Bob Nordin Memorial Fund

Bob passed away on 9/3/2015 from a rare skin cancer, MCC (merkel cell carcinoma).  Being a living donor kidney recipient (thank you John), Bob perservered a difficult transplant recovery for a year, with flawless results, lasting 6 years.  In 2014, a small lump from his right hand was removed.  3 days later, confirming an extremely rare and lethal form of melanoma was confirmed. Bob got back on the horse, no pity or fear, 6 months of radiation, 15+ surgeries (tumor tuesday) we just penciled him in everyweek.  The incredible pain, suffering and medication regiment, not only for his routine daily transplant meds added a whole new learning curve to journey thru a cancer diagnosis.  There are so many I wish to thank, you all know who you are.  However, I have to call out, Dr. Graham (nephrologist), Dr. Cohen (transplant surgeon), Dr. Jordan (pediatria nephrology), Dr. Henry (internest pre-transplant), Dr. Sandler (radiation oncology), Dr. Essner (surgeon oncology), and noted thanks for getting Bob into (rare) clinical trials for PD-1 Dr. Omid Hamid from the Angeles Clinic.  For friends, Ken Brohard, Michelle Sisco, Michael De Hart, Constance Foster, Charlie deLimur, Adrienne Malka, Andrea Taylor, Martha Alonso, Debra Haas and Armand, Mary and Barry Davis, Jacqueline and Elie in Paris, Peter M., Justin and Charlotte from the UK (and so many more) around the globe,  kicked in above and beyond any expectations in so many ways.  Thank you! I miss my 'buddy', my love and my wing-man who was always thinking of others' well being.  Bob was a marvel of skilled science guided by an an incredible personable and talented team who had kept Bob alive for so many years,  is a great loss to humanity.  Bob's reach has touched many and I am blessed to travel the journey of love, life and laughter that got stronger every day over 30 year's.  I miss him so, the grief is overwhelming, I am blessed to share half my life with this incredible man.  It pains me to understand why and how I shared his suffering for so long.  It was time to make a decision of how to stop his suffering and find a team solution to honor his wishes to find a peace way to end his life.   With a team of skilled physicians, social workers, psychologists, pain specialists and technicians, Bob was able to control his last days on this Earth.  I know he is out there somewhere, reconnecting with family and former friends.   He is health, whole again and laughing spreading joy and good-will from those who can now enjoy his spirit.  The process of understanding insurance, mounting medical bills, non-approved FDA treatment and non-reimbursable deducations along with non-reimbursed out-of-pocket, unapproved medical bills and treatments have resulted in my family becoming financially devestated.  I learned to somewhat navigate the insurance system and public service assistance was a full-time job.  I am now picking up the financial pieces, stunned by the incurred costs.  I must now 'outreach' and find a way to gather resources to pay off my outstanding balance and keep what I can hold on to continue to survive.  This is where anyone of you wishing to contribute directly in Bob's memory, can help our family with any amount donation.  Your amount choice will go far.  I will pay it forward in honor and tribute to those of many at Cedars Sinai Hospital and St. John's, along with other important organizations who have given us so much for so many years; a few Donate Life and Melanoma Research with Dr. Hamid; so my FB buddies, friends, family, your generosity, in any amount will be able to help so many others.  I asked Bob how he endured and why was he able to absorb so much pain and suffering.  He never complained, was angry or gave up his personal struggle with what he knew was a lethal prognosis.  He shared with me only weeks ago, "if what I endured could help just one other person, it is worth the pain, multiple-procedures" he would perservere.  He had numerous ER hospital admissions, we both realized the band-aids on the Titantic were not effective, no longer were his talented and intelligent team able to provide relief for Bob to recover from incredibly complex and experimental medical treatments, it was worth his sacrifice.  He did not die without pain and suffering, I was there up to his last breath, I have to move forward to only find the good and happy times we shared for 30 years.  It will take me a very long time to erase the memories that cause me pain and trauma of what Bob had to tolerate.  With his love, ability to try to have some sense of dignity, I am positive our final decision and solution to his health challenges needed to transpire.  His kidney hailed strong, the cancer was never an option he could put into a short remission.  Bob had a challenging, complex medical challenge.  The science available was no match for Bob's condition.  Dr. Hamid, Dr. Essner and Dr. Jordan called in all their favors for Bob to be a 'trial test case', a non approved and non-FDA approved treatment, at final hour was picked-up by Bristol Myers Squibb picked-up the astronomical cost of Bob's oncology treatment.  Bob made it only through two infusions, he passed due to complications from a chronic MRSA infection, resulting in taking out a quarter of his chest, following fluid build-up, from the cancer, where surgery, chemo or radiation could give a small reprieve from this not understood and rare form of cancer for a transplant recipient.   Bob just didn't have the needed white blood counts to fight off the disease and infection; he came to the dog-fight with no protection.  Dr. Hamid (pushed, wrote an incredible argument to big pharma and FDA) to approve Bob for trials.  Hat's off to Omid.  His tenacious ability and never taking no for an answer, got Bob approval (I'd like to see his argument), at last hour as we were leaving his office, said ..'where you going, get your ass back in here, hooked-up, with staff staying late, allowed Bob, most likely the first to be approved for this PD-1 trial on an already immune-suppressed transplant patient.  Not for the faint of heart.  Hats off (I don' wear a hat, Cedars Sinai Talent : Dr. Graham, Dr. Jordan and Dr. Rick Essner, who brought Bob to the head of the class as 'model student' ....thank you, thank you, thank you.  To the transplant team at Cedars, to the Oncology Staff (Dr. Sandler) and skilled caregivers during many of Bob's surgeries and hospital stays, thank you!  My loss is incredible, but to those who knew him well or who met Bob briefly throughout the year's, he will be dearly missed.  Bob wasn't mine alone, I had to share, during this period of grief, I realize others need to participate and share their love of Bob and grieve in their own way.  Each day gets less painful, and I am finding how much fun, joy and laughter he intergrated into my personality, I AM A BETTER PERSON for having in my life and thankful for having the privilige understanding his true essence of being.