Time flies.  As I look back on my last post, nearly two years ago, there's so much that has transpired.

With a new year, I'm resolving to do a better job of keeping this blog up to date, as during the years my family has been living with multiple myeloma, many people have reached out to share their stories, and to let me know that our story has helped them.

Here's what has happened since February 2014....

In May 2014, I was able to accompany Deana to her appointment with Dr. Agha.  Unfortunately, Deana was not responding to the treatment I described in my February post.  Several others had been tried, and they too, were proving ineffective.  Dr. Agha told me he was worried and that he felt we needed to find a promising phase 2 clinical trial.  He had investigated a possibility at Dana Farber, but it wasn't a fit for our situation.  At this time, the main goal was to postpone the time until Deana would need a second stem cell transplant.

Since I suspected this prognosis was going to be the case, I had taken some measures in the week prior to this appointment to reach out to Winship Cancer Center and specifically, Dr. Sagar Lonial, who I had met shortly after Deana was diagnosed when I attended a multiple myeloma workshop offered by The Multiple Myeloma Research Foundation.  (If one of these sessions is offered in your area, I highly encourage you to attend.)

When I first met Dr. Lonial, I shared with him the basics of Deana's case, and he immediately offered his help should it ever be needed.  The time had come.  In addition to the acquaintance with Dr. Lonial, one of my Athens (Georgia) friends was a patient of his.  Now, it is never fortunate to have a friend with cancer...however, it was fortunate that she was able to assist with getting me through to the nurse immediately.

As we left UPMC on May 5th, Deana's records were already headed to Winship and an appointment with Dr. Lonial was being arranged.  As a world renowned multiple myeloma researcher, Dr. Lonial maintains a very full schedule, so we considered ourselves extremely lucky to get an appointment with him for June 6th.

Deana flew in from Pittsburgh the night before and as always, we had a grand time together.  We enjoyed a delicious Italian dinner and spent the night at the beautiful Emory Conference Center hotel. It is an oasis in the midst of Atlanta and I highly recommend it.

We arrived at Winship where everyone we encountered was incredibly welcoming and friendly.  The appointment with Dr. Lonial was all we hoped for.  He was not alarmed by the situation and felt there were viable options to explore. We had a lengthy conversation about all measures to postpone the time to transplant, since Deana only has enough stem cells banked for one more transplant.  (As an important note, we learned that Winship's protocol for stem cell harvest is to obtain 15 million cells and to divide them into three bags of 5 million -- enough for three transplants.  UPMC apparently separates the 15 million into two bags of 7.5 million -- enough for two transplants.  I suggest anyone preparing for stem cell harvest investigate this matter carefully.  I'm not up to date on the current recommendations and would not want to offer incorrect information.  I wish that I would have known this prior to Deana's harvest so that we could have maximized our options.)

Dr. Lonial suggested a bone marrow biopsy and blood work so that he could get his own results which would enable him to choose the best option.  Deana was not a huge fan of the bone marrow biopsy at that point, although the subsequent ones at UPMC were much better than the very painful first one.  She was assured that the Winship team are expert at BMBs and that she would be given good drugs to help.  Whatever they gave her, I want some.  She was quite the character after we left Winship.  Even now, she tells me that she asks when she can have her next BMB because the experience is so good there.

My memory gets a bit hazy here, as I had a few life changes occur after we left Winship that day.  In brief, Dr. Lonial reviewed the results and was able to get Deana into one of his clinical trials.  She began treatment in August and within two cycles, she was back in remission.  Yes, we were (and remain) incredibly thankful. For me, the most amazing part was Deana sharing that Dr. Lonial told her that he knew the drug was going to work, because he had sent some of her samples to his lab and had them tested with the drug.  What he wasn't certain of was how Deana would respond to the drug in terms of side effects.  I cried when I heard this because it solidified that when facing cancer, it is so important to have access to the great minds doing the groundbreaking work on your particular form.  I cannot say it enough -- we are so thankful.

So, for the last 14 months, the new normal consists of Deana heading to Atlanta every three weeks for her appointment, which takes about 5 hours.  The success she is experiencing with this drug has caused her to be a bit of a celebrity at Winship.  She's been filmed for a video and her story was featured the Summer 2015 issue of the Winship magazine.  Last month, I was finally able to accompany her to her appointment and was thankful for the opportunity to express my gratitude to all of the wonderful people who are taking such good care of my sister.

If you are interested in being entertained by Deana's accounts of her travels to and from Atlanta, although she doesn't post often, she has some humorous stories on her Caring Bridge site.  I continue to be inspired by my sister and her strength and determination.  I am not sure that I would be as brave in these circumstances.

I hope that 2016 will be the year a cure for cancer is found.  Until that time, though, I will do what I can to raise awareness and to help others who are in this fight.