Monday's three ring circus

Amanda met with Dr van Rhee http://myeloma.uams.edu/vanrhee and his APN Kristen today up on the eighth floor of the Rockefeller Center to get enrolled in the experimental program to infuse Deb with Amanda's Killer Cells. Amanda had a physical and finally got her patient number at UAMS so things could proceed. There were meetings with the various Research nurses who monitor and manage the test program.

Dr van Rhee went over all risk factors that Amanda might face. Amanda asked her questions and signed the forms.

Amanda had to fill all twenty of these vials with blood down on the first floor for the qualification testing which will take three days to get results. The yellow ones are specific to special tests Dr van Rhee needs.

Meanwhile, 'back at the ranch', Deb was in a chemo chair on the fourth floor getting tested and evaluated for her complex state of health. APNs poked and prodded her. Deb had spent another miserable night with heavy coughing and wheezing. We had made salt water gargles, honey and lime water, etc trying to bring relief. Her lungs hurt so much I finally poured a new bag of brown rice into a clean sock which was microwaved to heat it. The heat gave Deb much relief. She slept on a sloping set of pillows. Changing infusers and Deb's discomfort made for another poor night's sleep for us.

Deb's numbers came up a lot today. The APN's think that because her white blood count has come up extremely fast and because she had some infections in her, the active white cells strongly attacked the infections in her lungs and caused the battle in her lungs. Remember though, that pneumonia is a lung thing! Deb has had many pneumonias. Bottom line: Most likely Deb's pain and coughs are caused by the rapid explosion in numbers and strength of her new white blood cells. But just in case, she came home with lung treatments and a few antibiotic infusers. We can't be too careful!

As caregiver to these two ladies today, 'ole Vern was up and down everywhere trying to get the ladies where and what they needed. To add to the confusion, today was day one that the eighth floor offices were opened. Folks were still unpacking up there.

The head of the whole shebang, Dr Barlogie walked thru and I congratulated him for a wonderful new facility and program. He is world renowned in the research for myeloma treatments. He went to Spain and back over the weekend to speak at a conference. http://myeloma.uams.edu/?id=7907&sid=28

The new eighth floor myeloma clinic is a thing of beauty! This photo does not do it justice!

Because of the excitement Deb's condition caused, we had a late afternoon CT Scan of her lungs and throat. No results yet.

For all this to work, Dr van Rhee said it is imperative to protect Deb from any viral infections. Therefore, she will be treated in a private room from now on.

Tomorrow, 9 am for more fun in the clinic!

Blessings!

Sunday-Amanda Arrives!

Amanda arrived this morning. Her heroic husband Jon and his father are keeping the six month and two year old children this week while Amanda is here.

Deb was in clinic this morning at 9 am. Her labs continue to improve. With the nightly infusers and the clinic meds, she is well cared for!

She is being assigned to the transplant side of the clinic where she will be exposed to less people and in preparation of the coming transplant.

Amanda will be processed first. She goes in clinic at 11 am . She will have final tests and blood work to confirm that she is indeed a suitable donor for Deb. Essentially Deb's remaining immune system will be killed off and replaced with Amanda's.

Deb just went to bed with a slight fever and her back hurting. She has a cough also, so don't think she is without troubles.

In the late evening, Amanda and Vern had a nice walk at the two bridges park.  Here is Amanda just at sundown.

Before coming out here,  Amanda and kids visited Vern's parents. Here is her collage of Vern's mother with baby Parker.

Tomorrow should yield some interesting information.
Stay tuned!

Blessings!

Saturday

Making this post Sunday am because we were whipped after another long day yesterday. We started out at 9 am. Deb had been hooked up to infusers all night and we did not get much sleep. Ditto again last night!

Yesterday Tim visited with us several hours before heading home. It is good to have a witness to our lives! Thanks, Tim!

This morning daughter Amanda texted that she had boarded the flight for Arkansas. Deb is dressing now and we are about to head to the clinic. Once I get Deb settled down in clinic I will go to the airport to pickup Amanda. Tomorrow she starts processing for the upcoming week's procedures. It will take three days for the blood tests that determine her final suitability as a donor.

Deb had a rough night again, perhaps worse than the night before.
She is almost frantic for me to remove the infusers after each one is emptied. That involves very carefully unhooking the infuser line, then flushing the line with a saline hypo needle, then flushing with heparine which prevents the blood in and near the line from clotting and thus blocking the line.

Blessings all!

Friday-Saw Dr van Rhee. He said....

After taking infusers all night, Deb was in clinic for labs at 0700 am. At 0800 we were in the Spine Center for our last visit in those offices as they will be relocated this weekend and will reopen Monday in the 8th floor of the Rockefeller Center.

While in the 5th floor of the Spine Center, we had a three-ring circus as Dr van Rhee and his APN Kristen assembled the team of nurses, researchers, and administrators needed to test and enroll our daughter Amanda in the donor program next week for the Natural Killer Cell transplant Deb will have on Oct 4th. Deb was examined and her labs were checked. Dr van Rhee made some changes to Deb's orders. He wants her protected as she approaches the transplant. She is neutrapenic and has been sufferring from infections of unknown orgins. With no immune system of her own left, she has had a plethora of antibiotics. Of course those strong meds are causing her digestive system to rebel. He ordered her to be treated in the private rooms to keep her isolated more from other patients.

Deb has had stool samples, blood samples, urine samples, and a nasal-sinus samples obtained by use of a sinus wash. Finally, after days of looking for causes of the infections, they found that Deb has a e-coli infection and possibly others. Her meds have been increased and changed to fight this.

It's not cheap! Besides the IV form of the Vanocin, Deb has to have these pill form of the same drug to battle the e-coli. When I picked them up, I asked the price. $4,900 for 96 pills!

Dr van Rhee had the consent forms for Deb and Amanda ready so they could read and ask questions before being entered into the experimental program. Here's what they look like.

You've probably heard people say 'Doctor's Orders.' Ever seen one?
These orders guide all your treatment and are complied with very carefully by the techs and nurses and serve as the legal authority for treatments and meds.

Deb is scheduled to be the seventh test subject in this Natural Killer Cell test. It is carefully controlled by the FDA and we were discussing it with a classmate in the waiting area. Turns out our classmate is an MD internist who really wanted to be in the test but was turned down.  Here he is while he was getting his labs and weight as he came into the clinic
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Amanda is now scheduled to collect the cells on next Friday. Monday at 11am she will get a physical. Blood samples will be drawn Monday and be sent out for special testing. It will take three days to get the results to determine absolutely if she is able to donate for Deb.

Amanda will get a line installed and then lie in a hospital bed while her blood is circulated through a large machine. The kinds of filters used will select out the specific cells needed. We do not comprehend the exact kind of cells since it is highly technical. These cells will be sent to Baylor University labs in Texas for processing and expansion. Dr van Rhee personally handles these cells in his 9th floor lab. Originally he was going to do the collection Thursday, but has been called to Washington, DC to the National Cancer Institute on Thursday. He will now do the collection and processing on Friday morning.

It ought to be an interesting month! Please pray for Deb's participation in this important test to give her a total healing from this previously incurable cancer as well as provide knowledge to help folks in the future.

Now, the secrets of this test might actually be found in the past! Dr van Rhee said this today!!! ???? What am I talking about?

A friend who is much more knowledgeable about medicine read a book about a missionary doctor in Africa many years ago. When he heard of Deb's situation, he sent a book about Dr Burkett and his work. Dr van Rhee read it and found some significant encouragement that his research is going the right direction in finding a cure for multiple myeloma as well as other cancers.

You see, years ago Dr Burkett was serving in poor African clinics with very limited funding and meds. He battled cancers there by bolstering the immune systems of the patients. Instead of drugs he didn't have, he used the natural processes of the patients. Not everyone succeeded but some did.

Today Dr van Rhee stated that much of the medical knowledge of the past has not been passed on to modern doctors very well.

Dr van Rhee's own father died of a disease named after the missionary doctor-Burkett's Lymphoma.
Small world!

Finally, Dr van Rhee left us with some good news today as he rushed out of the examine room.
"Your Light Chains are greatly reduced". In plain English, Deb's cancer markers are lowered since last tests.

Tomorrow we go in at 9 am. Deb has infusers and pills galore!

We've had a delightful visit with friend Tim Anders who spent the last two days with Deb in the Clinic. He returns to Atlanta tomorrow. His daughter Hannah is a new nurse working in Atlanta. Although Tim's parents and siblings are all doctors, he said the time here with us gave him a new understanding of the role of nurses and APNs.

The UAMS campus where we are is next to the War Memorial Football Stadium. The Arkansas Razorbacks who are based hundreds of miles west of us in Fayetteville, Ark,  play two games a year here at War Memorial Stadium. Tomorrow is one of the games. Tailgaters were already arriving. All this means Traffic with a capital T for us tomorrow!

Sunday Amanda arrives.

Blessings all!

Thursday-A visitor and a crisis

Today brought both a beloved visitor and a not-so-welcome crisis.

Tim Anders flew out to visit us. Tim and Vern have worked together for 20+ years. Even though Deb was having a rough day, she too enjoyed Tim's visit.

Tim shot this photo of us in clinic

Here are a nurse plus two APNs-Diane and Nadine- working with Deb-inside about ten blankets. Only her nose poked out. She was a sick puppy!

We began the day about 9 am with labs and then Deb began taking IVs which lasted until 6 pm tonight. One of the meds put her in crisis. She was talking on her phone when she was suddenly overcome with cold. She hung up and began uncontrollable shivering and shaking. Her teeth were literally chattering. We grabbed more warm blankets and tucked them all around her. Tim ran and got our nurse who was inserting a needle into a classmate. She called for the APNs who arrived and went into crisis management. They cut off everything and got her stabilized. They sent for a demerol shot which would be the final attempt at giving Deb pain relief. Fortunately, Deb began to fell better. The rest of the day's meds were given one at a time and we brought six infusers home to continue all through the night.

Deb is heading to bed now at 9:30 pm and has two infusers now. At 2:30 am they get changed. Then changed again!

Tomorrow starts with 7am labs and Dr van Rhee at 8 am. We see the coordinator of the Natural Killer Cell test to discuss Amanda and Deb's schedules and paperwork for the coming weeks.

The offices of the myeloma clinic administrative staff and doctors are moving from the Spine Center fourth and fifth floors to the Rockefeller Cancer institute eighth floor thus weekend. Therefore, we expect a degree of bedlam as Amanda comes in Sunday for a week.

Deb is very neutrapenic and she is getting some very strong antibiotics tomorrow. Hope the day will not be as long and tiring as today has been.

Blessings all!

Weds-A long day in the clinic

We went in clinic at 9 am and came out about 4 pm. Deb had multiple IVs and we brought home a large sack of infusers and pills.

Nadine, our APN, explained to Deb a phenomena she has been experiencing: a hard time swallowing. Seems like the chemo causes the lining of the throat, stomach, and intestines to slough off. Some of this matter blocks the esophagus and causes it to be hard for Deb to swallow. Unfortunately, she is having to take some genuine 'horse pills' every six hours! She is having the hardest time getting them down! 

Deb had to have a unit of blood today. Her white blood count was 0.1 so she is definitely netrapenic. The antibiotics continue.

We go in Thursday at 8 am because she is getting IVIG, a blood-product like med that boosts one's immune system. It takes 3-6 hours, depending on how one reacts to it. Some people have a very hard time taking it. We see Dr van Rhee when that is done.  

Tonight the bandage that covers the PICC line in her arm is looking funky even though it was recently changed. The skin under there is looking funky also. That's a medical term that means 'funky.'

It could be the source of Deb's infection that has been causing her CRP to rise and may need some attention tomorrow. I wrapped it in a flexible bandage to help Deb get thru the night.

Tonight we have infusers going. The next one gets changed at 2 am.   

We got a text from Trey who had boarded an almost full plane back to Brussels. Sure was fun having him around.

Deb was very hungry when we got home and craved Vern's famous Tilapia. So, nothing would do but to go to the grocery and get some fresh fish. She was delighted and there is enough left in the frig for her breakfast- a favorite breakfast item for her-cold Tilapia!

We are very tired so we are heading to bed a little early so we can do the 2 am thing.

 Deb thinks she has sprung a little fever, so I have to go and dig up some Tylenol, unless it goes over 101 degrees when the staff wants to know.

Just another day in Arkansas!

Blessings all!

Tuesday-Trey heads home after meeting Dr van Rhee

Trey wanted to meet Dr. van Rhee while he was in the states and today he was able to meet and get to know him. Dr van Rhee is from Holland and Trey has visited his hometown. Dr van Rhee told Trey about his education and all the places he has lived. He said that Little Rock is the longest domicile he's had and he really likes it here.

In discussing Deb's care and the Natural Killer Cell experimental program Deb is entering, Dr van Rhee assured Trey that he and the team would give Deb the very best care they could.

The waiting room is an interesting place. Everyone who feels good wants to hear others stories and tell their own. As you know, Deb's Multiple myeloma  centered on her seven broken vertabrae in her back. Deb went to multiple medical folks before angel Chuck discovered the cause of her troubles.

One lady was telling her story about how her myeloma showed up on her head as a bad sore grew. Her doctor diagnosed her trouble as an infected hair follicle. After some time she got other medical help who discovered the myeloma. She has a large metal plate on her skull replacing the skull portion that was eaten away by the myeloma.

The fellow sitting across from her had a similar story except his myeloma was in his large leg bones. Because the bones were damaged, he has metal rods in his legs now.

The next fellow had a huge neck brace because his neck bones were destroyed.

Lot's of hurting classmates here who have a multitude of injuries.

 Deb and Vern in the waiting room

Anyone seen my glasses?

 Trey enjoyed sitting with Deb in the chemo cluster. He has a lot of medical knowledge and was a super helpful caregiver in keeping Deb supplied with ice and juice.

Vern and Trey

Although the weatherman said it was only 100 today, our porch thermometer recorded its highest ever temp. It was at the top of the markings: 120 degrees! It felt like it too!

After Trey left Deb took a nap. When she woke up she was starving and wanted only mashed potatoes and green beans-mixed together! That has been her comfort food of choice for this whole cycle. Deb's taste preferences rotate and keep me hopping!

A friend called tonight and we had a long talk about our situation. Deb and I are extremely grateful about the situation we are in. That sounds strange, doesn't it?

We are not happy about myeloma. But our situation makes us so grateful. We have insurance. We have transportation. We have the condo and our home in Georgia. We have supportive family, friends and church, as well as Vern's workplace. We have an air conditioner that works. We had mashed potatoes and green beans-mixed together!

Many classmates do not have these things. There are folks here, most 10-15 years older than us, who are living in campers, motor homes,  and we have even heard of one in a tent! Many have insurance that will not allow infusers, and certain drugs, and force the treatments to be scheduled in non-optimum ways.

Yes, the myeloma stinks, but we realize our situation could be even worse. We are so grateful for God's provisions and we appreciate each of you and the many ways you encourage us in this journey.

Tomorrow ...more of the same? Starts at 9 am. But tonight we have 5 infusers to hook up thoughout the evening. Deb is being treated as if she has CDIF until her tests confirm it. She has symptoms and the APN wants to ere on the side of caution.

Blessings!

Monday-Labor Day with Trey

Trey was with us today in the chemo clinic. There are so many hours and hours of just sitting.  We enjoyed it together today. Deb was in-clinic twice today. She has had a number of miserable days. The second time was to get platelets. She has to get matched platelets with pre-meds. That takes time and sometimes the platelets are not available.

To have that time together is precious. If you have small children, you are with them all the time. Time with adult children is scarce! Especially those who live in Europe!
Trey heads back to Atlanta tomorrow, and then back home to his two lovely redheads. We will miss him. Trey hopes to meet Dr van Rhee tomorrow before he goes.

A week from today Amanda will be with us undergoing the processing to retrieve cells for Deb's Natural Killer Cell experimental treatment.

Sunday-ARRGH + Redheads!

We parked next to this car with this tag today. It must have been an omen of how Deb's day was going to be, as in her own words she just said,  'today in the clinic was a dirty rotten no-good day!!!'

We took Trey with us as he is spending a few days here in Arkansas. He has been here before. He was a hit with all our nurses who have been hearing about him and his lovely family in Belgium.

Because it is a holiday weekend there were not many classmates here. The staff is getting ready for the move into new facilities next week so they have limited the return visits and new entrants. So we got in fast but stayed a long time.

Deb's Wozzy Meter was about 8.5, so Trey wheeled her in in a wheelchair. Deb's lower tract was on strike so she had a lot of distress. With a temperature and other signs of trouble, all sorts of tests were done. Caleb, the PA, made an appearance and ordered new meds and tests. Caleb is the assistant to Dr Barlogie, the 'big cheese' in charge of the whole place. He is an Auburn grad and talks with a heavy Southern accent, unlike his bosses heavy German accent. Wonder how those two ever partnered up?
Caleb was distressed because his ball team lost last night, so in his honor we Bulldogs give him a big 'WAR EAGLE!'

We finally got Deb home. Trey made her some 'tater soup and we shopped for some organic fruit to make smoothies for Deb. Her tastes stay one step ahead of our pantry and what she craved yesterday is repulsive today. That is a major caregiver function: figuring out what to feed the lady. I guess turn-about is fair since she spent years doing that for me.

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Free added bonus!

While Trey is with us, his wife Katka and daughter Evelyn attended the annual International Redhead day in Delft, Holland {town: as in dishware}

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