Tuesday, September 18, 2012

Tuesday-Bone Marrow + Enrollment in Test Program

The morning started with a bone marrow test. Pain is involved as a hole is bored in one's pelvis and thick red marrrow is sucked out via large hypo needles. A bone sample is also tested for size. If not large enough, more bone is collected via a cute little T-handle boring tool. Obviously, dread is one of Deb's common emotions since she has bravely endured many of these procedures and knows what's coming! As usual, she took a Fentenyl 'lolly-pop' to help ease the pain along with several pills. The procedure was delayed for some time allowing everything to fully kick in. As a result, I got to sit in the hallway this morning with a very happy drunk! Boy, was Deb fun to be with! She greeted everyone and was super chatty. Wish you could have been at the party with us.

After the bone marrow, we headed over to the eighth floor of the clinic to meet with the Research Nurse to go over the legal paperwork for officially entering the Natural Killer Cell test program. The actual agreement was 18 pages. Then we got printouts of all the chemos and drugs to be used.

We got a master schedule that is similar to a rocket launch countdown. Days prior to receiving the cells Amanda donated are negative numbers. The actual transplant day is day zero. (Oct 4) After that, days are positive...sort of a T minus x, like on the NASA launches.

Day zero is Oct 4th. Anyway, the schedule has the procedures, drugs, and tests to be done. Deb gets chemo on days -9,-7,-6,-5,-4,-3,-2. Amanda's cells get 8 days of expansions starting on Sept 25th (day -9). The NK cells within that expanded collection of Amanda's cells are harvested on Oct 3. Deb gets them after Dr van Rhee's lab gets them and treats them on Oct 4th.

We also got instruction in giving Deb shots (ourselves). Thirteen days worth. Seems like the insurance requires her to 'shoot herself'. Guess if we can give infusers, we can give shots. Anyone want to be our practice victim?

Then after Deb's day zero infusion of the expanded cells, the assumption is that it will work. Dr van Rhee has special labs scheduled on days 1, 3, 5, 7, 9, 14, 29, 90, and 180. Our presumption until we hear otherwise is that we can be home in Georgia during the intervening days. May it be a success and may we live happily ever-after!

If this treatment test is fully developed and becomes approved, it could revolutionize the treatment of many cancers! Deb's participation will add to the body of knowledge and help many, we pray!

So, back to today. After we got the papers signed,we headed down to the fourth floor to get today's labs and meds. A lab tech from Dr van Rhee's lab was standing in Deb's room waiting for the handful of test tubes of Deb's bloods. Dr van Rhee had been calling around following our progress. It is wonderful to be cared for so well!

Today as Deb and I were sitting 'in isolation' because she has the virus, I looked around the marvelous facility we were in. I was thinking about the level of care she was receiving. I was pondering the expenses that our insurance and research funds were covering. I was overwhelmed by the help and support we have received from many of you. Thank you! We are blessed beyond measure!

On another note, LWC (Little White Car) got a bloody nose Saturday morning as I was pulling into the clinic parking deck. The huge pickup truck in front of us suddenly put it in reverse and backed into us. It got the grill, hood, both headlights, and both fenders, but barely missed the radiator and engine. Therefore, it is driveable but not at night. So, in my spare time I've been dealing with police reports and insurance. We hope to get LWC repaired and in better shape than ever.

As I write tonight, Deb has a fever, and we have three infusers for the night. Pills in the night. Swollen right jowl that had previously gone back to normal. A sore butt with a huge pressure bandage. Other than that, everything is OK!

Blessings all!






1 comment:

  1. Thanks for a detailed report. you guys are in our prayers often. Dorie is praying for Israel's salvation.

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