May 29

I wanted to share some pictures with you that I took during Doug's stem cell infusion. I took more pictures than my blog allows for one posting. I hope pictures speak louder than my words to describe this awesome event in our family's life.

The medical technologist came to the clinic with the cells in a caldren of refrigerated nitrogen. The cells collected were spun in the blood bank's lab and 25 cc's of stem cells were put into each of two bags. Each bag also contained 25 cc of DMSO, a preservative, which does not harm the patient but leaches out of their bodies producing an oder which to me smelled like cream corn that you get in a can.

Since the day of collection Doug's cells have been kept frozen at -196 degrees celcius. The med tech, Natalie. who brought the cells works for the Carter Blood Bank. They will store 1/2 of the cells collected from Doug should Doug ever have need for them in the future.

Natalie's undergraduate degree is in clinical lab science. She is certified by the American Society of Clinical Pathology to do this specialized work. What we found interesting is that she is a cancer survivor who has been cancer-free for 14 years. I'd guess her to be in her early 30's.

The two chemo nurses and Natalie trippled checked the label on the packaging to be sure the stem cells were Doug's and going back into the correct patient. Natalie read to Debbie then Debbie to Fatima.

In the picture above you can see that each bag of cells is contained in a protective metal case. They come frozen flat. Then the bag of cells is placed in a machine that Natlie brings with her called (in laypeople terms) " the warming bath". When the stem cells come up to body temperature the bag of cells is ready for infusion. The team works together rapidly at that point.













The "blessing" of the cells took place (see the other May 29 posting). The first bag was hung on the pole with the other hydrading fluids that Doug received prior to the arrival of the cells and were connected to Doug's central line. I called it his new life link. Meanwhile Natalie is warming the second bag of cells.

One of the chemo nurses monitored Doug's vitals the entire time while the other nurse monitored the rate of flow of the cells into Doug's central line. Because Doug's collection was so successful with so many stem sells per micro lieter he only had two bags of stem cells whereas others frequently have more than two even as many as eight bags.

Each bag took 20 minutes to drain so that in 40 minutes Doug's happy cells were using their God-given instinct to find their way back into Doug's bone marrow. Natalie explained that the cells have receptors on the outside and when returned know right where to go. They set up shop in the bone marrow and within a couple of days they start dividing. Meanwhile Doug will feel weak and fatigured.

Doug was comfortable during the entire process and said he felt nothing. I can't help but tell you I have a picture of him talking on his cell phone to a pastor who called him just before the action started. When I heard Doug say "How can I be of help to you?" I wondered if the pastor had any idea what Doug looked like from where I was sitting.

When the infusion was complete and Doug was unhooked he stood up and walked with me to the car and rode with me to the pharmacy to pick up a perscription. I can't find words to describe what that felt like to both of us.

We go to the clinic every day now. We have to be real careful of infection/fever until his immune system kicks back in. Friday and Saturday he will have blood transfusions. Sunday the injections of neupogen will begin again to assist in the growth of new cells. This time, however, the dosage will be less. We are grateful that during this entire process he was able to be a clinic outpatient.

~Carole

PS Of interest to us (and no one else) is that May 29 is Dr. Collins' birthday so Dr. "V" covered for him. She is a brilliant physician whose last name is longer than most can pernounce so goes by Dr. V. She has covered for Dr. Collins and seen Doug before.

May 29 Blessing

Today was the day Doug's stem cells were infused back into his body. In a ceremony as emotional for us as our wedding day, the following blessing of Doug's stem cells was prepared by Rev. Gina L. Biddle, BS, MA, BCC from the Chaplain Services Department
UTSouthwestern Medical Center. Dale, our social worker, chemo nurses Debbie and Fatima, medical technologist Natalie from the blood bank and Pastor Gina shared this special moment with us. As the first of two stem cell bags was hung for infusion back into Doug's body we each had a copy and responded in kind to the following:

Blessing of the Gift of Cells

for

Rev. Doug Kilcher

CHAPLAIN: We come today to celebrate a new beginning.

Any new beginning stirs up many feelings within us.

ALL: We feel afraid and anxious about the unknown, but at the same time we feel excited and hopeful as we look forward to new possibilities.

CHAPLAIN: The cells we bless today, Doug, offer new possibilities for your healing. We give thanks to Carole, for her gift of love and companionship to Doug as he takes this journey of life. These cells from your own body are an amazing gift from the Creator of all life.

ALL: Thank you, Great Creator, for this gift of life and for this transplant as a means of using this gift of healing.

CHAPLAIN: Loving Creator, our understanding Friend, we come bringing all our fears and hopes to you as we bless these cells for Doug's healing.

DOUG: Today I receive these cells with profound gratitude and hope.

CAREGIVERS: Doug, may you feel our hope and love supporting you, bringing you renewed energy and hope.

CHAPLAIN: May Divine Love and Wisom "be healing to your flesh and marrow to your bones" (Proverbs 3:8). God of all love and grace and healing, bless these cells for Doug's healing according to his deepest needs of body, mind, and spirit. May Doug feel your power flowing through every cell, bringing a new day of health and joy and creative energy.

ALL: Loving Creator and Friend, come with us now on our journey into the new. Lead us forward with your vision of abundant life, and help us to continue to become all you created us to be in your divine image, now and forever. In the Name of Jesus Christ.

Amen.

May 22-26 &27

May 22-26 & 27

I didn’t post anything from the 22nd through the 26th because there was nothing unusual to share. It was a time of rest for Doug as the team waited for his white count to drop. On Memorial Day we did drive to a farmers market. Whoopee!

Today, May 27, is a day we’ve been both excited about and dreading. We've been excited because today is the beginning of the end of this particular chapter in our lives; dreading because the words heavy dose of chemotherapy (as compared to a standard dose) made our imaginations go back over all the after math of every other IV chemo Doug has endured previously. Neither of us slept well last night.

The chemo nurse caring for Doug today is one of our favorites. We were in a private room with a window looking out on what turned out to be a stormy day. A large bag of general fluids and anti-nausea meds were started at 9 a.m. At 11:30 the nurse brought in the chemo bag, hooked the small bag onto the pole, and connected it into Doug’s line. That bag’s drip was done in 30 minutes. He felt nothing different while it was going in. Two hours later he threw up once, he received an additional injection of anti-nausea medicine in his line and we waited until the large bag’s last drip finished. He walked out of the clinic with me at 3:00 p.m.

I was surprised that after he rested for about an hour he said he was hungry. We are doing small, frequent snacks. With little strength and vitality he is spending his time in bed but so far no complications.

We have been warned that today would be an AOK day. As his blood counts drop during the next 7-10 days he will feel less well. As his counts recover he'll build back up. We go to the clinic every day now so it is their plan to treat Doug as an outpatient. I am his private duty night nurse!

There is a chance he’ll have to spend a few days in the hospital when his counts are the lowest. After the clinic is closed I have a phone number to call anytime I have a concern. The doctor on call will tell me what I need to do. If it is best that he be admitted to the hospital, this time I will be able to take him directly to the hospital without going through the emergency room. That is huge for both of us!

Tomorrow we check into the clinic for labs and fluids. Thursday is the day Doug's stem cells will be returned.

Doug said today that he can see the checkered flag of remission in the distance. Thanks to all of you who have stayed in the bleachers to cheer for him throughout this race.

~Carole

May 19-21

I promised to get back with you about the unit of measure which followed Doug’s 412 as computed by the blood bank’s C34 test. The answer is micro liters. As I understand it, that is a lot of stem cells ready for collection. It was a surprise to the technicians who were with us and they were pretty sure they could get the 20 liters Dr. Collin’s group requires in one day. Ok it was a 6 hour day but better than what we had anticipated. Our transplant coordinator had warned us that they scheduled 5 days for collection but usually harvested enough by the 3rd day. Prayer changed that for Doug!

He was in a hospital bed and I sat beside him in a broken “chemo chair”. There were two techs from the blood bank. The one who watched the machine had worked for the company that built and manufactured it, went through the clinical trial period using it and trained end users at all the cancer centers in the United States. He said that 6 months ago a computer version came out but he doesn’t trust his own home computer to work right all the time so is biased towards one that is monitored by a human (solid state cell separator rather than a computer controlled cell separator). He retired from the company and now works part time for the blood bank.

As he was attaching Doug’s lines to the machine (or the machine to Doug’s central line) he told Doug that Doug was about to receive one of the only medical procedures that is painless. One just has to tolerate resting in bed (which Doug is tired of doing!).

The male tech was concentrating on the machine most of the time and the female did paper work as well as other duties in and out of the small room where we were located at the clinic. The operator of the machine determines what cells are coming up the “collect” line. He watches the color and manually controls and fine tunes the flow as needed.

Once in awhile the male tech would sit down. That is when he and Doug talked about cars. He told Doug what he had owned in his lifetime and Doug mentioned his ’67 Chevelle Malibu Super Sport with a 396 engine. Then the tech said he was car poor now. He most recently sold one of his 3 Vipers (a red ’92 with black striping and a silver ’99 with blue striping!) After that Doug didn’t admit to driving a hand-me-down Buick and changed the subject. (Men are funny that way). Doug just reminded me that over the years the guy also owned several Shelby Ford Cobras along with a number of Covets.

I found it interesting that the techs told us that the smaller the individual the longer the process takes. During random conversations he noted that at anyone time only 300 CC of Doug’s blood is in the centrifuge and lines. The plasma and leucocytes (where the stem cells hang out) go into separate bags and the platelets and red cells go back into Doug. Some red cells do get into the collection bag but they are heavier and he watches as the bag layers—the red cells being heavier thus dropping to the bottom of the bag.

He also noted that we all have tumor cells inside us. The difference between someone who gets cancers, although not just this simple, is that the immune system cannot control the multiplication of the cancer cells. If there would be any cancer cells in the collection bag, the intent is that the next chemo Doug is to receive will knock out all cancer in his blood. When the bag of happy cells are put back into Doug 48 hours after the chemo he will again receive injections to build up his immune system until the happy cells graft back into the bone’s marrow and cancer cells can be combated. Stem cells travel through the bloodstream to the bone marrow where they lodge and differentiate into all types of blood cells to help prevent infection and repair the body.

This quote regarding stem cells from Dr. Paul Simmons helped my understanding:
“No other cell in the body has that combination of self-renewal, extensive proliferation and differentiation capacity,” states Paul Simmons, Ph.D., director of Stem Cell Research at the Brown Foundation Institute of Molecular Medicine for the Prevention of Human Diseases at The University of Texas Health Science Center at Houston (IMM). “Understanding how to control the differentiation of stem cells is still a major endeavor that is underway in many labs around the world.”

Six hours after Doug's treatment began the machine had separated 20 liters of what the blood bank will cool than freeze until they are returned to Doug 48 hours after his last chemo treatment next week. A warming process of the blood products takes place first but that is part of “the rest of the story”.

Doug was disappointed yesterday (20th) when he learned that his chemo cannot be given until next week. His white cells are too high—a good thing at some times and not good for the impact Dr. Collins wants to have on the cancer cells in Doug’s body. Doug is still very weak and wishes for more energy which I cannot go out an buy or graft to him.

Memorial Day is celebrated early this year so Tuesday is the first day they could schedule the “sledge hammer” chemo that we are not looking forward to yet signal the beginning of the end of our battle to fight back. We know you will be praying with and for us and that support will get us through.

~Carole
P.S. To our friends in the medical field more familiar with blood than I am, if I have misrepresented anything known to you, I’d be glad to make corrections in my blog.

May 15-18

The 15th and 16th of this month blend together in my mind as hospitalization routine for Doug (and me).

Doug has had engaging conversations with the medical team that has cared for him during his stay in the hospital. On the 17th when he was discharged to my care at home the discharge nurse said, “All of us want to know where you found such a kind man?” I smiled and told him it had taken me 40 years to train him and I wasn’t interested in training in another one!

Seriously it makes me proud to hear his care-givers in the hospital refer to him as kind considering the type of pain he had to cope with and how cruddy he felt over all. Just this week a relative (young adult) wrote that she felt Doug was the kindest man she knew and wished him full recovery. His kind way with me was one of the reasons I was attracted to him 40 years ago!

Doug slept most of the afternoon Saturday. Kristi was with us for the last time this trip and when she kissed us goodbye told us that she’d try to save up enough money to come back every three months or so. She loves Seattle and brought us a table top book of the city so she could point out to us the areas visually she talks about: where she lives, the area overlooking Lake Washington where she works, the dog park that she loves to hang out at with friends and their pooches. Of special interest is a view of the city that includes the hospital where Doug was born.

Saturday evening Doug’s temperature began its journey upward. Because he was feeling so weak and sweating abnormally he called the on-call doctor. His fever was 1/10 of a point from where he’d have to call the on-call team anyway. The on-call physician who had treated Doug in the hospital frequently gave us a new medication regimen to try and we were able to avert a trip back to the ER and the hospital.

As I write it is Sunday, the 18th. I checked on Doug throughout the night last night and administered his pain meds as scheduled, gave him a Popsicle and filled an ice bag for his head.

We went to the clinic this morning. Doug had the usual vital signs taken, his daily Neupogen injection, and blood draw. The nurse practitioner listened to his lungs and spent a lot of time talking with us alleviating my concerns about the “new normal”.

The chemo nurse drew a vial of Doug’s blood specifically for the “C34” test which she sent to the Carter Blood Care group today. They will evaluate the number of stem cells therein. We will receive word in the morning whether or not Doug will begin the stem cell harvest tomorrow or just go in for another injection. The team is optimistic and feels that Doug’s cells will be ready to begin the harvesting process tomorrow. If so, Carter Blood Care will bring the machine to the clinic. We are told collection is a boring process with little to no side effects.

The stem cells will be protected in dry ice from the “sledge hammer” chemo he’ll receive potentially late this week. When they are returned back into Doug’s system they will be “happy” and absorbed more readily to the bone marrow because they have not been damaged by the chemo. This will make Doug’s final recovery easier.

NEWS FLASH

At 1:30 p.m. I received a call on my cell phone from the weekend transplant coordinator for Dr. Collin’s team. She had just received the results back from the Carter Blood Care group re: the
C-34 test taken at 10 a.m. this morning. Doug is defiantly ready for collection tomorrow. We need to be at the clinic at 8 a.m. and plan to be there for 6 hours.

The most amazing thing is that when I asked about the C-34 she told me they begin collection anytime after the number 10 (which I have no idea if its 10 parts/?? –I’ll have to get back to you on that). Doug’s number is 412! I went into where Doug is and gave him the "high five". We are both excited to get to this next level of treatment.

It will be interesting how many days of collection it will take before they have enough for 2 infusions, one for now and one stored for future use should that be needed before Jesus comes and makes Doug’s body new.

~Carole

May 13 and 14

The last two days have been a roller coaster ride as far as Doug’s fever, pain and nausea is concerned. Each time we ask the medical staff about this turn of events that keep him in the hospital they say “It’s normal."

Doug’s doctor did put off the stem cell harvest originally scheduled for the 13th. He shows no concern at all and tells Doug the dates are flexible and he's still on schedule.

To assist Doug they gave him 1 unit of platelets and two more units of blood yesterday (13th) and another bag of platelets today (14th). His fever spikes to 101 frequently. Fever and pain is most often blamed on the high dose of Neupogen (780 cc) that he gets each day. Even though he is still in the hospital, we are both sure he is where he needs to be. I would hate to be taking him to the ER each time his fever spiked.

I think I've referenced this before but today a nurse explained to Doug that the pain happens when the “baby white cells” are being asked to multiple rapidly and come out from the bone marrow into the blood stream. For Doug this causes sharp pain in his sternum.

Today (14th) we had a neat experience with Doug’s day nurse. She is a fun, vivacious individual who is easy to talk to. We also learned she is a contract nurse with a traveling nurse agency.

Doug said, “Tell me I’m not going to have pain after they harvest.
The nurse replied, “Well my pain lasted for about 3 days afterwards but I went back to work the next day.”

Doug: You mean you’ve been through this?
Nurse: Not as a patient but as a donor for people who are not well enough like you to use their own stem cells. If I am healthy, why not? I’ve been matched 4 times and donated 2 times. The first time was for a 15 year old boy who had acute leukemia. He is now 17 and in remission. The second time was for a 40 year old woman. I’ve heard she is in remission too but I haven’t met her yet.
Doug: You mean you can meet the one you donated to?
Nurse: Yes, you can meet after their first full year in remission.
Doug: Why would you donate two times?
Nurse: I’ve been giving blood since I could and put my name on the National Bone Marrow Donor Registry < http://www.marrow.org/>. I figure since I am healthy and can give someone hope and a better life I should. If I got sick or one of my loved ones did, I’d want someone to do that for me. As far as I know I am the only woman who has donated twice. There have been a couple of men who have donated twice.
Doug: How do they figure out you are a match?
Nurse: They start with blood type but then much of it is based on DNA testing. I don’t know all the details. One time I had an IV in both arms and had to sit without moving my arms for 8 hours straight. I had my DVD player in front of me and someone else put a new one in when it ran out. The hardest part is that they want you to have had lots of milk to drink before the harvest because the transplant depletes your calcium but I couldn’t go to the bathroom while I was hooked up to the machine. Well, they would hold a curtain around me but you have to be on a bedpan and that didn't appeal to me. The second time the harvest was from my hip bone.
Doug: What made the difference in the way they do the harvest?
Nurse: It is up to the doctor to decide what is best for the patient. The donor is not the patient. It is the way the physician feels the stem cells will graft the best to the patient.
Doug: May I ask if you are motivated to do this for others because of a Christian faith?
Nurse: Yes, I’m a Christian. God gave me the health I have and if I take it for granted He can take it away, too. My mother has always appreciated that I loved serving others before this but I’m her baby and when I did it the second time she wasn’t so sure because of the risks involved for me. I don’t even think of the risks. I think of giving hope to someone in need that I match and can help.

Doug and I were blessed by her testimony. It made me think about the fact that it would never have occurred to me to donate for a bone marrow transplant. Blood drives are frequent. We hear a lot about being organ donors. I am now much more aware of the essential need not only for whole blood donors, but also for platelets and bone marrow/stem cell donations.

It also made me think of a Donor that shed His blood on a cross to give all of us hope.
~Carole

May 10-12

We've been told to expect the unexpected and that is so true.

May 10 was a quiet day until 10 p.m. when Doug's fever spiked. The on-call doctor told us to go to the ER and from there Doug was transported to another hospital and the floor best suited for cancer patients.

May 11 blended in a bit with May 10 as you can imagine. But the special part of May 11 is that it was Mother's .Day. When I went to the hospital, our daughter Kristi who lives in Seattle, WA was "hiding" beside her father's hospital bed to surprise me. Her Daddy had worked with her to pull off the Mother's Day surprise for me. I also received a large basket of "goodies" from our kids in New York. I love my kids. I'm glad they love me!!!

As I write this posting, May 12 has just begun. Doug is begging the doctors to let him come home from the hospital. He is still receiving bags of medication to fight whatever bacteria caused the fever and I don't believe the cultures taken in ER have been read as yet. I'll check in a few minutes when I go to the hospital. He no longer has a fever.

Today is Kristi's birthday. We'll talk about the first day we saw her. We drove from where we were living in Wenatchee, Washington to Brookings, Oregon to pick her up. We'll also pray a prayer of gratitude for her birthmother's unselfish gift to us.

I'll find a time to take Kristi somewhere we can celebrate her special day. Doug wants to do something special with her also. Ordering up two guest trays of hospital food is not what he has in mind!!

~Carole