLL, found Bill through this blog.  Bill and Larry kept in touch through Larry's journey and after the reunion this past Sunday, we met Larry Basil and his wife.  Larry had his transplant on October 6, 2015 at Moffitt.  Larry has been discharged and is outpatient near Moffitt until he reaches his 100 days.  Larry looks great and is doing well considering what he just went through.  Larry, stay strong!!

Next week, we go to Moffitt for Bill's 5 year check up.  I will provide an update after the visit.

Thanks for your continued support and dedication to reading the blog.  Keep the comments coming.