Update: Episode 63 (11/22/2018)

Title of today’s episode: “Giving Thanks”

I am so thankful for having been able to participate in the LLS Light the Night walk on 10/12 with our team “Dudley’s Do-Righters”.  We had over 20 folks walk with us! Terri had ski caps made with our team name, and was able to raise over $3000 from donations, including from many on this email – thank you very much and love you Babe for taking the lead!

I celebrated my birthday on 11/9 with my families at home and at Hopkins!  I had appointments there starting at 7am and after some lab issues we were able to ‘sneak’ away 8 hours late.  The nurses decorated my day bed at the clinic so that was fun. The kids decorated our family room in Hawaiian motif complete with leis and music for the cake and gift parts of the evening and that was a great surprise.

We were able to spend a few days at the beach last month which is always relaxing.  We’ve also caught up with folks from in and out of town, including cousins and had a mini-reunion with some college classmates and spouses – we really enjoyed your company.  I told Terri with so many people wanting to visit I felt a bit like a tourist attraction and so appreciate seeing everyone!

As far as my treatment, feedback from my doctors at Hopkins and Seattle indicated there’s no real “golden ticket” out there given my situation. We’ve been continuing with the same chemo regime as before – I seem to be holding steady on this protocol, so will be on this for as long as we can.  Always looking ahead, there’s another drug we might try, and we will re-evaluate in January on whether that’s the path to take.

So, life continues with regular trips to Hopkins for chemo and product, and our family got bigger with the adoption of Leesa, a 6-year-old female greyhound.  She is an absolute delight and a very welcome addition (plus Terri’s doing all the walking, etc 😊)

As per this week’s holiday, I am so grateful for each day and for all you wonderful people who are so much a part of that.  Thank you for being there for me.  I am truly blessed to be able to get up, read the paper, walk (occasionally) and go through my day, and am planning on doing this many, many more times.

The calendar says it’s Nov 22 this year, but every day is Thanksgiving to us.

God’s Blessing,

Paul and Terri

Terri’s PS – Paul is soldiering on each month with this protocol, hopefully for many months to come!  Be blessed as we are blessed in the midst of the storm.

 

Update: Episode 62 (9/21/18)

Title of today’s episode: “Not the best of news”

I guess there’s no way to sugar coat this – my leukemia has returned…again!  My last few blood tests have indicated blasts (leukemia cells) in my blood.  We did another test of percentage of blood – mine vs. Connor – and showed that since end of July, it had gone from 9% me / 91% Connor to about 50% / 50% between the two of us.

Right now, the plan is to do another round of same chemo we did in August and September the first week of October.  In the interim, our oncologist is reaching out to other facilities for other treatments, and we’ve contacted the doctor we talked with in Seattle to do the same.  I will be going to Hopkins once or twice a week for red blood and platelets whichever is needed.

The good news (besides avoiding ambulance rides and hospital stays) is I am feeling pretty good, still able to walk up to 1 mile per day, and now able to enjoy a glass of wine every so often.  The fevers have not returned, so very thankful for that.

So, we do what we need to do, and are hopeful the doctor’s research provide some possible course of action or a miracle.  We are truly taking it a day at a time, thankful for each one and making the best of it.  Terri’s still my lifesaver and we celebrated her birthday yesterday. Happy Birthday my darling!

 

Thanks again for all your thoughts and prayers and as always, treasure your loved ones and live each day to the fullest.

God’s Blessings,

Paul and Terri

Terri’s PS:  I think both of us are working to get our feet under us for what the next few weeks/months hold and appreciate everyone’s kindnesses.  Thank you.  We are participating again in this year’s Light the Night walk in Reston on October 14th and will be surrounded by a bunch of people who are in the same spot we are and many who have beat this bastard!  If anyone wants to come out and walk with us, it would be awesome, or donate to the team “Dudley’s Do Righters.”  Donations go to Leukemia and Lymphoma Society (LLS) who are one of the mainstays to providing money for research for new therapies and currently have a Beat AML campaign going (which if they are lightning fast might help Paul, but…) . Just go here to learn more.  https://pages.LightTheNight.org/nca/Reston18/dudleysdorighters