Happy Summer!
We sure hope you are doing well and enjoying warmer days. We invite you to like our Facebook page, The National Bone Marrow Transplant Link and visit our website regularly to check out our recorded programs, which are added regularly.

We'd love to hear from you! Tell us what subjects you'd like us to cover for our monthly Lunch & Learns too. Email info@nbmtlink.org. Thank you.

Nuances of a New Normal
By David Weinstein
(Second blog)

"Nothing like the smell of your child's head to provide strength."

We’re so thankful and honored to continue to present the following second installation of our seven part blog series. David Weinstein shares his heart, grit, soul and bone marrow transplant journey with us. Each blog post will inspire you regardless of where you are on your journey.
Thank you David. You are a gift to this world.

It is 7:45 on Wednesday night. I am driving to Coleman Elementary School with my third-grade son in his car seat behind me. He’s in a performance at school. The phone rings in the car and I pick it up.

Earlier that day I had been at a standard annual check-up and everything looked good, pending the results of the lab work.

At the other end of the phone was my doctor saying, “David, get yourself to the closest hospital emergency room. I think you’re going to have a heart attack or a stroke.”

I told her that I wasn’t in a place to joke around. “Shall I call you back when I’ve arrived at school?” “Yes, call me back. This is not a joke.”

I returned the call after my son was in the school building. My doctor explained that my white count was 273,000, the consistency of whipping cream, and that I shouldn’t be awake or upright.

So I went home, closed the shades, turned off all the lights and my phone. That will make it go away. Then there was a knock at my door that wouldn’t go away. The person knocking was a very good friend who was filling in as my conscience. He was unwilling to co-sign my denial. Off to the ER we went.

Shock and denial. Plans rescinded. Goals interrupted. Reality is inconvenient. 

These states describe the first week or so during the diagnostic process; and when genetic validation of the suspected disease was confirmed, the willingness for absolute surrender to the circumstance and potential solution became paramount. Sinking my claws deeper into the steering wheel, trying to drive the bus in my preferred direction had to be abandoned because I had no sense of direction and no map. 

The best outcome was going to be the result of turning over control to those with the science and experience. This meant release of any form of control over my life, my surroundings and my future for an undetermined period of time; perhaps the most difficult thing I have ever done. It required complete blind trust in the science and the professionals administering protocol. 

Once a clear diagnosis was in hand, the day came when my hematologist, oncologist, immunologist, their nurse practitioner, a few family members and I were sitting around a table in a conference room at the University of California, San Francisco (UCSF) agreeing to the game plan. That game plan included the acknowledgement in writing that the estimate of my survival after the initial month as an inpatient was 20 percent; zero, if I did nothing. At that moment I gave up concerns about a single versus double room, having a coffee maker in my room, etc. I opened both palms up toward the ceiling. 

I signed the acknowledgement form, having surrendered my health. It is not mine while I’m under their care.

The next day I checked into UCSF as an inpatient; and thus became a series of rather long stays, to be described fully in the next BLOG in August.

Editor’s Note: If you would like to reach out to David after reading this blog, you may contact him at Daweinstein@sbcglobal.net

David seen here below again with his son, his inspiration.

Lunch & Learn
with the LINK

A Telephone Support Program for Patients,
Families/Caregivers/Loved Ones

Wednesday, July 21st
Noon EST (one hour)
(Please adjust your time zone accordingly.)

Special thanks To Our Sponsors: 
The Leukemia & Lymphoma Society, Incyte Corporation, Pharmacyclics & Janssen
and Omeros Corporation 
We also thank our Esteemed Link Partners, listed at the end of this newsletter.

GVHD and Steroids: Let’s Explore the Love/Hate and Other Options

This month's telephone educational and support program will focus on the love/hate of steroids as they relate to chronic GVHD. Dr. Masumi Ueda Oshima, Assistant Medical Director for the Inpatient Adult BMT Program at Seattle Cancer Care Alliance will break it down for us and share her expertise. Sharde Fultz, a chronic GVHD survivor will share her personal experience including details about how she has managed steroid use and GVHD. The nbmtLINK's licensed staff social worker, Jennifer Gillette, will facilitate the program. There will also be plenty of time for live questions.

This FREE program is intended to provide psychosocial and emotional support along with health information from national experts regarding critical topics surrounding cancer and treatments. This program is recorded and available on our website one week after airing live. (www.nbmtlink.org)

To register for this Lunch & Learn, please click above, to access the quick registration form.
The form contains the call in details needed.
If you have any technical issues related to registering, please contact peggyburkhard@nbmtlink.org or call (248) 770-5172. Note: YOU call in to participate.
(We do not call you.)
2021 Graft versus Host Disease

FREE Virtual Symposium Series

“Recent Advances in the Management of Acute GvHD”

Friday, July 30th, 2021 10 AM EST
This unique conference, which focuses on cutting edge research and new treatments, consists of two tracks: one designed for physicians and other health care professionals, and one for bone marrow transplant (BMT) survivors, their families, and their caregivers.
The Meredith A. Cowden Foundation in collaboration with the Case Comprehensive Cancer Center, University Hospitals Seidman Cancer Center, and Cleveland Clinic Taussig Cancer Institute created the GvHD National Symposium in 2010 to raise awareness about Graft vs. Host Disease (GvHD), to promote research to further our understanding of its cause, and to review cutting edge approaches to prevention and treatment.

Over 1,500 people have attended our events, which have provided an opportunity for attendees to interact with some of the world’s leading authorities on GvHD, a complication that affects over 60% of bone marrow transplant patients. Our past symposiums have served as invaluable experiences to learn, network, and exchange ideas with each other.

Due to COVID19 restrictions related to the pandemic, potential risks for our symposium and participants who may already be immunocompromised, we've decided to postpone our in-person meeting. We know that people with chronic graft versus host disease continue to need support and community. We also know how important it is for us to continue to raise awareness and education regarding chronic graft versus host disease. 

To address the continuing need to serve the community, we will host a series of short ‘virtual’ symposia, the first of which will take place on Friday, July 30th, 2021 at 10 AM EST. This free, 2-hour event will consist of a clinical presentation “Recent Advances in the Management of Acute GvHD” by Dr. John Levine from Mount Sinai, followed by a patient-centered Q&A panel hosted by the GvHD Symposium planning committee. 
 We hope that you will join us for the first of these exciting virtual events! We will host several others as well.
Link to register:
How We Help Others!
We are a phone call away for patients and their loved ones. From one on one peer support to scheduled call series and webinars, we are ready to ease your burden.
Patients, caregivers and health care professionals are amongst those we aim to help through our valued resource books, programs and one on one calls.
We simply cannot do it without the support of corporations, foundations and individuals willing to make a difference in the lives of others.

Special thanks to our Esteemed Link Partners, listed below, who make everything we do possible through their support.

Link Partners include cancer centers and allied partners who annually support our mission of providing psychosocial support to patients, caregivers, their families and health care professionals dedicated to helping people navigate a bone marrow transplant. If you would like to learn more about the many benefits (books, programs, hyperlink on our website, bookmark inclusion) to being a Link Partner, please do not hesitate to contact us at (248) 358-1886.

American Society for Transplantation and Cellular Therapy (ASTCT)
Barbara Ann Karmanos Cancer Institute
Blood and Marrow Transplant Program at Northside Hospital
Center for International Blood and Marrow Transplant Research (CIBMTR)
City of Hope
Dana-Farber/Brigham and Women’s Cancer Center
Froedtert & the Medical College of Wisconsin Cancer Network
Henry Ford Cancer Institute
Incyte Corporation
Memorial Sloan Kettering Cancer Center
Meredith A. Cowden Foundation
Nebraska Medicine
Oregon Health & Science University Knight Cancer Center
Roswell Park Comprehensive Cancer Center
Seattle Cancer Care Alliance
Siteman Cancer Center at Barnes-Jewish Hospital/Washington
University School of Medicine
Spectrum Health Cancer Center
Stem Cell Transplantation and Cellular Therapy Program, John Theurer Cancer Center at Hackensack University Medical Center
The Leukemia & Lymphoma Society
University Hospitals Seidman Cancer Center
Vanderbilt-Ingram Cancer Center