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Apr 20, 2016 Latest post:
Sep 7, 2018
Hello sweet friends and family,
As many of you are already aware, our sweet Paul was diagnosed with multiple myeloma (Stage 1 by ISS, Stage 3A by Durie Salmon) over spring break in March. Though it has been a blow to be sure, we are hopeful and have great confidence that we have caught this early and he will do well. First piece of advice, anything you read about multiple myeloma that is older that 5 years is outdated; the prognosis and life expectancy for this form of cancer has improved dramatically in the last five years due to new chemotherapeutic agents, tweaking in treatments that are patient specific, and many more options in the pipeline. Throughout our multiple opinions we heard the term "excellent prognosis" many times, which gives us great hope. Though we know there is a LONG, arduous journey ahead of us, we are confident that Paul's attitude and determination to kick cancer's ass will prevail. Second, I apologize that this is so lengthy, but it may help to clarify some of your questions and explain why setting up this site was a daunting task because there is much to explain.
After extensive research by Paul's brothers, we have decided to seek treatment by Dr. Bart Barlogie, and his partner Dr. Sundar Jagannath at Mount Sinai Hospital in Manhattan (Barlogie was formerly at University of Arkansas and is the "godfather" of multiple myeloma). He utilizes an approach known as Total Therapy, which encompasses a rigorous course of chemotherapy over the course of several weeks (called induction therapy using 9 agents) followed by two bone/stem cell transplants. After round one of chemo (already completed as of yesterday), and when the time is right, Paul will then undergo stem cell collection (autologous or self donated) and shortly thereafter will undergo his first stem cell transplant. They hope to collect and freeze enough of Paul's own healthy stem cells for 8-10 stem cell transplants and they will be frozen for future use. ( FYI, stem cell transplants (SCT) and bone marrow transplants (BMT) are interchangeable terms and mean the same thing.) After collection/harvest of his own healthy stem cells, he will undergo his first SCT. We expect this to occur around end of June, beginning of July, but the timing is very fluid and depends on how he responds to chemo and any potential hiccups along the way. The SCT is a 3-4 week hospital stay in lock down isolation. Once he has the harsh chemo to knock out his immunity, they will immediately start transfusion of his healthy cells (autologous transplantation has zero risk of rejection). Such procedures are highly successful and we expect him to tolerate all of this well, except for normal chemo side effects (nausea, weight loss, hair loss, fatigue, immunocompromisation, etc). Recovery will be approximately 3 months with additional subsequent chemo. After he recovers from the first SCT, he will have another one sometime end of October/early November. Another several month recovery with almost daily blood monitoring and bridge chemo. This program keeps a close eye on everything, which we like. We will be in NY the entire time due to this rigorous surveillance. I will come home to Dallas from time to time as I feel comfortable leaving Paul and kids will visit also when practical/reasonable over the summer.
Thanks to the help of our wonderful, supportive family, a lovely small apartment on the upper west side was secured on our behalf (thanks to Dianne Hamer, Rob's wife), as Paul's treatment requires almost daily hospital visits for blood monitoring. It is a one mile walk across Central Park and a 5-10 min cab ride. The neighborhood is very nice, family friendly and safe. Danielle Hamer (Mark's wife) and their daughter Lauren stocked the apartment for us prior to our arrival and did so much to make it "home." Knowing they are close (Huntington, NY) will be of great comfort to us while we are here.
Our children, Solon and Hannah will finish out the school year in Dallas. Naturally, they are our biggest concern. We want to disrupt their lives as little as possible. They will be 17 in early May, so they know everything about their Daddy and we have promised to be truthful with them about this entire journey. We have encouraged them come to US with their questions as their is a lot of disinformation/outdated information about multiple myeloma (MM). I am told the Mayo Clinic and University of Arkansas have nice patient friendly information about MM on their websites if you choose to learn more about this condition. We expect to have Paul around for a long long time and are keeping a positive, optimistic attitude and would ask you to do the same, particularly with our children. Patricia and Mike Gallaher (Paul's amazing cousins, our age, who live in Dallas) have generously moved into our home to take care of our kids. Their two grown children, Katharine and Sean will be helping on the homefront as well as they also reside in Dallas.. We could not do this without them. The kids chose to stay in Dallas as have busy lives and have their support network back in Dallas and we are supportive of that decision. Bob and Pat (Paul's parents), David and Monica (Paul's brother and his wife), Uncle Jim (Deedy's brother) are also in Dallas, as well as Paul's brother John and Wendy (in Paris, TX) will all plug in and are helping where and when they can and have done so already. Rob and Mark were with us at every second opinion and helped us tremendously as we entered this vortex of MM. Paul's coworkers have been amazingly supportive and wonderful to us as well and Paul is working remotely on days when he feels up to it (and has my permission).
There is a great deal of hope in all of this. Just an arduous journey in the short run. By Valentine's Day 2017, we hope to have Paul home, hale and hearty and back to his amazing life. We look forward to that day with great relish!!! Our temporary address in the city is 808 Columbus Avenue, Apt 8E, NY, NY. 10025. Please know that if you text, call or email and you don't get a quick response from either of us, you will know why. We are either in transit, treatment, resting, too exhausted to respond, overwhelmed, or I am tending to Paul which is job number one. Our faith has been vital to us, we feel the hand of God all around us and in everything. We ask for yourcontinued prayers, good thoughts and intentions. At home, any help you can give Patricia and Mike is help to us and our kids. They are receiving a weekly meal on Wednesdays thanks to the Raney family. Many others have offered meals and I will help Patricia coordinate what works for her. The kids are taking everything remarkably well. It is only through the grace of God that we are able to get through this. We feel held up in prayer and understand that getting thru this interruption in Paul's life requires complete surrender to God...the anxiety, fear, lack of control, exhaustion, all of it. God's peace and grace will be enough. We love each and every one of you and thank you for the calls, texts, emails, cards, letters, meals, etc. The many gestures of kindness and love have been overwhelming and our hearts are full. A blanket "THANK YOU" to all of you for everything. Paul WILL prevail...he is strong and ready to fight. I will be right by his side to see him through and kick his butt when he needs it (because you know he will...stubborn as a mule). Heaps of Hamer love to each and every one of you. PRAY HARD!!! Paul, Deedy, Solon and Hannah