It was fun to have our Emory day fall on a holiday. Deana planned great costumes for us -- we came dressed as a doctor and nurse, with scrubs provided by Darrie. (We learned that Darrie outfitted us in the Versace of scrubs -- very high quality!)
Here we are...off to Winship Cancer Center!
When we arrived, our LPN Michelle took one look at us and asked us what we had on. We proudly declared -- It's Halloween! As we got back to the Clinical Trials area, Keino (who is at the hub of everything) also gave us a quizzical look and then realized these were our costumes! We thanked the great team for all they do for us with a big bowl of candy - which all seemed to be enjoying as the supply dwindled considerably over the course of the afternoon.
Everybody has given us high marks for creativity-- Darrie went so far as to make us official-looking name badges and my sister-in-law Margaret lent me a lab coat. Deana and I have found that walking around the hospital dressed like this is a VERY different experience from being in everyday clothes. It really lends credence to the idea that we make a lot of judgments based on visual cues.
Now for the important stuff -- Deana's numbers are terrific. Her hemoglobin was 12.7 -- this is the highest it has ever been. We were so excited -- lots of Aggie Whoops and some high fives too. On this visit, Deana had her quarterly infusion of Zometa - a drug that helps to maintain her bone strength. (As a reminder, we have been exceptionally blessed that Deana has not had bone involvement -- many MM patients do.)
The only new thing to emerge today was the need for additional fluids. Although Deana's creatine levels are in the normal range, it is advised that she be on the higher side of normal and this requires more fluids. If you see Deana, ask her how much she's had to drink that day -- and by drink we mean water or something similar.
When Deana and I were talking yesterday she reminded me that she had set a goal to be the best MM patient ever. She's clearly achieving that and more. Again today we were told she is the rock star of this trial, that everyone is so excited about her and that so many people want to meet her. Our awesome coordinator Kathy asked Deana if she gets tired of hearing that she's the rock star -- and we both quickly shouted, "Absolutely NOT!"
Deana has also been so incredibly generous in speaking to other patients and assured Kathy that she is always glad to speak to anyone who wants to meet or talk with her.
Needless to say, I am VERY PROUD of my sister. She is BTHO MM every day.
Deana flies back to Pittsburgh in the morning. I always hate to see her go. I told her that it still stinks that she has cancer, but selfishly, I like getting to spend this time with her.
For all the love, support and prayers we receive from everyone on our team, we remain grateful.
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Photos from today:
Here's my super brave sister - she's always laughing and smiling, even when significant amounts of blood are being taken.
Deana requested I share this and let our team know that this tray represents $35.
I am very happy to see that Deana treatments are excellent for her and give great results. Always impressed to see your great family spirit, value and mutual aid. For myself, I was diagnosed with NHL lymphoma in 1991 and I am now in complete remission for 25 years of that cancer. In April 2011 I was diagnosed with 'AL amyloidosis' in my liver and had 8 months of chemo plus a ASCT (transplant) in 2012. I am still in complete remission since 2012 of this non currable and rare disease, our medical treatments are very similar to multiple myelona. Deanna continue to have good health! and great determination in your fight against the disease!
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