Today was a treatment day - made a bit more special in that September is Blood Cancer Awareness Month. Allow me to indulge in a moment of thanks for the great work of The Multiple Myeloma Research Foundation (MMRF) and The Leukemia and Lymphoma Society (LLS)-- two organizations that are doing so much to advance research and provide essential support for cancer warriors and their families.
If you don't think that your contributions to these organizations make a HUGE difference, let me assure you -- THEY DO! The clinical trial that has allowed us to have two more years (and hopefully MANY more) with Deana wouldn't be possible if the funds weren't there to support the work of these outstanding doctors and the medical professionals who support them. (A big shout out to all the terrific nurses - and our awesome coordinator, Kathy - who make our days at Winship Cancer Center so enjoyable.) Deana has again been fortunate to receive financial support from LLS to offset the cost of the copays for her treatment.
Since I've last posted, we have been graced with Clare's presence at a treatment day. It was just wonderful to have her be part of a Georgia weekend and allow her to meet all the people who are doing so much to help her mother. On Deana's last visit, her dearest friend from college days flew in to surprise her. I had so much fun conspiring with Mecca and I'll never forget the look on Deana's face when Mecca rolled down the window as we pulled into the curbside pickup. Deana's hand went to her mouth -- and then she started to cry. I have posted some photos to Facebook from that fun girls weekend - full of food, drink, laughs and love.
This weekend, Deana and I were glad to watch our beloved Aggies BTHO Auburn on Saturday night. A weekend with an Aggie victory is a sweet weekend indeed. Yesterday, we decided to get some culture and went to Act3 Productions performance of Clare Booth Luce's The Women. Though the play was written in 1936, it holds up well and did a masterful job of representing the good and bad of women's friendships.
And then there was today -- we arrived at Winship and were delighted to see Dr. Kaufman, who is the lead researcher on Deana's study. Dr. Kaufman was quick to let Deana know that she remains the ROCK STAR of this trial. There are some changes that are happening with the trial - none of which affect Deana, but it is important to note that her determination and courage have allowed the researchers to consider how this trial could help other patients. They are planning to add about 15 patients to the study and these patients will be receiving a steroid along with the magic elixir that has previously been known as ABT -199.
ABT -199 now has a name -- Venetoclax. Deana and I have decided that ABT-199 is easier for us -- at least for now. She's glad she doesn't have to add the steroid, as the side effects from steroids are not fun for her -- or her family.
Venetoclax has been approved by the FDA for treatment of CLL -- a form of leukemia. It will be at least three years before the possibility of FDA approval for Venetoclax as a treatment for multiple myeloma -- and that is just fine by us. From a financial perspective, there are tremendous benefits to the clinical trial. These pills would literally cost THOUSANDS of dollars -- and we cannot be assured that even if the FDA were to approve Venetoclax that the insurance company would approve Deana taking it. (I will not go into the insanity that Deana went through last week with the insurance company relative to the prescription for her neupogen shot -- no one, especially no one dealing with cancer, needs to spend precious time dickering with insurance over medications that they have been taking for two years.)
Deana's lab report was awesome, and so, to celebrate our fantastic report, we devoured a delicious lunch at Thaicoon and then Deana humored me with some thrift store shopping...where we acquired a great little book about hikes near Atlanta which shall prove to be good fodder for upcoming adventures. (Should I mention that there was a breakage in the holiday decor aisle????)
And so we commence Cycle 37. We remain more grateful than words can express to everyone who has brought us to this place. We are thankful for the continued thoughts and prayers and humbly request that they keep coming.
In honor of Blood Cancer Awareness Month, please consider a contribution to one of the organizations above and/or give blood if you haven't done so in the last 56 days. I'm on my way to the donation center after I drop Deana at the airport in the morning...
