The Shamanur Family
Donation protected
Thank you for taking the time to read this update. My name is Carmen Rich, I have been a nurse for over 20 years working in many different areas currently Vascular Access for Adults and Children to name a few. I have had the privilege of working in NYC as an advocate and healthcare translator to help patients and families navigate their medical diagnoses and treatment. With Sam's permission, we wanted to share with family and friends how he is doing, what he is facing going forward and how you can help. At this, time the Vanderbilt team has been working diligently to define his diagnosis. The Amazing Dr. Savona Director of Hematologic Malignancies Research and Early Therapy Program, and Professor of Internal Medicine and Cancer Biology at Vanderbilt University has taken his case to the Tumor Board and has humbly told us that he has never seen anything like this. The many tests to determine "why" his body is not producing healthy blood cells and platelets is taking a very long time. The specialty labs are very slow to give results and many times there have been inadequate samples or other issues. In the meantime, Sam has required weekly and often 2 blood/ platelet transfusions every week. The doctors fear that he is not able to wait on this magic diagnosis and everyone agrees the only way to help Sam now is with a Stem Cell Transplant. There are many hurdles to get to that point which can take several months. Our prayer is that this process will be seamless, we find a donor and that all the many boxes are checked that will allow his body to reset his immune system. Due to other obstacles such as low platelets, many tests are not able to safely take place and we are taking each test one at a time.
Please pray for a donor and his health during the waiting period. Although the doctors are all in agreement that this is the best option it is still frustrating not to know the diagnosis (cause) and be certain that this is the definitive treatment.
Sam will continue to work as long as he safely can but that is also a struggle. Amberlee and the girls are doing all the prep work for the home to be his clean and safe hospital room since stem cell transplants/ BMT's are now done on an outpatient basis. They will certainly need support in many ways and the best thing I can think of at this time is through this site. I will continue to post updates as we get them and I had the pleasure of accompanying Sam to his appointments to be a translator and cheerleader and make sure his care is coordinated. The next steps are finding a donor and getting Sam tuned up! I think we all agree that Sam is the kindest and most amazing friend, husband and father (among many other titles). Please lift Sam, Amberlee, Ashlee, Samantha, and Josh in prayer and support as they navigate the next few difficult months. They are looking at multiple trips for treatment and many potential extra costs associated with medications, testing, time away from work, and most importantly time together to keep him comfortable during his healing. He is still waiting to see what insurance will allow in terms of this treatment plan. I will update this as we get more information.
Hi my name is Danielle Wicks and I’m inviting you to help a family that is need of a blessing right now. My brother-in-law Santosh Shamanur (many know him as Sam) is facing a long battle with his health. He’s been living with a rare blood disease called Myelofibrosis.
This is an uncommon type of bone marrow cancer that disrupts your body's normal production of blood cells. Myelofibrosis causes extensive scarring in your bone marrow, leading to severe anemia that can cause weakness and fatigue.
Sam was taken to the hospital this week with the lose of a great deal of blood. He’s already received a great many blood transfusions since Monday…last count was 8. To put it lightly his tank was empty. He’s also had to have plasma and platelet infusions.
Today (7/20/22) he received a spinal tap. We don’t know anything concrete but we do know it’s not going to a quick recovery. This disease has progressed to the point that Sam is officially being put on the bone marrow donor list.
Sam is a vital part of our family. He’s been married to my sister for almost 21 years and they have 3 beautiful children. He’s an amazing provider, his first concern is making sure their finances are in order. I’m sure this fear of what could happen has weighed heavily on his heart.
Sam is also an amazing father. Those three kids are his world and he is theirs. He is involved in helping them with their schoolwork and sports. Sam just finished helping coach his son Josh’s baseball team. Amberlee is by far the most genuinely good person I know. She often works 3 jobs at one time, sometimes all in one day. It never matters how sore and exhausted she is if someone calls her and says “Amberlee can you…” they don’t even have to finish that sentence and she’s saying, “of course”. She has never worked a job where the people there haven’t become her best friends and she means it. She loves everybody and she is loved by everyone she meets.
My goal in all of this is to allow Sam and Amberlee time to deal with all these health issues without other worries. Both Sam and Amberlee will push themselves to get back to work so their family doesn’t suffer. My fear is the family will suffer more due to that stress. Sam needs time to heal. Amberlee needs the freedom to focus on her family. And the kids need to not worry, or be forced to deal with this alone due to Sam and Amberlee not being around because of work and probable long hospital stays.
If you can bless this family with the gift of money it would be appreciated. If you can’t or aren’t compelled to donate that’s understandable too, I just ask that if you’ve read this, you stop and say a prayer for Sam, Amberlee and their children. We know that our lives aren’t in our control but are in the hands of our creator, so both donations or either is just as appreciated.
Organizer and beneficiary
Danielle O'Brien
Organizer
Nashville, TN
Amberlee Shamanur
Beneficiary