I’ve been a little uncomfortable as I planned for this latest post.
I contacted a bunch of famous hosts hoping to take the burden off of me – Jerry Lewis, Richard Dawson, Bob Hope, Alec Baldwin, Steve Martin, Billy Crystal, and Bob Barker. Oddly, half didn’t get back to me and others responded with, “Mr. Crystal requests that you remove yourself from his property.” So, I’ll go it alone.
As you know, Jen and I have spent the summer in Bethesda, MD, at NIH for my allogeneic transplant. My progress has gone very well. It is too soon to really know if this transplant will be successful or not. But all signs are looking positive. I am currently riding the wave of symptom management (GVH of the gut and skin, high glucose levels, steroid withdrawal, treating minor infections, drugs to prevent infections). Every day we go back to NIH for changes and check-ups.
This summer away from Los Angeles has been long and difficult. Jen had to take a leave of absence from work. We have been 100% dedicated to my health. Life is on hold.
Although the expenses are manageable, we have had to balance a life back in Los Angeles and a life here. In addition, I will be coming back forth to NIH for many months and years to come on a regular basis. My outpatient treatment will take place at UCLA – weekly blood draws and check-ups and emergency services. Recovering from allo transplant – especially when you live far away from your main treatment center – adds up.
With this in mind, we decided to reach out to all the new friends and old friends, our supporters and our fans, and ask for a little bit of help.
The National Foundation for Transplants (NFT) runs a service for bone marrow transplant patients which provides a site for donations. The best part of the service is that they keep the money and only disperse it to us for costs related to medical expenses. We don’t get blank checks – they regulate the dispersement. Their guidelines are pretty strict and it keeps the patients removed from the actual funds – no spending the money on cars, booze, or women. Or in our case, cameras, fantasy football, and toys for our friend’s dogs.
We send in receipts and documentation and the money goes to expenses directly related to the transplant process – medicines, insurance premiums, tests, travel expenses related to medical care, etc. The money will forever be available to me as the effects of the transplant will always impact my life. But, if/when I don’t use the funds anymore, they get disbursed to other patients in the registry – your donation never goes to waste.
All of you have been extremely kind, supportive, loving and caring over the past 3+ years. If you read my blog from the beginning, you can get an excellent sense of a patient’s journey as they ride the wave from optimism and hopefulness, through the many setbacks, the pain and discomforts, the heightened appreciation of good times, the resignation and the fight.
I continue to fight. Every day. Every minute. Just a few months ago I was told that I was basically out of options. My transplant and the care at NIH have given me a 2nd (3rd? 4th?) opportunity to live a life that isn’t dictated by doctor’s appointments and medical treatments.
I consider myself extremely fortunate.
But I also must face the reality that this process has taken a huge toll on us – physically, emotionally, financially.
Jen and I deeply appreciate your continued support and love. All of you are an important part of my recovery. I’ll never know how to adequately express my gratitude. Even in the darkest black, love does shine through.
If you can…if you can afford…and if you’re looking for a way to show your support and contribute to my recovery – please follow this link and consider a tax deductible donation to the medical and travel expenses related to my care and my transplant.
And thank you very, very much. I am forever grateful.
Stephen and Jen