Family Photos from Callaway Gardens 8/12

By Jon Swindall- Amanda's husband

See www.SwindyFilms.com

Click Pix to Enlarge

Eliana, Amanda, Deb

Deb and Stephen

Deb and Evelyn

Eliana and Amanda

Trey and Evelyn

Evelyn

Stephen and Deb

Katka and Evelyn

Vern, Parker, and Deb

Eliana and Jon

Evelyn, Katka, Eliana

Deb and Trey

Deb and Vern

Trey and Parker

Evelyn and Eliana

Parker

Jon, Eliana, Amanda, and Parker

Friday-Woozy Meter = 7.5 today

 Today the APN was telling us the reason for the anti-fungal drug that was given via IV over two hours. She said that many of the worst symptoms encountered in cancer patients are caused by fungal infections. They try very hard to prevent them in patients who are approaching neutrapenia, like Deb.
The meds had Deb feeling like she had the flu and she slept much of the day wrapped up like a mommy-mummy.

Yesterday we visited in the waiting area with a man who had lost 75 pounds because of a fungal infection in his esophagus. He said it was too painful to eat.

The nurses are so kind to Deb! They try so hard to be gentle with the numerous sticks she must endure. Deb always had such a fear of needles. No more! Fearless!

Peggy, one of the senior APN's drops by for a visit. Deb is treated like a friend by the older APNs. The younger nurses are always respectful when they find out Deb is a HS Math teacher. Many of them had troubles with math and Deb gets to hear their stories.

Our cluster neighbor today was a couple who just came in from Venezuela. They had very little English and my Spanish is even less. Even so, we commiserated.

Our son Trey who lives in Belgium has been waiting to hear about the selection for the Killer cell test. He is coming to Arkansas tomorrow to visit Deb before returning home.

We had hunkered down the past few nights while hurricane Isaac passed overhead. I was very concerned about Deb getting soaked going and coming and had purchased good rain gear for her. She did not get get wet!

Better to be over-prepared than sorry!

Amanda is coming to be the donor for Deb on Sept 9th. Angels Julie and Dave are in charge of her transport. Thanks angels!

It is a holiday weekend for many of you. All days are the same in the cancer business. The hospital is much like any other business: only essential business happens on weekends and holidays. Food is scarce with only one small snack bar for the whole campus.

So, next time you drive by a hospital or nursing home, please remember that it may be your day off, but for those in the rooms, it is their life. Anything you can do to bring cheer or hope? Remember: you may be living there in a surprising and sudden time frame.

Blessings!  Be sure to read  the previous several posts to understand what lies ahead for Deb.

Weds-Back to Dr van Rhee-Schedule

Today was Deb's last day 'on the bag.'  Hooray!!!  The chemo pumps with their three foot tubes intertwined within her clothing, the alarms going off when she would roll over in her sleep and cut off the pump, the weight and inconvenience of carrying it everywhere just a foot away from Deb at all times. So good its gone for a while.

When we got to the clinic Deb was doing fine in the waiting area. When she was called back into the clinic she paused and started to pass out. I grabbed her before she fell. A clerk grabbed a desk chair on wheels and we rolled her in. It was obvious she needed fluids to raise her blood pressure. The chemo was kicking in and hitting her hard.

After the bag was removed and the meds given, we hurried over to our appointment with Dr van Rhee. Of course, we missed lunch while waiting. Dr van Rhee was seeing a new patient just before us so we understood the long appointment because we remember how we felt on day one.

Deb stretched out on the exam table and rested until Dr van Rhee and his associate doctor from Taiwan came in. As Dr van Rhee came in, he said 'it's your daughter!' Meaning that Amanda's blood tests showed her to be the best candidate for the test.

As he came in the door Deb blurted out 'How will I be doing after this Natural Killer Cell test is over? ' In his finest Dutch accent, Dr van Rhee laughed and said 'we don't know because you are the guinea pig.' He did a physical exam then hit the written reports to make sure of his plan for Deb.

The good doctor took a good while to review the timeline for Deb's treatment via the Natural Killer Cell protocol. He answered our questions. Here is his plan:

Sept 9-Amanda travels to Arkansas
Sept 10-Amanda enrolled and tested. Line installed in her neck.
Sept 13-Amanda's blood circulated thru a machine to pull out the cells needed. Blood sent to Baylor for expansion and selection.
Sept 14-Amanda dismissed and going home
Sept 17-Deb enrolled and tested.
Sept 25-Deb gets Velcade
Sept 28-Deb gets Velcade
Oct 2-Deb gets Velcade
Oct 4-Deb infused with the multiplied cells from Baylor
         -Deb-2-3 weeks of daily labs and recovery . Interflucan II treatments to super-activate the Natural Killer Cells.
Cancer gone, or enter another experimental program.

After he concluded his time with us he sent us back to the chemo clinic for a dose of a powerful chemo-melphalan. The bad side affect is that it burns the mouth and intestines, so ice and cold drinks must be taken continuously before and after taking it.

The reason for it was to help get Deb through the coming weeks prior to the Natural Killer Cells. Because Deb's cancer is so aggressive, she can't go long without something combating the cancer. It could get out of control.

Now, the entire Myeloma Clinic offices are moving from it's building to the 8th floor of the Rockefeller building where the myeloma clinic is. So, we expect some bedlam, but the schedule is determined by the blood expansion and lab time at Baylor. Dr van Rhee gave us his personal cell number so we will not get lost in the shuffle.

All the processes will be done out-patient. That means no hospitalization unless needed. Many institutions would be doing the typical treatments deb gets here in-patient (in the hospital).

++++++++++++++++++++

Prayer Specific Requests:
>Deb's descent into neutrapenia and partial recovery before the procedure
>Amanda's childcare issues
>Amanda's transportation
>Trey's visit to Arkansas before returning to Europe -this Saturday thru Tuesday

++++++++++++++++++++

If you've seen the news, you know there has been a hurricane headed our way. Arkansas is expecting huge rains and winds. I took Deb by a store to buy her some rain gear because I do not want her to get soaked later this week. I also stocked up on some groceries. Hopefully, the storm will be a non-event if we are prepared for it.

Blessings!

Tuesday-More chemo + Lung tests

Today was day four of the chemo bag with its two pumps and the three foot tubes interwoven thru Deb's clothing and into her left arm. Therefore, no showers! Bet there will be one tomorrow after the bag comes off!

Deb's labs are still pretty good although her white blood counts are headed down as the chemo destroys her immune system and she becomes neutrapenic. We expect that in a few days.

After a short nap after the morning treatments, we headed back for a test of Deb's lung functions. Deb dreads these tests more than most any others.

Before I got Deb up this morning I prepped a beef stew and left it cooking in the crockpot. When we got home after 5 pm, the condo had that delicious smell.

Trey's blood samples arrived and were processed this morning. Within 24-36 hours we should know which adult child will be the best donor for Deb.

After supper Deb went straight to bed. She is so tired!

Blessings!

Monday-a long day with MUGA + Report

We had a busy day. We had to be at the Pharmacy at 8:30am to pick up the meds needed for Deb's lung treatment to prevent pneumonia. While there we met new classmates from St Petersburg, Fl. There are so many Myeloma patients from the Gulf coast.

Next we headed to the chemo clinic to get labs, shots, and refills on the chemo bag. While Deb was in the clinic, I had an appointment with the transplant nurses and schedulers to discuss the coming events.

At 1 pm Deb had a MUGA test. This test determines heart health. It uses a huge machine that actually is a camera device that uses gamma radiation in her blood with hundreds of exposures timed with an EKG signal so that a composite photo of the heart is created when all the exposures are combined.

We have Amanda's and Stephen's blood tests evaluating the suitability as donors for the Natural Killer cells to be infused into Deb. Stephen was not a match. Trey got his samples pulled this morning and shipped to the hospital. It will take 24-36 hours to determine his suitability. Trey sent his wife and daughter back home to Brussels. He is hanging around Atlanta waiting to hear about his suitability.

Tomorrow is more of the same: Lung tests, labs, and more chemo.

Blessings all!

+++++++++++++++++++++++++

P.S. This report is posted each week.

Saturday-On the Chemo Bag-Drag again!

See yesterday's post if you haven't read it yet

This morning we were early for our 9 am appointment. Finally we were called back. There is a 'gatekeeper' who pushes a button to release the electric door lock for authorized entrants. The computer scheduling systems alerts them and is confirmed by a technician who waits for you at the door.

First step upon entry is to get vitals. Deb steps on the scales, gets sitting and standing blood pressures, oxygen saturation, pulse rate, and temperature. Then we are escorted to our pod assignment. There treatment begins. Usually my duties start also: warm blankets and ice water for the lady!

Today she had labs drawn, several belly shots, and multiple pill dosages before getting the pre-meds via IV and finally getting hooked up to her chemo pumps. By the way, I try very hard to use good taste and discretion and do not always mention everything that goes on. I will say that Deb has a huge saucer-sized dark purple sore spot on her tummy where certain shots have been given too quickly. Ouch!!!

The two pumps and chemo bags

Nurse Judy assembles and packs up the chemo bag. Note the red one...affectionately called 'Red Devil"

Judy runs the two tubes under clothing in such a way that we can get Deb dressed and undressed

Today an especially sad situation developed. A new classmate was seated next to Deb. It was a teenaged boy I'd estimate at about 18 years old. How sad to see him begin this 'old-person disease!'
Perhaps we will get to know him. The nurses quickly pulled privacy curtains around him.

Now today is probably the best Deb will feel for a month as her body is once again assaulted by the strong chemo. So, after our release about 3 pm I took her to a local restaurant where she enjoyed catfish, hush puppies, fries, and cole slaw. Then home for a long nap. Of course she is now attached 24/7 to the heavy chemo pump bag. 90% of the time she calls me and I carry the bag since it exceeds her weight carrying limit.

The next four days will be much like today. Stand by for more news!

In our parking lot we met our 80+ year old neighbor, Mr Sam,  who lived in Augusta, GA for over 50 years. He goes out in the parking lot on his trolley each day for exercise. He takes such delight in seeing his Georgia neighbors and brings us Augusta magazine and golf magazines about the Masters.

Mr Sam

In the waiting area I met a retired USAF fighter pilot who at age seventy still works at Eglin AFB, Fl developing new weapons for fighter planes. We have enjoyed flying with our hands and telling stories. He went to pilot training at Craig AFB, Al. He flew F-4s in Viet Nam. He claims that exposure to Agent Orange is probably what triggered his multiple myeloma. Who knows?

Al M., retired fighter pilot

Dr van Rhee to Deb: 'Bottom Line..You are in trouble'

Dr van Rhee to Deb: 'Bottom Line..You are in trouble

With a sober look, Dr van Rhee said those words to us today. He went through all the various treatments and meds Deb has taken and listed potential future treatments. He said Deb had had very hefty treatments yet the cancer remains.

Deb's heart has been weakened and we have a new MUGA heart test next week to determine where it stands.

We had a 10 am appointment and we left the room after 1 pm. A second doctor was with us as well as our APN Kristen.

Although Deb had not wanted to participate in the NK Protocol {Natural Killer Cell} test until more people had been though it, Dr van Rhee said it was Deb's best hope for now. I asked if his wife were sitting in Deb's position would he still recommend it? He said 'absolutely'.

This involves testing our children's blood and selecting the best match. Then that adult child would come to Little Rock for a week. They would take a special physical and then have a Quinton line installed in their neck. Their blood would be circulated through a special machine which would separate out certain cells. Then the blood would be flown to Baylor University Medical School where it would go through a process to multiply the cells. Then a special selection of the NK cells would be done. Meanwhile, Deb would go through a process to destroy her immune system so that when she receives the NK cells, they would become her new immune system. Each cell would kill off about 4 cancer cells. Later, special drug which will stimulate the NK cells to multiply again. Within a week Deb would either be in remission or have had no affect. If no affect, then other experimental treatments could be used.

Dr van Rhee said Deb is 'entering uncharted waters.'

Because Deb's cancer grew during the two weeks at home, we start a new round of chemo starting tomorrow.  We had to order in some Thalomid pills. I do not talk money much, but these 28 pills cost over $8,000! Can you believe it?

So, tomorrow Deb gets a bag with infusion pumps and begins 24/7  infusion of  VRD PACE.
We had to pick up some meds from the UAMS Pharmacy and our angel Pharmacist Carla helped us. Thanks Carla!

This afternoon Deb had an EKG. She will be doing lots of tests in the coming weeks.

So, in summary, Deb's cancer has continued growing. She starts interim chemo tomorrow. Our children's blood is being tested. One of them will give cells to be treated and injected into Deb.

The schedule for all of this has been established.
>An adult child will be here the week of Sept 10th. Child collection will be Sept 13
>Deb will be entered into the NK Program on Sept 17 with a consult and enrollment
>Deb will receive NK cells Oct 4th

Bless us all!

Return to Arkansas

After our wonderful family time at Callaway Gardens, Deb returned exhausted just as we knew she would. But, to be with kids and grandkids, she would have walked on fire! Tired she is!

I filed an IFR flight plan for a 10 am departure so I had to get Deb up and going. Since we had been away for a few days we just brought the dirty clothes with us to wash here in the condo. Sure is a blessing to have that capability.

On the way to the airport we stopped off at Vern's office and were met out front by a group of friends. We had a nice visit and Deb pulled off her hat to show everyone who now wears the hair for the family...bald Vern! We had a time of prayer and departed the office for the airport with many encouraging remarks as we left.

As we pulled up to the hangar, Redbird was out and ready to go thanks to airport angels. Thanks angels!  We loaded Redbird and then had another prayer time. Waldo led in a prayer and annointing with healing oil for Deb. Friends knelt around Deb in prayer. We all had tears in our eyes.

Then, off to Little Rock. There was hardly a cloud between Georgia and Arkansas. Tailwinds helped, Deb rested, and Vern thought about how ironic the journey was since all his life, flying around the country with Deb had been his dream. Just didn't expect it to be back and forth to Little Rock! Be careful what you wish for ; perhaps be more specific.

As I unloaded LWC, our neighbor in the condos said she had our supper ready and could she bring it over. Wow! Thanks angel Liz! Great 'taters, peas, and meat loaf!

After a short nap it was time to get Deb to the hospital for labs and a CT scan. We meet Dr van Rhee at 10 am after morning labs. Hopefully we will have good news and a new plan.

Blessings all!

Kids+Grandkids=Good Medicine

Sunday through Weds we gathered at Callaway Gardens for a family time. Son Trey, Katka, and Evelyn flew in from Brussels. Son Stephen came. Daughter Amanda, Jon, Ellie, and Parker came. Deb and Vern came, and basked in the rare time for all of us together to fellowship and face the elephant in the room...Deb's health situation and future possibilities. It was fun: stressful at times:Tearful at times: absolutely delightful!

Food Angel Dave Smoked a ham, a pork roast, and a turkey. We ate like royalty! Thanks Dave!

The staff at Callaway was informed for the reason for our family gathering and treated us so well. They had a welcoming Red Velvet cake waiting for Deb. It was good! The staff also brought Deb a card and a very nice book about Callaway Gardens. The staff lady who delivered it told Deb that she had lost her husband to cancer. They had a strong embrace.

The little ones loved the pool. It is perfect for children with a very shallow slope.

At a little shop, the owner presented Deb a nice set of earrings from Israel. They became friends and craft-buds in 15 minutes.

Here are a bunch of mixed pix. Click to enlarge.

Evelyn and Vern play a duet

Stephen relaxes with Deb

Trey relaxes with Deb

Stephen plays with Parker

Parker and his father Jon

Deb lifeguards

Stephen chills

Deb and Parker

Katka holds Amanda's daughter Ellie

Trey, Evelyn, and Katka

Amanda holds Parker

Callaway staff member presents a gift book to Deb

Jewelry from Israel given to Deb

Katka and Evelyn play with the other family member-Nadia the dog

The plan is to fly to Arkansas tomorrow morning in Redbird (see www.Flightaware.com  N680V)

Tests begin tomorrow afternoon. We meet Dr van Rhee Friday morning. After that???