Day -4: Rainy day + Mr Sam for supper

This morning we had rain showers as we went to clinic. It was 'fall' cool, so Deb was glad to have her bright-orange go-to-clinic coat.  Weekends are so slow compared to week days. They don't even charge for parking on weekends and the clinic only had a handful of folks.

Our nurse supervisor, who is an Arkansas Razorback fanatic, had her 'after game' display. It showed a large red Razorback hog laying on his back covered in band aids with hypodermics stuck all over. She enjoys putting her display up every weekend to entertain the patients. If you are not a football fan, Arkansas lost it's coach to a major scandal just before the season opened. Then, the star quarterback got hurt. The season has been a disaster. These folks really are Razorback fans here!

Deb's labs came back with excellent results but she had to have a unit of blood. Kristen, Dr van Rhee's APN assistant, spent a lot of time with Deb. She is making sure everything is going on-track while Dr van Rhee is back in Holland. She said he is planning on participating in Deb's Tuesday pre-infusion meeting via telephone on Tuesday.

Today Deb ministered to a person in great distress. It seems the more Deb is hurting, the more her Godly character shines through. November 23 will be 38 years of marriage for us and I still am being surprised,  amazed, and so proud of Deb!

Because of the meds, Deb needed to come straight home after clinic. I asked what she wanted to eat today and while she slept, I made her a supper of pork loin and gravy, home made mashed 'taters, baby lima beans, and a pear salad. Late afternoon she woke up and just as we were beginning to eat, the doorbell rung. It was our condo neighbor, Mr Sam. Wild guess, he is 75-80 and lives alone. He has to use a rolly cart to get around and is always so glad to see us. He lived in Augusta 50 years.

We invited him to join us and he ate a good supper, talking all the while. We enjoyed his company. He was raised in the NE corner of Arkansas near Blytheville.  He worked on the Mississippi River on a big barge that had a huge steam powered 87' arm and bucket for scooping sand and gravel out of the river. During WWII years his father worked at Oak Ridge, TN as did Deb's father. While there, Sam's older brother got a contract to repair typewriters and calculating machines. Sam learned the trade assisting his brother. After WWII, Sam enlisted in the Marines. The Korean War was raging by now, but because of his background in typewriters, they gave him more training on teletype technology and he spent the service time in North Carolina. His wife was from between Florence and Darlington, SC. He was able to spend a lot of time with her family. After the Marine stint, he moved to Augusta, Ga and operated a typewriter and business machine store. He built his wife a beauty parlor which is now a bank branch. He is proud of her former shop building.

While in Augusta, the government constructed the Savannah River plant which had over 40,000 employees at one time.  Sam would make copies of building and engineering plans for the site and for projects at Los Alamos for the engineers. He had a machine that would make copies up to 24' long. So, Sam got to support Atom Bomb making at Oak Ridge, and Hydrogen bomb making at Augusta. He said that's where he first learned of the dangers of alcoholism. The most skilled employee at making the large prints on a clear plastic would lose it on these precise jobs and go on a multi-day drunk. He apparently could not deal with the pressure. The drunk's wife begged Sam and the staff not to bring him any booze because he would stay drunk as long as he could get whiskey.

Sam used to golf and fish a lot. He had a cabin on a lake in SC and his stories of trot lines and fish baskets reminded me so much of fishing with my grandfather.

After his wife died after 47 years of marriage, he left Augusta and moved to Arkansas where he re-married. His second wife was a school friend that he had grown up with. They had stayed in touch through annual school reunions from their small community school. Mr Sam had also been friends with her late husband. They operated an office supply here in Little Rock until retirement. They sold their big home and moved into the condo for retirement. She died a few years ago.

Mr Sam wanted us to know about his trip next Thursday-Sunday. He and his step-son are flying to  Washington, DC for a family wedding.

He held Masters tickets for many years and has kept us in Augusta/Masters magazines.

Tomorrow repeats the past few days and we are staying hunkered down avoiding any source of infection that could hinder Deb's infusion of Natural Killer Cells on Thursday.

Blessings!

Day -5: Saturday-Dr van Rhee gone, Liz goes to clinic

Liz

Deb

Deb shows Liz how to interpret the labs

Today our condo neighbor Liz went to clinic with us. She learned her way around and that helps us by giving Deb a near-by sub for Vern in case of sickness or emergency. Thanks Liz!

We sat in the cluster today for the first time with classmate Val from Virginia. He was glad to meet us and learn about our Natural Killer Cell progress. He is very knowledgable about his condition and various treatment protocols.

Val reported that he has not had as good medical care in Virginia, where there is an air of superiority about the medical system there. He has been interviewing local oncologists to work with him and to coordinate with the UAMS staff to care for him. He has his fifth interview soon and is not happy with what he has seen. His own GP doctor of twenty years basically told him he will not even do lab work for him when at home. Val also was disappointed by the care from the famous Johns-Hopkins Institution.

Val was amazed to hear of how caring Deb's own Georgia medical staff has helped her. For which we are so grateful!

Deb got her designated chemo and when the labs came back, she needed a unit of blood.  Still,we got out by noon! Deb was woozy by now and barely able to walk unassisted due to the pre-meds she got to help her receive the blood gracefully. So, a light lunch and then home for a long nap.

As we left the clinic, we checked in with van Rhee's assistant-APN Kristen. She told us that Dr. van Rhee had gone back to Holland to care for his 83 year old mother who had fallen. He probably will not be back in time for Deb's day zero infusion, but Kristen assured us that Dr van Rhee's A Team would be on duty and caring for her.

Asked if that upset her, Deb replied that "God is still in control."

Amen!

Blessings!

Day -6: Friday

We drove the newly repaired LWC to clinic this morning. She was glad to be back with us! We've become very close!

Deb began today about 6 on the Woozy-meter. She had the entire 2 liter infusion overnight. The bag-drag is so inconvenient. Think of sleeping with an electrical pump noise pulsating every few seconds 24/7. Try rolling over only to almost snatch the line out of your neck, which is attached to your flesh with stiches! Bathroom? Trying to get dressed? Remember, the 3 foot line hooks you to a heavy bag. Just think of it as a body anchor!

When we got to the clinic, the reward for having completed the 2 liter infusion was getting another one hooked up! Yippee!

Sandra gave Deb excellent care. Because Deb is on this high-interest Natural Killer Cell test, all the nurses are using extra care to make sure all the meds and labs are as directed in the doctor's orders. For that we are so grateful!

Tomorrow our neighbor Liz is going to clinic with us. We are so looking forward to spending some time together.

Blessings!

Day -7: Loads of chemo, hard day for Deb + LWC at home

We were supposed to get a call from the scheduler if any changes were to happen. We got no call, so we showed up about 8:30 am for our 9 am chemo infusion appointment. Deb was getting settled into the large special chemo-recliners right at 9 am. At 9:05 we were handed the new schedule which showed that Deb was to be at an MRI at 9 am. I quickly called MRI and told them we were coming and to hold our spot. (MRI is a tightly controlled asset and is tightly scheduled)
We scurried downstairs as fast as Deb could go, which was pretty slow due to her feeling so bad. After Deb signed in, she had a few minutes to chat up our bud Troy. He is such an encourager!

After the MRI we headed back to our assigned cube and began a full day of labs and chemo. We had multiple APNs check out Deb. Deb is very much being watched and monitored by various folks. We can't imagine better care!

Here are the chemo's and days scheduled. Note that meds often have 2 or more names just to add to the confusion:

Bortezomib: -days -9,-6,-2
Mesna: -7,-6
Cyclophosphamide: -7
Dexamthasone: -6,-5,-4,-3
Fludarabine: -6,-5,-4,-3,-2
Interleukin-2: 0,1,2,3,4,5,6,7,8,9,10,11,12,13

Deb had a very difficult day. When we were released I rushed her straight home and she went straight to bed. After she was settled down, I headed out to the body shop to pick up LWC (Little White Car) She looked very good after the new parts and paint were added to her front end. I had asked for a bid on a total new paint job after insurance covered repairs and was quoted 6K, which I quickly declined!

LWC was so happy to come home!

Before

After

Tomorrow is day -6

Blessings!

Day -8 : Weds-Dr van Rhee + news

Crocheting in the waiting room

The busy day started with 7:30 am labs on the 4th floor, then up to the 8th floor for APN and doctor visits. Deb's line in her left arm has been acting up and required much attention over the past two weeks. That, among other items were looked at today. Kristen, the APN spent a lot of time looking Deb over and detailing the coming days, confirming meds, and future schedules.

When Dr van Rhee came in, he and his Taiwan shadow doctor spent a lot of time with Deb. Deb finally asked the big question: "Dr van Rhee, are you going to let me proceed with the Killer Cell program?" He said with a twinkle in his Dutch eyes and a big smile, 'Yes!'

The 8th floor was slammed today. They saw over seventy myeloma patients today!

Deb's medical records

Over the last months Deb has grappled a lot with the opportunity before her. At one time she was seriously questioning whether or not to participate. As we have learned more we have come to really appreciate being qualified for this very limited medical test and actually participating in it.

The exam by Dr van Rhee showed no physical sign of the large cancerous mass on her breastbone! PTL! In order to absolutely establish a baseline of Deb's exact condition prior to and after the Killer Cell Infusion, Dr van Rhee ordered a host of tests and procedures to nail down the before and after. Our schedule for the next week or so suddenly filled up. In fact, after Dr van Rhee, we rushed home to get the cleaning service started on the condo. Then we hurried back to the hospital to get a line put into Deb's neck.

While in the waiting area while waiting for Deb's line, I met a new classmate couple, Mr and Mrs Foster, from Perry, Ga. Mr Foster was a B-52 D tail gunner for a career. He works with JSTARS simulator training now.  For Vern's relatives, no, he is not related! He's from up North. (Maternal family name = Foster)

Shelley and Bonnie

Then I was approached by two women who knew me from the blog. Shelley and Bonnie had previously met Deb and recognized me. About that time, Deb came back to the waiting room accompanied by the nurse who assisted in the line procedure...whose husband is a myeloma patient also. They had lived near Dallas, Texas, when he came down with myeloma. With a young family and myeloma, they packed up and moved to Little Rock. She got a job at UAMS and now he gets treatment in  the same hospital where she works. He has a similar high-risk case and she was extremely interested in the Natural Killer Cell program that Deb is enrolled in.

There was just enough time for us to grab the car and head over to the myeloma clinic to get the troublesome PIC line removed. At that point Deb had two connections in her neck, two in her left arm, and one port in her chest. Deb..a very 'connected' lady!

Soon we were in the clinic where the line was removed.

By now, we were exhausted, so we headed home for some homemade spaghetti we cooked last night. When we opened the door to the condo, there was an overwhelming smell of the cleaners used this afternoon, so Deb stayed outside while I got doors and windows opened to air out the condo.
Supper, cleanup, rest. A very long and hard day!

Tomorrow we start 07:30 am clinic times so Dr van Rhee's assistant can lay eyes on Deb often.

Deb commented today: 'this may or not work, but if it doesn't work, it won't be because everyone didn't try!'

Amen to that! Everyone has bent over backwards to serve us. Hat's off to UAMS!

Blessings all!

Tuesday-Countdown begins!

One of the most important countdowns in our family's history has started. We are on day -9. Tomorrow will be day -8. Launch day zero is when the Natural Killer Cells are infused back into Deb.

So, today, day -9, Deb had special labs and started a new round of chemo. She spent the majority of the day in bed in the clinic and held court with many nurses and APNs. In the waiting area, Israel had many questions and was very happy that he got a good report today. He is watching Deb's progress very carefully.

Weds we have extensive labs and then meet with Dr van Rhee. We hope to hear more about what we have heard concerning the test case ahead of Deb. The clinic nurses and APNs were abuzz over the report about how pleased the staff was in the extremely high count of killer cells in the blood just back from Baylor that was expanded for the man ahead of Deb.

We talked to a senior APN who was saying that the use of stem cells to treat multiple myeloma put UAMS on the medical map. If this Natural Killer Cell process being tested works well, cancer treatment will be revolutionized. Multiple times this week I heard on national TV shows references to tailored cancer treatments using dna information to medicate based on the individuals makeup. Guess where that was pioneered?

Tomorrow, day -8,  begins the expansion work in Texas at Baylor University where Amanda's cells will be expanded.  Deb has chemo on days -7,-6,-5,-4,-3.-2,

This whole medical test is being taken very seriously by Deb and me. We are having a special cleaning service come into the condo tomorrow to help sanitize it. Deb will be masked and be washing hands often. We will be very careful with food. We want Deb to be protected from exposure to even ordinary bugs since she is now in process of losing her immune system and we want her as healthy and strong as possible as we approach day zero.

Blessings!

Monday-Getting ready for action

Sunday was a rare event in Deb's treatment...a day off! First one in a month! All Deb wanted to do was sleep and rest. That's just what she did.

Monday was back to the clinic getting lots of labs. Many tubes of pure blood were needed.  Deb's right arm, the one without the PIC line installed, would not cooperate. The nurse finally felt so bad sticking Deb repeatedly, she asked if she could call in David, the pro at getting needles in impossible veins. So, with Deb's OK, David was called and in just moments, he had filled ten tubes of blood. Deb felt nothing! David has been a phlebotomist for over thirty years! We are so grateful for his skill.

Tomorrow begins the chemo in preparation for the ultimate-the infusion of Amanda's Natural Killer Cells on Oct 4th. That makes tomorrow day -9 on the countdown to Oct 4th. See previous posts from last week for the timeline.

Tonight is one infuser, then back in clinic at 9 am.

Blessings!

Saturday-Cassy, Crochet, and a B-29 Bomber. . .

Cassy Sims spent the day with Deb before heading back home to Atlanta. She stood in for Vern at the Myeloma Clinic. So, thanks to Cassy, Vern got a day off.

Redbird, our airplane, has been inside a hangar for a month. Vern headed out to the airport to service Redbird for our eventual trip home.

As I got out of the car at the airport,  I heard the unmistakeable roar of big round airplane engines. I was amazed to look up and see the world's only flying B-29 bomber, Fifi,  like the WWII bombers that helped win WWII and were later used in the Korean War. I barely got this distant photo before it went out of sight behind a hangar. Fifi is operated by the Commemorative Air Force.

Back to Redbird: Because her battery had not been charged in a month, it was time for a flight. A local fireman, Adam, who works at the airport on the weekends helped me service Redbird so I asked if he wanted a ride. Adam jumped at the chance, so off we went.  As we departed the traffic pattern, we flew by the B-29 bomber about a mile away.

First, up the Arkansas River to Petit Jean Park. It is next to a lodge on the Rockefeller Cattle Ranch. A major antique car show was going on so we circled the show a few times. Then, down to Hot Springs, across the mountain range that goes all the way into Oklahoma. Here's what  Wikipedia says about them:
The Ouachita Mountains (/ˈwɒʃɨtɔː/WOSH-i-taw)^[1] are a mountain range in west central Arkansas and southeastern Oklahoma. The range's subterranean roots may extend as far as central Texas, or beyond it to the current location of the Marathon Uplift. Along with the Ozark Mountains, the Ouachita Mountains form the U.S. Interior Highlands, one of the few major mountainous regions between the Rocky Mountains and the Appalachian Mountains.^[2][3] The highest peak in the Ouachitas is Mount Magazine in west-central Arkansas which rises to 2,753 feet 

There was a forest fire burning across the area which truly fascinated my fireman friend who had never seen such a fire from above but said it was the most feared of fires to fight on the ground.

As we flew over the mountains, Adam pointed out a Care Station that he works at every year. I asked about that and he said that there is a annual Super-marathon 100 mile race through the mountains and as an EMT/Fireman, he works it. He said world class runners come from all over the world to run it. 100 miles???

Hot Springs is the site of one of the first National Parks in the nation. It is also the home town of one of our faithful friends in the airplane group back in Peachtree City, Paul LeDoux. Paul has followed 90% of our trips back and forth and has helped us load and launch as well as unload and put the plane away.

After Hot Springs we headed back towards Little Rock. We circled Adam's house. He had called his wife before we left and when we circled his house she came outside and waved.

Then we landed and put Redbird away. The local airplane group in Little Rock was having a cook out, so we had lunch together. What a wonderful morning off! Not a minute in the hospital for Vern!

When I got back to the condo, Cassy and Deb were crocheting. They have done crafts for about thirty years. Deb reported on her clinic visit and today she had good labs and and needed no infusers!
This was the best feeling day Deb has had all month!

As we sat in the condo visiting before Cassy had to depart, the B-29 flew overhead and we ran outside trying to get a view of Fifi.

Why am I making a deal about Fifi?

A few details: Cassy and her husband Jeff and Vern went to high school together. Cassy's father was my high school principal for a year. Dr Burt then served at the county office. The last visit I had with Dr Burt was at Cassy's house a few years ago. Dr Burt and I talked about what he did in WWII. He was sent to B-17 gunner school, assigned to a B-17 bomber and crew, and headed for the war in Europe. Then VE day came and his trip was cancelled. He was then sent to B-29 gunner school, assigned to a B-29 crew and got to the west coast headed to the Pacific theater. Then, the Japanese surrendered and these orders were cancelled!

So, he got out of the service and went back home. At one point, he worked at the old Bell bomber plant at Marietta, Ga building B-47 jet bombers. Some of those were based at Schilling AFB in Salina, Kansas where my father worked. I saw many B-47's. Dr Burt got tired of the factory life so he went back to school and entered education. So, there's the connection.

More on Fifi:
http://www.youtube.com/watch?v=c7PpA4WxY0c

http://www.cafb29b24.org/index.php?option=com_content&view=article&id=132&Itemid=487

Friday-Cassy visits Arkansas

 Chief Angel Cassy Sims from Georgia came out for a visit. Here she is in the Hope Garden outside the MRI facility.

 Cassy observes the nurses and APNs as they care for Deb.

 APN Peggy warns Vern to take a good photo if I take one at all. She altered some of Deb's meds today to make life better.

Nurse Cathy draws labs from Deb's PIC lines

Deb was greeted by a classmate who had just returned to campus after a short visit home.

Tomorrow Cassy is escorting Deb and Vern gets a day off! Hurray! Today Cassy got the full tour of the facility so she now knows the ropes. Hopefully, it will be a simple day with mostly labs. Next week we approach the chemo leading up to the Natural Killer Cell transplant.

Hope you have a great weekend! It has been down in the high 40's each morning this week. Sure beats that 100 plus weather. "I can fell fall in the air."

Thursday-Nutrition

Deb had her normal 9 am infusion center visit complete with labs. Her arm PIC line has been acting up and sometimes the nurses need to give it a 'roto-rooter' treatment to keep the line flowing. Deb has really been feeling puny and thinks it is due to one of her meds. Tomorrow she is going to ask for a reduction in it to see if life improves.

While we were waiting today, Israel wandered over for a visit. He is having liver troubles and came from NYC for a one day checkup and is having to stay indefinitely. Welcome to myeloma! Israel always has a book with him and normally sits alone and reads. He had a different book today and I asked him what is was since the cover was printed in Hebrew. He said 'The Psalms of David.' I said I love the Psalms and read them often. His jaw dropped! He asked why would a Christian read the Psalms? I told him I read all the old testament. He could not believe it, so I quoted Psalm 1 to him in English, apologizing because I cannot do it in Hebrew. We had a nice conversation. Hopefully, to be continued!

After we left the clinic, Deb wanted something different for lunch. We headed downtown for a nice slidder lunch for Deb. Then we went to a health-food/gluten-free bakery. We picked up a collection of goodies for Deb. We also try to make an occasional smoothie at home out of organic components. We are very aware of the importance of proper nutritional support. We can't always get it, but we try!

Tomorrow Deb gets a lung treatment to help prevent pneumonia. Then we have the labs in the clinic. We may have a visitor coming into town, so more on that tomorrow if it happens.



Blessings!

Weds-Labs and infusers-Not feeling so good

 

Deb and Peggy, the APN for the day, commiserate about how life is for each of them. Peggy is very artsy and she and Deb take care of their health concerns, then talk arts and crafts. Its a good diversion for both of them!

Deb has the right side jowl swollen. We have been told it is her lower salivary glads. She is to chew gum to work the gland. It also makes Deb want cold food and drink. Tonight she wanted a cold tuna salad.

Deb has had a low-grade fever most of the day. We came home with infusers of antibiotics again. Of course, these tear up her gut.

So, she doesn't feel good and has mostly laid around all afternoon after we got home from the clinic.

We've met some new Georgia classmates who are long-term friends of several of our friends. Welcome Joe and Cornelia! Looking forward to a lasting friendship!

Regarding LWC, after I got Deb lunch and settled down at the condo, I had an appointment with the insurance adjuster and got LWC to a repair shop and got a rental car until LWC is 'well.'

Tomorrow is like today-9 am in the clinic!

Blessings all!

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!

Monday-3 docs, 6 nurses, and a bag of platelets!

Ever wonder what student doctors and nurses study? These titles are what they study out here. Every now and then I run into the medical school bookstore for a small item and enjoy perusing their texts. Everything you want to know about your Gizzard!

Deb was a busy gal today. She went into the clinic at 08:30 am and got labs pulled. Monday mornings are always 'needle day.' They draw all sorts of tubes of blood looking for infections among the clinic population.

At 10 am we had to go to the eighth floor to see Dr van Rhee. We saw his assistant and three nurses in getting Deb ready for the Natural Killer Cell test. Tomorrow she actually signs the papers.

Dr van Rhee made his final physical and medical test evaluation of Deb's condition and determined that she is qualified for the Natural Killer Cell test program. He and another doctor, along with a team of research nurses all had a strong look at Deb's test results. 

We left Dr van Rhee and had a bite of lunch. Then off to the spine center and an appointment with the ENT. Because Deb's cheeks and throat had such extreme swelling a few days ago and her ears almost swelled closed, the myeloma APN wanted another set of eyeballs to check Deb out. The doc there thought the meds and protocol that the myeloma clinic was using was appropriate. So, back to the clinic for the platelets that had been ordered. Several hours later, platelets and infusers in hand, we headed home via the nearby Kroger. Deb had an overwhelming  desire for some of my famous fish. Fish cooked and eaten, infusers hooked up, she fell asleep. Sleep tight Debs, until the 8:30 appointment in the morning. It's her favorite: a bone marrow exam!

By the way, some of you have sent cards to the Markham House. We now have our own condo now and do not stay at the Markham house anymore, although we recommend it to classmates. They forward mail to us. If you need either our Little Rock or Georgia addresses, send an email requesting it to:  vern   @   mindspring.com

We are security minded.

Blessings all!

Friday: an extreme day for Amanda and Deb

Tools of the trade

Scene of the action

The Quinton Line

Divide and Conquer: Deb needed to be in the MRI unit and in Infusion-4. Amanda needed to be on the second floor new hospital Interventional Radiology section for line placement and then go immediately to the Apheresis Unit at the same time as Deb's appointments.  After getting Deb to MRI, Vern headed off to be with Amanda.

Deb had a Quinton line installed back almost three years ago when we began this journey. Today Amanda had one installed. The difference: Deb was extremely sick while Amanda is healthy as a horse. The surgical suite was all laid out with sonogram and X-ray equipment in place so the line could be accurately placed in the right spot. They showed Amanda how the process would work then gave her some local painkillers which did not work. Amanda endured the pain in spite of multiple shots of painkillers. She even felt the two stitches that held the line in place. She was draped during the procedure which triggered her claustrophobia.

We had several rounds of paperwork as it is rare that a well person is processed in a hospital on behalf of a sick patient. There was confusion and a few errors.

Once in the Apheresis unit, the head doctor, Dr. Fox, personally supervised Amanda's care. She is a very senior doctor and has met the inventors of the machine and process used to extract certain parts of one's blood while returning other parts back to the donor. Her assistant physician was an Emory Grad, so we talked Atlanta-talk with him.

The Apheresis machine used is basically a high-tech centrifuge which spins the blood. Each component of blood has a different unit weight so all that particular component accumulates in one area.

Dr Fox said the inventor of the concept of separating blood had a son who needed platelets. The father (the inventor) built a prototype in his garage. He got the basic concept from studying milk separators. The son's doctor gave him expired blood to use in tests. Eventually it worked! Since he worked for IBM, soon IBM began manufacturing the units and Apheresis was invented! Now it is used everyday in medicine. Modern units have gotten smaller and more efficient.

The unit used for Deb and Amanda has yards and yards of clear plastic tubing which are circled in the unit base where the centrifuge is located. The tubing is threaded all around the machine and has all sorts of electronic controls. It reminded me of my grandmother's old Singer sewing machine in the way the tubing is threaded.

Once Amanda's blood began circulating, she became extremely cold. We kept putting warm blankets on her but still she was freezing. Because of the location of the line, Amanda had trouble moving her neck and tried hard to lay still to avoid additional pain. The nurse noted that Amanda's blood began clotting immediately in the tubing so Amanda was given an 81 mg  children's aspirin. It took affect almost immediately and we saw why an aspirin is suggested anytime a heart attack is suspected. It takes immediate affect!

Final collected cells-The labels showed from Amanda and to Deb

. A bag of liquid love!

It took about three hours to collect the cells. When Deb was finished in the clinic, Vern took her home then went back to be with Amanda. Amanda had to leave the line in until the bag of selected cells were examined by Dr Fox in her lab. She used a cell counter to determine the required number of cells had been collected. Otherwise, Amanda would have had to return the next day for more collection. Fortunately, Dr Fox said the quantity and quality of cells was good! Amanda was delighted to be done! She then had to wait two hours before getting the Quinton Line removed. That process was handled by Nancy, the nurse who had been caring for Amanda.

After pulling the line from Amanda's body, Nancy held hard pressure against the wound while it began clotting and sealing itself up. Amanda was given severe restrictions about lifting and holding heavy objects, like her children, for several days. I brought her home after buying her a milk slake and she slept the rest of the afternoon.

Poor thing! Amanda endured a lot of pain in this attempt to help her mother get relief from Deb's otherwise incurable Multiple Myeloma cancer. Thanks you, Amanda, for literally giving your life blood to help Mom!

Speaking of heroes: Amanda's husband Jon and his father David are heroes! They have kept two active kids all week and we bet they will be glad to see Amanda when she returns home tomorrow!
It will be difficult to respect the weight restrictions when Amanda gets home.

Special thanks also to travel angels Dave and Julie who have managed Amanda's travel needs.

Quick Update from Amanda

Mom and I had a lovely morning at the clinic. We felt it was about time that Dad had a day off. We were in isolation again today, but Mom's labs were all continuing to trend upward. She needed platelets and additional infusers of antibiotics to keep the infection in check.

Tomorrow is a long day for both of us. Mom has a full schedule with two MRI's plus her clinic appointment. I'm sure Dad will be running around, since I'm having the Quinton installed at 7:30am and Mom's has an MRI at 7:45am.

Interesting Fact:Platelets are gold they turn green if you take birth control

So grateful to all the blood product donors that have helped mom

The first thing every nurse does is draw blood- it's like their greeting

Mom's Homework-infusers

Weds-ParaInfluenza-III, Israel, Aphereisis

Click on pix to enlarge

Deb's line which is re-bandaged weekly. The infusers hook into the two lines. Deb also has port in her chest wall when needed.

ParaInfluenza-III.  Yep-that's an additional malady Deb has contracted. She was ushered into a private closed-door isolation treatment room. The nurse wore a 'zoot-suit' during all treatment. Estimated lifespan of this virus:ten days.

Fortunately, that ten day period should not interfere with Deb's next round of chemo which will prep her for the Oct 4th infusion of Amanda's expanded cells. That's the nurses opinion. We haven't heard from Dr van Rhee yet. He had urged Deb to be so careful not to catch anything; as if she controls that!

This morning we went into the clinic at 9 am. Amanda went up to the MIRT clinic on the 8th floor. Deb went into the Myeloma Infusion Center and was placed in a private treatment room. The staff tries so hard to not let this bug spread although there are many reported cases. There are only so many private treatment rooms.

Deb's platelets were below the limit and were ordered early in the day but will not be available until tomorrow morning. After we left the clinic the APN consulted with a virologist who recommended a new antibiotic and chewing gum. Yes, Deb has a doctor-recommended habit-chew lots of gum to exercise her jaw muscles to perhaps begin to ease the swelling in her face. The infusers will go tonight.

Since 'ole Vern was covering two patients on two floors, it made for some rapid movements. When Amanda came out of her first appointment, she joined me just as our classmate Israel walked in  accompanied by Chris, the Markham House driver. We greeted one another and then we got caught up with Israel's myeloma progress. He has come out of remission and is re-entering treatment. When I initially introduced Amanda to him she typically held out her hand to shake his when she abruptly withdrew her hand and apologized to him: Orthodox Jewish men are not allowed to touch a non-family women. Israel complimented Amanda for having that knowledge. We had a good visit then Amanda had to get to Aphereisis. That was clear across campus so I took her there. More paperwork, more bar-code labels. This whole place runs on labels and bar codes!

The staff briefed Amanda on possible risk factors. They gave her a tour and showed her where she would spend Friday morning. After Amanda gets a line installed in her neck, she immediately heads to Aphereisis. Then the blood products will be sent to Dr van Rhee 's lab for prep before being sent to Baylor for expansion. On Oct 4th Deb will have been prepared via chemo to receive the enhanced cells.

The Barrins-He is Natural Killer Cell test number one and doing great!

Deb will be number 7 to go through this test. Today Amanda met and had a 10 minute chat with the first man to have this test program. He was back for checkup and is doing well and taking no cancer meds! He was extremely encouraging to Amanda about her mom's possibilities. May it be the same with Deb!

Amanda saw the V for victory as she peered up at the Rockefeller Center Structure

Tuesday-Swollen face and legs

 Deb's face and legs have swollen a great deal. She has had multiple tests and drugs trying to reduce the swelling. She looked like a chipmunk that had eaten a bag of marshmallows this morning! Only one pair of her shoes was barely wearable. She spent most of the day in clinic being checked out for this.

Deb wears hearing aids. Because of the swelling, she could not wear one of them. She was given ear-antibiotics! Didn't know there was such a thing! Besides the aids, Deb's overall hearing and vision have suffered due to the affects of the chemo. It's tough stuff!

In fact, Dr van Rhee told us that it would not be right to keep giving chemo forever; there is a humane limit. He agrees with Deb that if death is inevitable, most people including Deb would like to be at home for their final days. He promised Deb that if we reach that point, he will tell her it is time to go home. Fortunately we are not there yet and hopefully not for many years. We are in a serious battle for life.

 Our new APN Tamika yesterday. These APNs are gifted and such a blessing to us.

 The 12 story Rockefeller Cancer Center is a beautiful building. I was walking down the stairs when I saw that Kawneer Corp had built the aluminum window units. I used to work for Kawneer building aluminum units like these! Deja vue all over again!

We chatted with two sets of Georgia classmates today. Good to have friends from our neck of the woods.

As we were leaving clinic today, a nurse said "Oh Mrs Darley, you should have been here! The first man who had the Killer Cell protocol was just here and is doing great!"