In December 2003, Raynan was diagnosed with a rare blood disease called Polycythemia Vera. We were told that only 4 in a million people have this disease, and that there was no known cause and no known cure. But God be praised! Our dear friends, family, pastors, and even strangers refused to accept the bleak prognosis. God is using your faithful prayers to produce a work of healing in Raynan’s life. Through faith, we anticipate the day when a doctor looks at her test results and declares, “You are a living miracle. There is no trace of your disease.”
Because so many of you have expressed interest in Raynan’s condition — through phone calls, letters, emails, and Facebook — we are dedicating this page to weekly updates on her medical situation.
Please keep praying!
Tuesday, July 17, 2012
It has been almost a year since Raynan started the Pegasys (pegylated interferon) treatment. Remember the miracle it took to get the sponsoring foundation to change their policies and finance Raynan’s treatment for a cancer they normally do not cover? Each weekly injection of the Pegasys medication would have cost more than $600.00 (close to $30,000 a year). And Raynan’s spleen has shrunk, her blood counts have gone back to normal or near normal, and the terrible itching has practically gone away.
Last week we got news from the foundation that sponsored the Pegasys. They had reviewed Raynan’s case for a renewal of the treatment for another year. However, they reverted to their original policy and decided that she did not qualify for the sponsorship by the foundation. We had enough injections for two more weeks and that would be all they would supply. Our doctor’s office got the same word, but told us not to panic. They were applying for sponsorship for the new medication that the doctor had introduced us to several months back. I did some research on Jakafi, the newly FDA approved medicine in pill form for treatment of post-polycythemia myelofibrosis. Everything looked very positive… except for the price: $7,000.00/month or $84,000.00 per year!
Then we got word that Raynan had been approved and the most we would have to pay would be $50/month, and they were shipping the medicine to our home. So, last Thursday Raynan had her final Pegasys shot, we received the delivery of the new medicine, and this coming Thursday she begins with Jakafi.
Thank you for your continued prayers
Monday, May 30, 2012
The pneumonia that the doctors diagnosed when Raynan was in the hospital in April is gone, and the colitis is under control. The colonoscopy showed that she did not have any polyps. Biopsies confirmed that there is no sign of cancer and the colitis was non-specific. However, although it is not life threatening, the original problem in the colon persists, and we continue to pray for healing in that area.
Raynan has been slowly recovering her strength after the hospital stay. Nathalie flew to Virginia Beach in May to help with the commissioning service at Regent University, and Doug stayed home with Raynan during which time she had an ultrasound procedure to determine the state of her spleen and gall bladder. While Doug travelled for ten days in South Texas on itineration at the end of May, Nathalie was home with Raynan and took her to an appointment with her doctor. He reported that the ultrasound shows the spleen continues to shrink. However, the gallstones seem to have increased and Raynan will continue to take medicine for that, since she is inoperable.
The doctor mentioned the possibility of beginning treatment with a newly FDA approved medicine called Jakafi. It would be a pill taken daily instead of a weekly injection of the Pegasys, and it seems it would address her disease more specifically and effectively. We are studying that possibility.
Monday, April 2, 2012
Praise the Lord! Raynan was released from the hospital around 3 pm Central today. We are all pretty tired but delighted to be at home again. We are blessed to have so many friends who’ve surrounded us in this latest “adventure.” We love you guys! You keep us going!
Raynan is scheduled for a follow-up visit to the gastroenterologist on Easter Monday to go over the results of the biopsies. We should know more at that time. In the meantime, she continues to take antibiotics for the colitis and pneunomia.
Sunday, April 1, 2012
After spending 9 hours in the ER on Thursday, Raynan was admitted to an isolation room in the main hospital. Being in isolation meant that anyone coming into her room had to wear a gown and gloves and wash their hands when entering or leaving. Although she was still experiencing some discomfort, the major pain had subsided but she was dealing with other issues.
On Friday morning, Raynan underwent a prescheduled colonoscopy. It went well but they took biopsies and won’t know the result of those until next week. In the meantime, she contracted pneumonia and the doctors put her on an agressive antibiotic regimen as well as medication to treat the inflammation in the colon which seemed to be the root cause of her original severe abdominal pain.
Her nights at the hospital have been pretty miserable and Doug and Nathalie are alternating night shifts to be with her around the clock.
Today, Sunday, we learned with mixed emotions that she will most likely be released from the hospital tomorrow. On one hand, we are so thankful that she is getting over the pneunomia and that the doctors are optimistic about her imminent release; on the other hand, Raynan experienced major disappointment because she thought she’d be going home today and couldn’t believe she had to spend another night in the hospital. We are looking forward to tomorrow with great anticipation!
Thanks again for your thoughts, calls, emails and prayers!
Thursday, March 29, 2012
Raynan is currently in the ER. We had to call 911 around 3:30 am (night between Wednesday and Thursday) because she was in extreme abdominal pain. They ran some tests at the hospital and have decided to admit her to Cox South here in Springfield. She was scheduled for a colonoscopy tomorrow but that is on hold for now until we know more.
Thank you for your prayers and we will keep you posted!
Thursday, March 22, 2012
Pretty much a “ditto” of last week, except the platelet count is down again (below normal range).
Raynan’s colonoscopy has been re-scheduled for next Friday morning, March 30th at 11:00. Her appointment with the oncologist will be on Wednesday next week, instead of her usual Thursday appointment because she will have already started with the pre-treatment cleanse on Thursday.
Thursday, March 15, 2012
Nothing but good to report today. Raynan’s bloodwork was pretty normal — some levels were below and some were above range, but for the most part they were okay.
Everyone said Raynan looked well and really seems to be improving. The doctor approved her weekly shot of pegylated interferon, the nurse gave it, and then we were on our way.
Monday, March 12, 2012
Raynan went to see her primary care physician today. He hadn’t seen her since Oct 2011 and said she was really looking well. He postponed her colonoscopy which was scheduled for March 14. He examined her and said her spleen had really gone down. It has moved back into place on the left side of her abdomen.
So far, all of the really bad side effects of the Pegasys shot that the doctors and nurses had told us about have been just the opposite and have been really good. For that, we thank the Lord for answering our prayers and yours!
Thurday, March 8, 2012
Raynan turned 66. All of us are thrilled she has lived to see another birthday. She received lots of sweet cards, phone calls, gifts and e-mails from friends and family and enjoyed all of them, including the birthday greetings on Doug’s Facebook page.
She went for her usual Thursday bloodwork and Pegasys shot and received a good report on how she is doing. Raynan was craving grilled steak and shrimp so we took her out for lunch after the doctor’s appointment.
Doug surprised her with a new bike which she had been wanting but wasn’t expecting at all. Nathalie made a delicious “Hummingbird” cake (from scratch) that Raynan had seen on the cover of a magazine. It was so good — but so rich!!
Thursday, March 1, 2012
Raynan had her 30th shot of pegylated interferon today. So far, so good! Her platelet count is back up in the normal range for the second week in a row.
Thursday, Feb. 23, 2012
Raynan had an appointment with her oncologist today. She was able to ask him a question that many people have been asking her: “How long will this Pegasys treatment take?” The doctor answered, “As long as it’s working.”
Her weekly bloodwork revealed that her platelets have come up to the normal range. And when the doctor examined her spleen (which had doubled in size due to the polycythemia vera), he said, “Wow, it certainly has gone down. I can feel the difference.”
He also said that when he saw Raynan in the hospital after she’d had her second stroke (Oct 2010), he thought he’d never see her alive again.
Praise the Lord for this ongoing miraculous healing and testimony! Thank you for your faithfulness in continuing to pray with us.
Thursday, Feb. 16, 2012
Raynan went for bloodwork today and also received her 28th shot of Pegasys (pegylated interferon). Her platelets are still low (under the normal range) but up from last week. She had been having more side effects last week so the doctor chose to forgo one week of treatment; however, Raynan was feeling much better this week so the shot went on as usual.
Monday, Feb. 13, 2012
How quickly time passes! So much has happened since we last wrote.
Nanette and her youngest daughter, Sahara, came for one last visit to us in late December. We enjoyed spending time with the baby while Nanette went through the boxes she and Aaron would be leaving in storage in our attic.
Just before the new year, we drove the girls back down to Texas where we spent several crazy days helping Nanette and Aaron pack up all of their belongings, cleaning their house, and spending precious time with our two granddaughters.
January 4th was a sad day for us as we said goodbye and put them on a plane that took them far away from us to North Africa. We were so thankful and relieved that all went well and that everything and everyone made it safely to their destination.
The latest we hear from them is good: they are getting settled into their new quarters, although they certainly are missing some of the comforts of home — like heating!! They wanted to install a bathtub in their apartment but had to explain to the owner what a bathtub was. They lost that battle and have settled for a washtub in the shower. The little girls are loving it!
In other news, Doug stayed in Texas to officially launch his year of itineration. Later in January, Raynan’s sister came to Missouri to be with her for a couple of weeks while Nathalie flew to Virginia to help coordinate a symposium for Regent University.
END OF SPEECH THERAPY! Raynan has “graduated” from her speech therapy sessions. Although overall the sessions were helpful, Raynan is relieved to have one less appointment to go to each week.
Last Thursday would have been Raynan’s 28th shot of pegylated interferon. However, due to a low platelet count and a high risk of bleeding (as well as concern over some other symptoms she was experiencing) the doctor opted to skip last week’s shot. He has also scheduled her for a colonoscopy on March 14 to check on some areas of concern.
Please pray with us this week:
Favor with pastors and congregations as Doug travels through South Texas (and esp. San Antonio) over the next week and Arkansas next week
For Raynan’s upcoming colonoscopy
Protection for Doug on the road and for Raynan and Nathalie at home as they go to doctor’s appointments, etc.
Monday, Dec. 5, 2011
Nanette and her family, including her two girls Sonora (3) and Sahara (19 months), have been visiting since Thanksgiving week. It has filled our house with laughter, fun, and many wonderful memories. Unfortunately, Raynan is still exhausted from events within the last couple of weeks so it’s been a little rough on her. It seems like her “battery” never quite gets fully recharged. She had her Pegasys shot this week but unfortunately Doug came down with laryngitis and Raynan’s speech therapy class had to be canceled this week.
Monday, Nov. 21, 2011
This has been a rough week for Raynan. Last weekend was a busy one with a family wedding/birthday/reunion and things haven’t slowed down much. This week we’ve been keeping little Sahara, Nanette’s adorable and energetic 19-month-old. Unfortunately, Raynan hasn’t felt quite up to par. She had fever and chills, forcing her to cancel her speech therapy session this week.
On Friday, she had a long-standing appointment with her GP, who told her that she is doing remarkably well for someone who was discharged from the hospital to die. It’s been over a year since she’s had any strokes or bleeding. We are so thankful!
Sunday, Nov. 13, 2011
Raynan’s speech therapist said that from now on they will be dealing with more complex skills like mental manipulation and compensatory strategies for helping Raynan’s short-term memory. The therapist was pleased with Raynan’s progress in memorizing a list of emergency numbers like Doug’s cell phone, Nathalie’s cell phone, and the home phone.
At the doctor’s, Raynan got another shot and the nurse went over the week’s bloodwork. It’s still looking better than it has in years and Raynan continues to experience very few negative side effects.
We had a Jeter family wedding/reunion/birthday celebration in Branson over the weekend and we were very happy that Raynan was able to attend some of the celebration.
Saturday, Nov 5, 2011
Last Monday, Raynan had an ultrasound that revealed that through this new treatment and prayer her spleen has shrunk by 25% in 3 months!! Praise the Lord! The nurse practicioner who interpreted the results said that Raynan seems to be reacting to the Pegasys treatment better than any other patient he’s seen. Thank you again for your prayers and please continue to pray that her spleen will shrink down to its normal size. This is the first documented medical evidence we’ve had that God is healing Raynan.
However, doctors warn us that the fragile varicose veins in her esophagus, stomach and abdomen are irreversible; therefore, she is still at risk for a hemmorrhage. Also, the clots in her brain and her spleen still pose a risk because they won’t go away by natural means and could lead to another stroke. We continue to keep a watchful eye on her.
In other news, Raynan’s speech therapist says she is making progress in the area of memory and recall. Raynan’s long-term memory is good but the therapist is giving her strategies for facilitating recall in the short-term, like using the five senses, reasoning, “sounds like,” and visual learning as memory tools.
Her thirteenth shot of Pegasys (pegylated interferon) went well and she continues to be relatively free of negative side effects, as far as we can tell.
Friday, Oct 28, 2011
We took a long, leisurely drive in the hills around Branson last Sunday afternoon looking at fall foliage. Although Raynan enjoyed the drive at the time, it seems that instead of reinvigorating her, being out that long may have worn her out. She had headaches, nausea and fatigue for the next few days, but seems to be doing better now. The reports from her doctors’ appointments are good, though her platelet count was up again this week, which in her particular case is not desirable.
She has an ultrasound scheduled for Monday morning: they will measure her spleen and compare it to what it was at the beginning of her treatment. We are hoping and praying for a measurable difference!
Friday, Oct 21, 2011
No big news this week, except the good news that Raynan continues to impress her doctors. Raynan’s speech therapist is pleased with her progress and gave her a report card of sorts, showing her specific areas in which she’s improved over the last few weeks.
The blood test results at her weekly oncologist/hematologist appointment came back basically good. She’s still not experiencing any of the predicted negative side effects and even the rash at the injection sight on her arm seems to be getting better. She was given the shot in her stomach again and will probably continue getting it there since it doesn’t seem to cause redness or swelling like in her arm.
And, in honor of the first frost of the season, Doug and Raynan both got their flu shots.
Friday, Oct. 14, 2011
Raynan’s speech therapist says she continues to improve. Each week, the therapist puts her through series of helpful exercises meant to improve her memory, like recalling facts of a story, remembering important phone numbers, or remembering the names of people in photos. Doug and Nathalie are wondering where they can go to sign up for these classes as well.
During her weekly doctor’s visit, Raynan got her 10th shot — but this time it was administered in her stomach. She says it didn’t hurt. The reason for the switch is that rashes were forming around the injection sites in her arms, even though they were alternating arms weekly. We’ll be watching to see if the same thing occurs around her stomach.
Before her shots began, the doctor informed us about all the bad side effects that this drug could cause and prepared us for the worse. We are so thankful that Raynan is taking so well to the medicine and that, other than the first night, she has had very few negative side effects. One of the predictions was that she would have less energy and feel lethargic, but the treatment seems to be having the opposite effect. Thank you for praying!
Friday, Oct. 7, 2011
Raynan had an eye doctor appointment to see if the damage caused by last year’s strokes had gotten any worse. It hadn’t! The examination revealed that Raynan’s eyes are healthy. The doctor merely noted that whereas most people have only one blind spot, Raynan has two — one on each side — due to the strokes. Nothing can be done about it and it doesn’t bother her.
Her speech therapy session went well. The therapist says Raynan is doing very well and that her words seem to be clearer and more intelligible. She’d like Raynan to continue with another series of sessions that will take her through the next 3 months. They’ll be working especially on intelligibility and memory.
Raynan had her 9th shot of pegylated interferon. She is now at 90 mcg, her highest dose, which they plan to keep her on for the duration of the treatment. The treatment seems effective so far and her blood counts and other numbers are looking better.
Thursday, Sept. 29, 2011
Raynan’s speech therapy went well today but she reports that it’s draining! Each week, the therapist puts her through a number of mental exercises that pull from resources that haven’t been pulled from in a while. The therapist reported that Raynan has made progress in her speech since she first began therapy in July, even though they’ve mostly been concentrating on her memory and not directly on her speech.
She got another shot of Pegasys today at the oncologist’s, along with more bloodwork. Good news on the bloodwork: there are fewer things out of range than at the beginning of the treatment — a couple of areas that are too low and a couple that are too high, but overall the results are much improved. Praise the Lord!
Tuesday, Sept. 27, 2011
Last Thursday was a good day at the doctor’s office. Besides getting her weekly injection, Raynan was able to meet with her oncologist for the first time since the new treatment started seven weeks ago. The doctor seemed pleased overall with how Raynan is reacting to the medicine. He said her blood counts were better and he seemed to feel a reduction in the size of her spleen. This is great news since her spleen had grown to twice its normal size due to the blood disease. The doctor has scheduled an ultrasound for the first week in November to confirm the progress. Please pray that it will continue to shrink!
Friday, Sept. 16, 2011
Yesterday Raynan went for her weekly blood test and her sixth injection of Pegasys. Her blood counts were more or less stable and even her glucose level has come back down to normal. However, the last couple of weeks she has experienced an intense, maddening itching. Next Thursday we have an appointment with the oncologist. He will check on her progress in all areas.
Raynan’s speech and memory therapy session went well.
Thursday, Sept. 8, 2011
All of Raynan’s doctors appointments have been narrowed down to one day: Thursday. She has a speech therapy. Her speech therapist has been working with her on memory-related issues caused by the stroke. Today, the therapist helped her with remembering important phone numbers and put her through several exercises dealing with remembering words, like words in a series and items on a grocery list.
At the oncologist’s, Raynan underwent her weekly bloodwork and evaluation, then got her 5th shot of Pegasys. Some of her blood counts have gotten a little better, but there seems to be some slight concern over her glucose levels. They’ve made an appointment with the doctor to look into this more closely.
Thursday, August 18, 2011
The UVB light treatments have been stopped while Raynan is having the weekly shots of interferon, which make her more sensitive to light.
Friday, August 12, 2011
Raynan had an ultrasound on her spleen so that the doctor will be able to measure her progress in the shrinking of the spleen. Her doctor will monitor her progress weekly in all areas, and we will be observing her as well to see if there are any side effects with her treatment. The most common ones are flu-like symptoms and fatigue.
Thursday, August 11, 2011
Had her first weekly shot of pegylated interferon. No noticeable side effects early on but nausea and some other symptoms developed towards evening. She had to ride it out without medicine because she couldn’t have anything by mouth after midnight due to her ultrasound the next morning.
Monday, August 8, 2011
We made a trip to St. Louis to consult with our specialist, Dr. DiPersio. He recommended:
1) That Raynan have a couple of blood transfusions to help her iron deficiency anemia
2) That she go on a treatment of pegylated interferon alpha 2 (also known as Pegasys), a drug that would help address the base problem of her disease, the uncontrolled proliferation of red blood cells, as well as reduce the size of her spleen, which is currently twice its normal size) and reduce pruritis (uncontrollable itching). The problem was that weekly injections cost $600.
Praise Report: Our local oncologist/hematologist applied to a foundation that would possibly underwrite the expense for Raynan’s shots ($600/week). We received a letter of denial from the Foundation. It seems that they would underwrite the treatment for other forms of cancer, but not Polycythemia Vera. Our doctor, Dr. Ellis, then wrote a letter of appeal, stating that in Raynan’s case it was a medical necessity. On Monday of last week Dr. Ellis’ office received a second denial letter from the Foundation. Then, miraculously, the next day his office received a fax from the Foundation saying they had changed their policy, and they would completely underwrite all of Raynan’s expenses!
Thursday, July 21, 2011
Raynan started her first speech therapy session to help remedy the results of the stroke on her speech and memory.
Wednesday May 4, 2011
Raynan started thrice-weekly chemolight therapy skin treatments (narrow band UVB) for pruritis — the uncontrollable, maddening itching common to many patients with Polycythemia Vera..