Right before our first round of chemo....look out Leukemia you're in for a fight!

Susie Roof

First post: Mar 16, 2017 Latest post: Dec 28, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

On Thursday, March 9th, prior to a planned weekend getaway in Palm Springs, CA with Rob, Ashley & Kurt (Susie’s husband, daughter, and son-in-law), Susie went in to see her general practitioner for a check-up and some blood work due to some recent bruising (approx. over the previous two weeks).  As she said, she needs to go in and ask the doctor why she “looks like a banana!"  While on the way out to the desert, the blood work results came back and she was told to head to the ER.  They re-ran the tests to ensure it wasn't lab error.  Results were confirmed, her platelet count was 10,000 and the average should be 150,000-400,000.  Her white cell count showed 15% of the usual 4 types of white blood cells with 85% category "other".  The doctors thought the 85% might be malignant white blood cells (Leukemia). 

The experts at Saddleback Hospital agreed it would be best for her to receive care at a Center of Excellence that has more of a Leukemia focus.  So, we (Susie, Rob, Ashley & Kurt) jumped in the car and headed up to UCLA but not after Susie was greeted and well-wished by many of her Saddleback buddies.  (Thank you Saddleback for treating her like the VIP she is!) 

We caravanned up the 405 following, Dr. Don and Fran Pratt.  Doesn’t everyone have their family friends/ Doctor provide an entourage between hospitals at 10 pm on a week night? Susie’s pretty special.

The first class treatment didn’t end with Saddleback.  When we arrived at UCLA, the Emergency Department and Hematology & Oncology teams were already waiting for her.  Scott’s past roommate and medical school friend, Rameen Moridzadeh, who is a second year Vascular Surgery resident at UCLA, called all of his contacts (and after hours I might add) to ensure she would be greenlighted through the ER and set-up for excellent care. 

At some point early morning on Friday, March 10th Susie was moved from the ED to her new residence on the Hematology/Oncology Floor 6E.  Scott and Caroline (Susie’s son and future daughter-in-law) flew in from NYC around 11am and essentially joined the Medical team at UCLA.  Having a doctor and fourth year medical student in the family is really paying off! Their experience and expertise is invaluable. They know all the right questions to ask, are keeping Susie’s doctors and providers on point, and are breaking down complex medical theory into essentially word-pictures for the laymen in the room (myself, Dad and Kurt). Plus, having our core crew of six together just felt good and was what the whole family needed as we start on this endeavor.

On Saturday, March 11th Susie’s diagnosis of Acute Myeloid Leukemia (AML) was confirmed.  More details of her diagnosis will be known within 2 weeks when the full results come in from her bone marrow.  Susie’s buddies, Dr. Ed and Lori Block, came for a visit and all of Scott’s West Coast medical buddies. The rumor is Susie is setting records for visitors and walking laps on 6E.  15 laps is equal to 1 mile and of course, our little goal-oriented power-house is averaging 5 miles a day. Some of the hospital staff are getting motivated to walk more based on her performance. 

­­As usual, she makes friends wherever she goes and has started to get to know the rest of the 20 Leukemia & Lymphoma patients on 6E and their families as well as their wonderful caregivers. Although Rob, who introduces himself to everyone as Susie’s “trophy husband” takes some credit.

Sunday, March 12th, the doctors decided it would be reasonable for Susie and family to make a jailbreak for an hour of sunshine as long as we stayed on hospital grounds.  Let us tell you, it was just what the doctor ordered - if you know the expression! We were all giddy as we rushed her and “Ivy” her IV pole down the elevator. This little hiatus is apparently something the 6E caregivers NEVER see but because Susie is SO healthy (minus the cancer part) the doctors made it happen.  

Monday, March 13th, Rob, Ashley & Kurt returned to OC. Scott had to fly back to NYC (but is following care closely by phone/email/facetime/text). Caroline held down the fort for Susie’s last day of tests prior to chemo therapy.

Tuesday, March 14th, joined again by Rob & Ashley, we officially begin chemo today the doctors call it the standard 7 Plus 3.  7 days of some big stuff but as Rob says, “Tell the Leukemia gods to prepare for 7 days of hell – this will be a beat down.”

Despite diagnosis, Susie maintains her can-do, positive attitude and is keeping everyone around her in great spirits.  Who gets diagnosed with Leukemia and keeps everyone else calm!? She’s amazing.

All the texts, emails and messages are incredibly appreciated.  We all feel the love and support.  Please keep the prayers and well wishes coming. Only good vibes here!

More updates to come.  Lots of love to you all!

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