Amy's Stem Cell Transplant

Myelofibrosis is a rare disease in which a reaction to a defective line of stem cells causes a fibrous build up in the bone marrow and the bone thickens to fill in the marrow cavity. Eventually production of new blood cells shuts down and the patient becomes dependent on transfusions to survive.

Amy was transferred to the care of Dr. Carlos DeCastro at Duke who monitored the progression of the disease. The chart below shows how the disease progressed in terms of HGB level (and now, how she is recovering post transplant!). While the disease was progressing, Bob was researching and learning as much as possible. Consultations were held with doctors at Duke, Mayo Clinic in Rochester, MD Anderson in Houston, Johns Hopkins in Baltimore, City of Hope in Los Angeles, and the Fred Hutchinson Cancer Research Center in Seattle, among others.

Amy's father had all relevant family members tested to be bone marrow donors, but none was a match. A worldwide search of potential donors yielded only one possible donor, a 45 year old male who was a close but not exact match.

The Fred Hutchinson Cancer Research Center in Seattle was selected to perform the transplant based on their transplantation experience.

May 1, 2006

Can't believe that it has been over ten months since I last posted! I've had a hard time deciding to how to begin this update. On the medical front - I am feeling great - probably in the best physical shape ever, and my blood counts are all normal. However I have been unable to get off cyclosporine. The taper last summer went well until August when my health took a wild turn (more on that later). After stabilizing I began a new taper in February which lasted only one week before I had a GVHD flare - so I am still taking 150 mg twice a day. In March I had a change in long term follow-up doctors since Dr. Sullivan is now managing a large grant for a SCT research project for an autoimmune disease. I've switched to Dr. Chao, head of the ABMT at Duke, whose expertise is in GVHD. Bob and I were both pleased after our initial visit with him. We questioned him about being on cyclosporine forever (my assumption based on not being able to taper off.) Dr. Chao told us that some patients are able to get off after two years and then a large group at five years, however for the rest it tapers out over seven to ten years. Any damage done by GVHD is irreversible but he said by the end of ten years GVHD will generally burn itself out. Wonderful news!! "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17

So exactly what was that wild turn I mentioned? Well last summer I began exercising about three times a week at a local gym - thought I was doing pretty well except for dry eyes and muscle spasms in my jaw. Then it was if I fell apart. First there was waking at 4 AM with severe chest pains and making a trip to the emergency room - wasn't a heart attack but was misdiagnosed as pleurisy for which I took an antibiotic, an anti-inflammatory and a pain killer. About five days later I developed an itchy rash on my chest and blood tests showed my liver functions were eight times normal - upped the cyclosporine a little. About a week later I developed pain in my ears - was put back on an antibiotic. A recheck of my liver functions revealed no improvement - in fact they were now ten times normal, but no change in my cyclosporine dosage as the antibiotic could be a factor. Around first of September I woke up with pain in my right shoulder - figured I slept on it funny. By the next day it was severe, hard as a rock and going into my neck. Muscle relaxers, pain killers, heat, etc. brought no relief and I was scheduled to begin cervical traction therapy. Oh yes, in addition a large bruise with a lump in it appeared on my right breast - turned out to be just a bruise who knows how I got that. Fortunately before I began the cervical therapy I developed some odd bumps on my chest and face - some itchy and some tender - which by the time I got to the doctor were everywhere. The GVHD in my liver was totally out of control and I had the varicella zoster virus, i.e., shingles. The VZV was quite a surprise since I was four years post-transplant and it was spectacular - disseminated everywhere. So I was put in isolation on the transplant floor at Duke (which compares quite favorably with Seattle's), given IV anti-viral medication for four days and of course went back up to 150 mg of cyclosporine twice per day. Although it took several weeks to get over the tiredness, I have not had any residual pain. God is soo good! "But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint." Psalm 40:31

For the muscle spasms in my jaw I tried wearing a splint 24/7, neuromuscular trigger point therapy, hot yoga and liquid vitamins. The latter proved to be the most beneficial and after a little tweaking I am no longer experiencing spasms. I was allergy tested last November and the results showed that I had no significant allergies. In other words, my new immune system is much better than my old one - thank you Mike!! In fact the only real issue left is the eyes. I have had punctal plugs put in the lower tear ducts three times - different types but they keep coming out - and the upper tear ducts once. The bottom line is that GVHD activity has damaged my lacrimal gland so that my tear production is next to nothing. I am currently on a regimen of steroid drops and Restasis. So far there has not been much improvement so we are all trying to find creative ways to get moisture in my eyes. Dr. Chao wondered if wearing swimmers goggles filled with sterile saline solution to bed would work. Tried it but couldn't keep the fluid in or get comfortable enough to sleep. Then I tried taping sterile saline solution soaked gauze pads to both eyes and wearing a sleep mask over that. Bob has been a good sport about all of this - first I looked like a bug with the goggles and then the Lone Ranger without eyes - real sexy!! The bottom line is the only thing that helps is to rest my eyes for at least an hour each day and use Refresh Plus, Systane Free and Genteal Gel throughout the day and Liquid Gel and Refresh PM at night. I've given up on wearing mascara - even waterproof. "Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don't look at the troubles we see right now; rather we look forward to what we have not seen. For the troubles we see will soon be over, but the joys to come will last forever." 2 Corinthians 4:17-18

Other than medical - I resumed exercising with a personal trainer at the gym near the end of October. As a result I have seen an improvement in my overall strength and stamina - was able to ski three days at Beaver Creek in January! Also I I find it is easier to keep weight off - obviously this is something I should have done long ago. Having the right personal trainer does several things - gets me to the gym regularly, helps me get the most out of the workout without hurting myself (then I would have an excuse not to exercise), and encourages and motivates me to improve - thanks Sam.
Besides skiing I have made a few other trips including - flying to Kansas City with Bob last September (just a few days after getting out of the hospital) to visit Aunt Marg and Uncle George; attending a Church Leadership Conference in Atlanta in October; and just recently driving with Bob and Oliver to Miami to spend Easter with Laura.

Other than traveling I stay busy with overseeing home improvement projects, our church, So all in all I am enjoying this gift of life each and every day. "Glorify the Lord with me; let us exalt his name together." Psalm 34:3

June 21, 2005

I have been having some software problems that have made updating a little slower.

I have been tapering the cyclosporine since April and my last blood tests were all normal!!!!! In fact, Dr. Sullivan said they were downright boring - so at long last I was given the okay to get a puppy. Oh God is sooo good!!

My friend, Joan, and I drove down to check out the puppies at a dachshund breeder just outside of Siler City. My intention was to pick out another "Snoopy" (i.e., a smooth, red male) but Oliver picked me out instead. After Bob and I got back from a wedding in Nashville we picked Oliver up and brought him home. It's a bit like having a baby in the house - we are still trying to get him on our schedule. Also he follows me everywhere and doesn't want me out of his sight unless he is doing something he is not suppose to. Gets a little tiring sometimes but I am still thrilled.

While Bob attended a conference in Louisville, I went with a friend to visit the Millices in Knoxville. I haven't played on the floor with a 3 year old in a long time and I can tell you I was worn out after two days!

But it was great fun! I sang a duet with my friend Hank (Shine on Us) and a solo (Knowing You) in the annual Spring Concert. Although I was a bit nervous I found singing about God to be a real blessing because that's what I love to do!

"God, you did everything you promised, and I'm thanking you with all my heart. You pulled me from the brink of death, my feet from the cliff-edge of doom. Now I stroll at leisure with God in the sunlit field of life." Psalm 56:12-13

So what's been going on the last three months? On the medical front - let's call this The Good, the Bad and the Ugly! The good - my blood counts have been stable for nine months so I get to taper the cyclosporine beginning April 1st. If all goes well I should be off by November! As far as my knees - seems the kneecaps are out of alignment which has caused the wearing away of cartilage on the outside of each knee - basically like what happens to your tires when your car is out of alignment. The doctor feels that physical therapy (PT) will realign them and a regimen of ibuprofen and glucosamine/chondrontin will relieve pain and maybe even regenerate cartilage. I began PT in December. At first I thought my therapist's plan was to make my hips hurt so I would forget about my knees - and that was just when he was stretching me! However there has been some definite improvement. I did set my knees back a bit by going skiing in February, but what a miracle that I was able to go and to ski three of the five days!! (Almost didn't get to go because I got the "Raleigh crud" and the doctor told me I had to be better or couldn't go at all. Lots of prayers were said on my behalf and the rest is history!) In January I had my regular checkup with the dermatologist. He found two spots that were much darker than anything else on my back and while he didn't believe they were anything, he went ahead and biopsied them. To his and my surprise one turned out to be melanoma, stage 0 and the other was just abnormal. So after the ski trip I had outpatient surgery to remove both of them. Although I was told that to treat melanoma they have to cut down deep and then make sure that the margins are clear, I was a bit unprepared for the size of the incisions and the pain associated with it. Each incision was about 4 inches - so now in addition to the 8-inch scar from the gall bladder surgery, I have another 8 inches of scar (2 four inch sections) on my back - the ugly! I am doing great now and best of all the pathology came back that all the margins are clear! Praise God! So no further treatment is needed - just continue with my six month checkups and have a skin mapping. So actually there is no bad - just good and ugly!

Other than medical - we thoroughly enjoyed Laura's visit home at Christmas though it was too short! I sang a duet with a friend of mine at a retirement home before Christmas. I really enjoyed it - much less nervous. I hope to sing Hank again! Before she returned to Miami in mid-January, Laura and I drove down to Charlotte to see Heather. I stayed with Barre and Gilda while she hung out with Heather. We had a surprise snow of an inch in January. It came down while I was in a ski shop for maybe an hour. Couldn't believe it when I came out and worse yet was the fact that it became ice when it hit the road! My car kept sliding when I had the brake on so I finally pulled into a parking lot and called Bob - figured he could pick me up in late afternoon. We all assumed it would get better by then. Unfortunately it was absolute gridlock - took Bob four hours to drive what normally takes fifteen minutes. I was prepared to stay the night at Winn-Dixie - had a bench, plenty of food and water, etc. - and during my 7 hours I met a lot of interesting people and was asked to pray for some of them. Hmm!

Bob invited Heather to go with us skiing in Vail at the last minute. She was able to ski with Bob in the more challenging terrain. Actually it was a bit of a role reversal - she was the one waiting for us!! We skied Vail, Beaver Creek and Steamboat! February 27th was LifePointe's first anniversary. I took part in the celebration by singing with the newly-formed choir. It was a wonderful service and I look forward to other opportunities to participate in leading worship.

In March I drove to Charlotte to have a one-on-one visit with Heather - it was wonderful! And now I am looking forward to visiting Laura in Miami. Bob and I plan to drive down the week of April 4th. All in all it has been a great three months and I have much to be thankful for. God is sooo good!

"I will praise you, Lord my God, with my whole heart. I will glorify your name forevermore." Psalm 86:12

I am recovering a bit more slowly from the gall bladder surgery than anticipated since I had to have an open procedure rather than the laprascopic procedure that had been planned. Seems that I had lots of adhesions making the simpler procedure unsafe. There are three theories on why they were there but the bottom line was it was safer to do the open procedure - so I now have an eight-inch incision. I had the MRI on my knees this week and the good news is that I don't have arthritis or avascular necrosis; the bad news is that I have almost no cartilage on the outside of both knees. I am scheduled to see a Sports Medicine doctor on December 13th to see what my options are. I hope everyone had a wonderful Thanksgiving - we sure did! Laura arrived as a surprise to her Dad on the Tuesday before and Heather came in Wednesday evening. They prepared Thanksgiving dinner for us and Tom and then cleaned up. Since I couldn't, they put up the Christmas tree, decorated it and put out the outside lights. What a blessing from God children are!

Wow! I didn't realize it had been so long since I last posted! I hope everyone took that as a sign that all is well because it really has been. I did see Dr. Sullivan in October and my blood counts were good so I decided to tackle some annoyances - gall bladder and knees. I will be having my gall bladder out November 12th and a MRI of my knees November 22nd. I did manage to get a flu shot after waiting 6-1/2 hours- gotta be a record! At any rate I met a lot of great people and shared my story at least three times - must have been why God had me there. That's about it on the medical front. "Give thanks to the Lord, call on his name; make known among the nations what he has done." Psalm 105:1

Bob and I took two trips in October. The first was to Atlanta for the GA Tech-UM game. We picked up Heather in Charlotte, flew Laura in from Miami and stayed with my parents - sort of a family reunion. We had a great time but the visit was much too short. The third weekend in October we made the trip back to the New River trail in Virginia with the Bickels, Colvards, Ed, Alan & friends. This time everyone rode - including me! While I didn't do the 30-40 miles that almost everyone else did, I did ride 15 miles! I was rather proud of myself. We stayed a different B&B this year that was just off the Blue Ridge Parkway in VA and took in the Bluegrass Festival in Floyd, VA, Friday night. On the way home we stopped at Smith Mountain Lake. It is just as beautiful in the fall as summer. All in all, just like last year, we had lots of fun and lots of laughs!

"Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don't look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever." 2 Corinthians 4:17-18

My last visit to the doctor was at the end of July - my liver functions had returned to normal except for one which was only slightly off. So it appears that things have settled down. My skin may take a year to return to normal - I'm not too concerned since the discoloration is primarily on my torso which no one is going to see anyway. I will remain on the current dose of cyclosporine for nine months before trying to taper again. The best part - I don't have to see the doctor until October! Yeah!! On the spur of the moment I decided to celebrate my third anniversary post-transplant (August 7th) and all that God has done by throwing a party. It seemed like a good time to do it since it was five years ago about the same date that I was diagnosed and told I had one to five years to live. I tried to include everyone in the Raleigh area who had gone through this journey with me and my family. It was a wonderful celebration of life and God's goodness! Thanks to all of you who live outside of Raleigh - one of these days will celebrate with you too! With Laura's return to the University of Miami, the energy has once again been sucked out of the house. But before she left, we hosted a formal dinner party for her and her girl friends. Bob, Brandon, Marcus and I provided valet parking, food prep and service for the girls. It really was a lot of fun!

"Those who trust in the Lord are as secure as Mount Zion; they will not be defeated but will endure forever. Just as the mountains surround and protect Jerusalem, so the Lord surrounds and protects his people, both now and forever." Psalm 125:1-2

I would like to say that I hadn't posted because there wasn't much to report, but the truth is that I have had a slight bump in the road. When I last wrote, I was tapering the cyclosporine and everything was stable. However, at the end of May I was bitten on my back by some unknown insect. The area surrounding the bite became swollen and very red as well as itchy and tender to touch. The nurse checked it at the end of the first week to see if it looked like a target (Lymes Disease) - but it really didn't. So I tried putting Cortaid on it to help with the swelling and itching. By the middle of June I had developed an itchy rash on my back, and chest and the original bite size was still about 4-5 inches in diameter. When I saw Dr. DeCastro he didn't think it was GVHD but had tests done to see if it might be Rocky Mountain Spotted Fever or Lymes. He put me on an antibiotic to treat either one just in case. I decided to call Dr. Sullivan at the transplant center because my liver functions were all up which I knew could be an indication that it was GVHD. When I saw Dr. Sullivan the next day he was fairly confident that it was a reoccurrence of GVHD and thought that I should go back to the cyclosporine dose I was on in April when we began the taper. By the following week the rash had spread a little more and was maddeningly itchy. (Interestingly it never was on my legs or my forearms and only a few areas on my face.) I found if I took Benadryl every 4-6 hours rather than waiting until it got bad that offered some relief. In addition I tried Aveeno bath treatments, Aveeno lotion with steroids, and even ice packs - nothing really had much effect. So I went back to see Dr. Sullivan on June 25th - he did two skin biopsies to confirm the GVHD, found some evidence of it in my mouth and rechecked the liver functions. In addition he put me back on prednisone for a three weeks - 30 MG for 1st week, 20 MG for 2nd week, 10 MG for third week and then off. Almost immediately the itching stopped. After about a week the rash had stopped spreading and began fading some. I saw Dr. Sullivan again July 1 and although the rash is still evident as is the original bite site there is some improvement, the mouth is definitely better and some of the liver functions are better. So we are sticking with this current plan. Dr. Sullivan said that although there is no information that an insect bite could reactivate GVHD there are other external factors such as too much sun that can so I guess we will assume that the insect bite is the culprit. At any rate I feel good and I'm hopeful that I won't be on the prednisone after next week.

Okay, so what else has been going on since May 2nd? Heather graduated with honors from NC State on the 15th - my parents came and Laura made it home from Miami in time for it. We are all very proud of Heather for graduating on time even after taking a semester off to be with me in Seattle. Since graduation Heather has moved to Charlotte - she working three part-time jobs while continuing to look for something permanent. As I mentioned Laura is home for the summer. She went to the first session of summer school at NC State and has a part-time job as a hostess at a nearby restaurant. Knowing this will probably be the last summer she is home I am enjoying every minute! My picture above is from my recital in June - I sang "Someone Like You" from the musical Jekyll & Hyde which I selected because the words reminded me of my wonderful husband and on a deeper level my relationship with God. I actually was able to say something to that effect before I sang and still get through the song! I played tennis for the first time in three years last month and will be playing tonight with the same group from the neighborhood. I didn't do too badly considering the layoff, but I think my knees need new shocks! My timing was off at first but got better the longer I played. I've taken a couple of trips - one to Harker's Island with my small group and the other to Rock Hill to see the Mitchells over the Fourth. Had a great time both places and I managed to not get any sun much to Dr. Sullivan's surprise and relief. All in all the past two months have been good. Praise God for his constant care and love!

My visit with Dr. Sullivan was great - all my counts were normal except for the magnesium level which was too high. So I am getting to taper the cyclosporine with the goal of being off of it by August. At that point all I will have to take is a multi-vitamin! WOW! He also took me off bactrim and magnesium. However, after a week my magnesium level took a nosedive so I have resumed taking it for at least another two weeks when it will be retested. God is sooooo good!!!

Nothing to report on the medical front since I haven't seen a doctor since February - yeah!! I am due to see Dr. Sullivan next week and hopefully everything will still be stable. I am feeling great and looking more and more like my pre-transplant self. With Spring's arrival I am ready to reintroduce myself to my tennis racket - don't know how well I will play but I am ready to give it a try. A week ago I actually went bike riding with Bob's Sunday group - had to walk the bike up the hills but overall I didn't do too bad. I have been doing research for our office from home. It's great to be involved but not on a full-time basis. Our trip last month to Miami was wonderful! We had a great time visiting with Laura and meeting her friends. The weather was perfect - sunny, breezy 80 degrees. Another milestone was getting to go to the beach for a couple of hours one morning - haven't done that in three years. Driving to Miami wasn't too bad either - 13 hours - it seemed longer coming home. At the end of March I celebrated my 53rd birthday - what a blessing to be alive! "O Lord my God, you have done many miracles for us. Your plans for us are too numerous to list. If I tried to recite all your wonderful deeds, I would never come to the end of them." Psalm 40:5

What an interesting month and a half it has been! On the medical front - as a result of treatment for a sinus infection my liver enzyme tests jumped way up at the first of January. However, this week's results were all normal!!! I guess I will have to be careful in the future what antibiotic is prescribed. The weight is finally beginning to come off - 30 pounds so far. I am no longer taking fosamax and hope to begin tapering cyclosporine soon. I also don't have to see a doctor until mid-April! Now that is a real milestone. I obviously have more energy because I was able to remove ice from the driveway and shovel snow - three times so far this year. I also have been helping Tom with his move to Raleigh. The day the movers arrived was pretty harry, but I had made scale drawings of all the rooms of his new townhouse and of his furniture so we could get the movers to put things in the right place. I spent two and a half days helping him unpack - probably overdid but recovered more quickly than I would have last year. At the first of this month I got to be a caregiver for Heather after she had her tonsils removed. (I like being on the other side of this caregiving thing!) She is doing fine now but it took a good eight days before she felt halfway okay. The doctor had told us it would be much tougher at her age and he really wasn't exaggerating! Bob and I have made plans to visit Laura in Miami in March - after all the snow and ice I am ready for some warm weather. "But I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me." Psalm 13:5-6

I didn't realize that it had been over a month since my last update. The news from December was all good - my blood counts remained stable so Dr. Sullivan took me off the prednisone completely. The only other medication change was raising my cyclosporine dose since my level was too low. I sang a solo in this year's Christmas Cantata. Although I admit to being nervous, it was nothing like past experiences. I guess my perspective has changed and I see it as an opportunity for God to use me. We had a great Christmas with both Heather and Laura at home. Then Tom, Bob's brother, came for a visit between Christmas and New Year's. He is planning to relocate to Raleigh in about two weeks and will be working for our company. So it looks like I will be returning to the office to do the training. Although I don't intend to work full time again, I am thrilled to be sharp enough to be able to do it. I am looking forward to more progress in this new year. "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit!" Romans 15:13

Yesterday I received the most exciting news - according to Dr. Sullivan I no longer have any clinical evidence of GVHD!!! He wants me to reduce the prednisone to 2.5 mg every other day beginning the first of December and believes I will be off of it entirely in January. Most of the restrictions have been lifted too - although I think I'll keep the handwashing habit and avoid shaking hands when possible, expecially during cold and flu season. I am planning to celebrate tomorrow by having a steak cooked medium. How amazing - four years ago the diagnosis was so grim and here I am cured and well. God is soooo good!! "What is impossible with men is possible with God." Luke 18:27

Bob's father died peacefully in his sleep October 29th - so Bob and I drove to Memphis for a few days. The rest of the month we have been at home just doing the usual things. However, we are planning to drive to Atlanta for Thanksgiving. My parents are flying Laura to Atlanta so we will get to visit with her too. It has been almost four months since we've seen her so I guess you could say we are a little excited. Happy Thanksgiving to all!

The results from the October blood tests were good - so I have stopped taking Acyclovir. Yeah! My platelets were at an all time high of 216 and the liver enzyme tests were stable. I had the colonoscopy yesterday and it was sooo much better than the first time! I didn't have to drink "Go Lightly" as prep and I don't remember anything about the procedure. The polyp was removed and nothing else was found. The procedure will be repeated again in three or ten years depending on what type of polyp it was. I began the dental work today - didn't have to be pre medicated - just routine procedure. I love that word "routine"! Bob and I had the opportunity to go with two other couples to a Mount Airy Bed & Breakfast for a long weekend of relaxing and "re-creating". The guys biked the New River trail in Virginia on Saturday - about 44 miles - while the girls took in the Autumn Leaves Festival in town. Although we were about a week early, there were still some pretty fall colors to see. As I was standing on top of a mountain overlook, I couldn't help but marvel at God's glorious creation. "The heavens declare the glory of God; the skies proclaim the work of his hands." Psalm 19:1

September 23, 2003

What a busy month it has been! Bob and I got Laura settled at the University of Miami in late August. I was very impressed with the campus and the school as a whole. We really miss her but she seems very happy so I can't be sad. Bob says the energy has been sucked out of the house - it is awfully quiet. I started taking voice lessons again this month and am part of a small group that my teacher has put together. Last week I gave a bridal shower for the daughter of my next door neighbor. It turned out very well even though it was last Thursday night after Hurricane Isabel blew through. The storm wasn't very bad here - just some big limbs down. This past weekend Bob and I went to Washington DC to celebrate the marriage of one of Bob's college friends. On the medical front - the bone density results were excellent so I got to stop taking the HRT. My prednisone was reduced to 7.5 mg every other day. My doctor had tests run for CMV and IGG level. I don't know the results but I am to be retested in October. If the CMV test is negative I get to stop taking Acyclovir. So it looks like bit by bit I am getting off all these medications. The other big improvement is that I don't have to see the doctor for two months. I will have a blood draw in October just to make sure everything is going well. During the past month I have had a GYN exam (everything was good), a dermatology exam (another basal cell carcinoma removed) and my first dental cleaning in two years. The dental cleaning was very quick much to everyone's amazement. I need to have a crown as there is a crack in a large filling but I am waiting to hear from the doctor whether I can have it and if so, what precautions I need to take. I have also been scheduled for a colonoscopy in October to remove a polyp that was found when I had the exam in Seattle. I am a bit apprehensive about the procedure since it wasn't a very pleasant experience the first time. However, I am in much better physical shape so hopefully that will help. Whether it is the "South Beach Diet" that Bob and I are on or the reduction in prednisone, the result is that I am finally beginning to see some reduction in weight and a difference in my clothes for which I am very thankful. I also feel a bit more energetic. And finally I had the gray fuzzy hair cut off so that my hair is looking almost normal. Isn't God good!! "And my God will meet all your needs according to his glorious riches in Christ Jesus." Philippians 4:19

August 12, 2003

Last Thursday was my second anniversary post transplant and Bob says now he can finally relax. On Friday I had the bone density exam, but I don't know the results yet. However, the blood tests were all good! I still haven't seen much difference in the fluid retention except in my hands - for the first time in over a year I can wear my wedding band! Since Laura got back from Mexico we have been shopping for UM stuff and trying to get things packed. We leave for Miami on the 20th. This past Sunday Laura and I, along with Joanna and Murray Spruill, sang the offertory at all three services. It was truly a special moment to be able to praise God with my daughter before she leaves for college. I'm sure Murray felt the same way about singing with Joanna. We sang "Grace, Greater Than All Our Sin." I thought about the words as I prepared and about how it is by Go d's grace that I am here today. What amazing love! "Marvelous grace of our loving Lord, grace that exceeds our sin and our guilt! Marvelous, infinite, matchless grace freely bestowed on all who believe!"
"My grace is sufficient for you, my power is made perfect in weakness." 2 Corinthians 11:28

July 25, 2003

I saw Dr. Sullivan at the first of July and he felt that I am doing very well. Those very important blood counts were all good, however, he wants to wait two months before dropping the prednisone. He doesn’t want a flare so he is erring on the side of caution – which is a good thing. I am scheduled for a bone mineral density exam August 8th. If the results are good I can go off the hormone replacement therapy, which I would prefer not to take, as I believe the risks are greater than the benefits at this point. Dr. Sullivan also decided that I would only need to see a doctor and have a blood draw every other month!!! Now that is quite a change from going twice a month. Much of the month I have been helping Laura get ready for her Mexico mission trip (where she is now) as well as beginning preparations for going to the University of Miami in August. Can’t quite believe Bob and I are going to be empty nesters! He is already saying that it is going to be too quiet. I also hosted two dinners this month – one for our small group from church and the other for our neighborhood dinner/tennis group. Well, it is hard to believe I am nearing the two-year mark (August 7th). I stay continually amazed at God’s provision, faithfulness and love. I recently had the pleasure of reading John Howarth’s web site. His stem cell transplant for MF was done six months before mine. We had followed his progress through postings on the MPD list site, and seeing how well he did, was a great source of encouragement and hope when we needed it most. God is so good. I encourage you to check out John’s journey – we both believe in the power of prayer. http://www3.telus.net/public/osseuse1/ “And we know that all things work together for good to them that love God.” Romans 8:28

June 26, 2003

Well after two months I am finally posting an update. I apologize for the delay but between technical difficulties (modem failure, for one) and all the activities associated with Laura's graduation from high school I just didn't get around to doing it. In May Dr. Sullivan told me I can only reduce the prednisone by 2.5 mg each time to avoid the risk of a flare. So for the last five weeks I have been on 12.5 mg every other day. This past Monday's blood tests were the best so far - everything was in the normal range. So as of today I can begin 10 mg every other day - yeah!! The past several weeks have been quite busy, but fun. One of the highlights was helping Laura get ready for her senior prom - she looked and felt beautiful. The following week we had my parents plus Charlie and Edie here for her graduation. The ceremony was very nice, almost intimate - quite different from a large public high school. There were several graduation celebrations to attend over that Saturday and Sunday followed by my voice recital Sunday evening. I did amazingly well despite nerves especially after I reminded myself that this wasn't the hardest thing I have ever done! The following weekend the whole family traveled to Bald Head Island, NC, for a special wedding. Actually we went a couple of days early so we could relax and just enjoy the island. The weekend of June 13-16 we were blessed with a long awaited visit from Aunt Marg and Uncle George. We hadn't seen them since I left for Seattle almost two years ago! Although I held up well during this period, it has taken me a few days to recover. Several of my devotions over the last two months have held significant meaning to me. One had to do with God's testing of Abraham. The author suggested that it wasn't that God needed to know how strong Abraham's faith was, because He already knew. It was Abraham that needed to know, that was why he was tested. So when we are tested, it is for our benefit so we know the strength of our faith. The other devotion that stands out was the one on God's faithfulness. It spoke about the importance of remembering that no matter what the circumstance that God is faithful. So I can say with confidence - I don't know when I will be off all these medications but God is faithful. This is where my hope, joy and strength comes! "I've told you these things for a purpose: that my joy might be your joy, and your joy wholly mature." John 15:11

Happy Easter!! What a difference a year makes! Last Easter was my first time back at church, and this year I was able to help lead worship at one of the services. As a result I have been reflecting on my progress. My energy level still fluctuates - afternoon naps are a very good thing! I am not as cold natured as I was last year - I actually wore a short-sleeved shirt when it was 72 outside. My hair is getting long and not quite so curly - I even had a little color snuck back into it! My skin is healthier looking, too. My singing voice is getting stronger - in fact my voice teacher says it is better than before the transplant! My mental acuity is much better although it diminishes when I get overly tired. I still take both cyclosporine and prednisone to suppress my immune system. However, except for the allergy-related problems I have managed to avoid any sort of infections even though Bob has been sick. I admit that I am probably more cautious than some patients - when I go out I avoid for the most part buffets, salads and real crowded places. My blood tests have been very stable since my last posting - so the prednisone has been reduced to 15 mg every other day. I am still not seeing any real reduction in the edema, except for my face and hands. If I am able to keep reducing the prednisone by 5 mg, I just might be completely off of it by August. Now wouldn't that be wonderful! I am beginning to make long range plans. However, I am trying to not to lose my appreciation for each new day. As I learn of others who have not survived, I am humbled and feel that God has plans for me. So as we celebrate Christ's resurrection, I thank God for all his gifts and look forward to the working out of His will in my life. "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit!" Romans 15:13

The results of the retest on Monday are finally in and the news is great. The cyclosporine level is good, my blood chemistry is normal and the best news of all is that my liver functions are not only stable but actually normal!!! As a result my prednisone dosage has been lowered another 5 mg so that I am now taking 20 mg every other day! My doctor told me last year that I wouldn't see much reduction in the fluid retention until I got below 25 mg so I am hopeful that I will begin to see some results. "For the Lord is good and his love endures forever; his faithfulness continues through all generations." Psalm 100:5

The last week has been interesting. The results of my Thursday visit with Dr. Sullivan were mixed. The liver function tests that we have been watching so closely were stable which should have meant that I would taper the prednisone another 5 mg to 20 mg every other day. However, my cyclosporine level had apparently not been monitored as closely over the last couple of months and was so high that it had messed up my blood chemistry - i.e., bilirubin, glucose, creatinine, potassium levels were all too high! The good news is that after withholding cyclosporine for four days and stopping both the diuretic and potassium, my results on Monday were all normal. God is sooo good! I have restarted the cyclosporine at a lower dose and I will be retested this coming Monday. Overall I am feeling great - the congestion is finally gone! I was able to sing with Laura at the Women's Retreat at the end of February - that was a special treat! I think my energy level is beginning to get better, although I still need a nap in the afternoon. Tuesday night I went with some of the neighborhood ladies to dinner and then the theater to see "The Full Monty" - I really enjoyed visiting with friends and meeting new neighbors plus the play was very funny! "I will trust and not be afraid. The Lord, the Lord, is my strength and my song;" Isaiah 12:2

I had a great visit with my parents over the Valentine's Day weekend. However it was tiring and the chest congestion and cough became worse. A chest X-ray was clear so the doctor prescribed a different antibiotic which seems to be much more effective. I actually was able to sing a little this week. I went for a blood draw on Monday and so far my liver function tests are still stable. I pray that they will be the same next Thursday when I see the doctor so I can taper the prednisone some more. "Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

After four weeks at the lower dose of prednisone my liver function tests are still stable! So I get to taper the dosage by another 5 mg for next four weeks. God is good!! The only problem I have at present is sinus and chest congestion, which seems to be improving. I am planning to travel to Atlanta this weekend for my dad's 80th birthday. This will be the longest trip (other than going to Seattle) that I have taken since the transplant. Another step on the road to normal! Happy Valentine's Day to all.

I had great news this week - after ten days of the lower dose of prednisone, two of my liver function tests were normal and one was only slightly above normal!!! Praise God for His faithfulness! If the results are similar February 10th then I might get to decrease the dosage another 5 mg. "being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6

Last week's GVHD reassessment at the Duke Transplant Clinic went extremely well. My liver function tests, although not normal, are stable and my skin, mouth and eyes can be categorized as having mild GVHD. As a result Dr. Sullivan decided to let me decrease the prednisone dosage by 5 mg for the next month. Hopefully the liver functions will remain stable and I will be able to taper the prednisone some more. There is no exact science to this as everyone is different. My platelets were actually in the normal range - which is a good sign too! I can't quite shake the sinus problems that I have had so I had a series of X-rays last Friday. Otherwise I feel great and am ready for the next home project - a new front door. "And to the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast." I Peter 5:10

Good news to report - the liver function tests have stabilized over the past four weeks! I do not have to return until January 6th and then I am scheduled to have a reassessment of my GVHD on the 16th at the Duke Transplant Clinic. Hopefully if everything remains stable they will consider tapering the prednisone some more. We are still trying to clean up from the ice storm two weeks ago. There were tops of trees everywhere and it looked a lot like it did with Hurricane Fran - guess we could call this storm Fran on Ice! Since my last post the painting has been finished and, with Heather's help, the house is in its holiday dress. Paul stopped here for a brief visit on his way to Roanoke Rapids, I hadn't seen him since he visited when I was in the hospital in Seattle. My parents will be here for Christmas. It has been a year since I have seen them so I am really excited about their visit! The testimony for the Christmas Cantata was well received and what a joy it was for me to participate in the celebration this year! Thinking back to last December it truly is amazing what God has done! As we approach Christmas Day I pray that everyone will be able to reflect on the reason for this season and thank God for his gift to the world!
Merry Christmas!

The past two lab visits to Duke have shown a continued rise in my liver function tests. Not exactly what I wanted to hear - had a bit of a meltdown over it. However, I decided I have a choice on how I look at things and my choice is to continue to trust God and treasure each day as the gift it is. Over the past four weeks my house has been topsy turvy - first with getting new flooring downstairs and then replacing countertops in the kitchen and downstairs bath. There is still some painting to be done but hopefully we can clean things up and get ready for the holidays. I have been asked to give my testimony at this year's Christmas Cantata and I look forward to praising God for his faithfulness. "I will not die, but live and proclaim what the Lord has done." Psalm 118:17

My results from last week were somewhat mixed. My hemoglobin, white blood cell count, hematocrit and even my platelets were all good. However, my liver function tests have all gone up. The rise has occurred after I reached the 35 mg every other day so hopefully my body will adjust and settle back down. Obviously I will need to monitor the other areas where I have GVHD (mouth & skin) to see if I detect any changes. Otherwise I am doing great. I made a couple of college visits with Laura and have been overseeing new flooring in the house. "Give all your worries to him, because he cares about you." I Peter 5:7

My visit to Duke on Monday was good. Most of my blood counts are in the normal range except for the platelets. I am now at 35 mg of prednisone every other day and the liver function tests are normal to only slightly above normal. The only disappointment is that until the prednisone dosage is less than 25 mg every other day Dr. DeCastro indicated I probably would not see any real change with the edema. However, he decided to increase the diuretic to two twice per day to see if that will help. He also thought there could be a possibility that the tickle in my chest could be due to fluid buildup and not just allergy, so the diuretic might help that too. I need to begin checking my glucose level again as my non fasting level is high. Hopefully I won't have to take insulin again, but if I do I know that this is only temporary. I got four more immunizations (HepA, HepB & Hib boosters and Td) while I was there Monday.

The most exciting thing to happen in the last month was corresponding and talking with my donor!! :) Contrary to what the nurses in the hospital thought he is not from Europe but from Odessa, TX, which I think is pretty cool since I grew up in Houston. One of the things I learned is how Mike became a donor. Several years ago a 7 year old boy at his church was diagnosed with leukemia and he was tested at a drive his church had. Unfortunately no donor was found and the little boy died. However, Mike prayed that he would be a donor for someone. So when he was contacted as a possible match for me (probably after I went to Seattle for the consultation the year before the transplant) he had no hesitation about doing it. He gave blood so tests could be run and then was contacted that the recipient was not ready. Mike was asked to not donate blood for one year. He was contacted last year when I was ready. He told me that the injections he received to cause the body to force the stem cells into the peripheral blood did feel like having a case of the flu. He flew to Fort Worth to have the stem cells harvested over a two day period. As I have thought about his story I realize that God was at work preparing the way for me even before he had totally prepared me for this journey. I am deeply grateful to Mike for giving me such a precious gift and thankful to God for supplying all my needs! "Your Father knows what you need before you ask him." Matthew 6:8

The past month has been a busy one. The family traveled to Rock Hill, SC, to visit with Barre and Gilda Mitchell on Lake Wylie. As usual it was a totally relaxing visit and I actually got in the swimming pool for the first time in a year. Another milestone was the night I hit the tennis ball again. Bob said he felt like he was watching a miracle - it really felt good although I had a hard time trying to keep from running instinctively after everything. I started taking voice lessons again - didn't realize what a workout just breathing correctly was!! It will take awhile to get back up to speed but I am thrilled to be able to do it. Labor Day week Bob and I spent at Beech Mountain with our friends Charlie and Edie Copes. The weather was in the 70's so it was absolutely beautiful. I returned to Duke last Monday, September 9th, for a checkup. The results were great - hemoglobin 13.8 (unbelievable) and the liver function tests were all normal. Only my platelets are low and my cyclosporine level is high. I have started the prednisone taper and should be at about 35 mg every other day in mid-October. Hopefully, everything will remain stable and the edema will begin to decrease. I realized the other day that I actually now know how long my life was going to be - as Bob figures it I probably would not have made my 51st birthday. Each day is a precious gift and I thank God for each one! "Teach us to number our days aright, that we may gain a heart of wisdom." Psalm 90:12

Bob and I returned from Seattle late Saturday night and I spent most of yesterday and today resting. We were able to visit with Sonny and Celia Sunday before beginning tests bright and early last Monday. They took us to the Skagit Valley and then to Samish Bay where we had dinner at the Chuckanut Inn. It was wonderful to be with them again. Monday I had a fasting blood draw, bone marrow aspiration and biopsy, skin biopsy and a physical exam before lunch. After lunch I had a chest X-ray, pulmonary function test- felt like I was going to cough up my lung on one of the tests - and then went to the University of Washington Medical Center for an eye exam. I had not seen the ophthalmologist when I was there before but the most interesting thing was that she graduated from Trinity University and was there the same time I was- just a year behind! On Tuesday I had a bone density test, skin photos taken and vaccines. After lunch I returned to the clinic by myself (Bob got sick and couldn't go) for a meeting with the nutritionist. On Wednesday I had a gynecologist appointment - Bob didn't go at all because he felt terrible. In the afternoon he felt like walking to the waterfront but we were both tired when we returned. Thursday afternoon we met with the doctor to get the results of the tests. There weren't any real surprises which was good. There is no evidence of myelofibrosis - Praise the Lord! - and I have GVHD of the liver, skin and mouth (all previously known). I get to start the prednisone taper in September as planned so we can see if the prednisone worked. By October I should be down to 35 mg every other day until January when I will need to have another GVHD assessment. We are hoping that it can be done at Duke. While I am tapering I will need to be monitored at least every two weeks. My eyes are dry so I need to use artificial tears more than once a day, my bone density is above average, my lungs are stable and my immune function is low. I am suppose to get the little polyp removed that they found last year soon - I told the doctor that it was like childbirth - not enough time had elapsed for me to consider it! Bob asked him about coloring my hair - no, not until I am off both prednisone and cyclosporine. Can I get a dog? - only if I didn't cuddle it (may as well wait.) I can be around flowers and plants now - just can't handle them - and I can get in both the lake and pool as long as I don't immerse my head. So overall I am doing just great!

While we were at the clinic and the hospital Bob and I were able to visit and express our thanks to some of the very special people who took care of me. The first were the nurses in blood draw who couldn't get over the thickness of the hair! Then we ran into Dr. Tanya Wall who was one of my doctors while I was in the hospital. She was the one that was sitting on the end of the bed when I had the breathing crisis. We also saw the Blue Team scheduler, Joanne, and the Blue Team nurse, Diane, who actually recognized me without help. She gave me a big hug and wanted to know how Heather, Laura and Bob were doing as well as me. We went over to the hospital twice so we could see Juanita, Susan and the cleaning guy, Chuck. They all thought I looked wonderful and cried - apparently not many patients return and clearly it means a lot to them to know what happened after they leave the hospital. I saw two of the nurses, Clarice and Vicki, in the clinic infusion (where I spent so much time getting blood products!) on the last day I was there. More tears and hugs! And finally we visited with Dr. Storb, my last attending physician, for about 30 minutes. In addition to those special moments I experienced more of God's blessings by just sharing my presence with current patients. I represented hope to them. There was one who was having the same experience of constant infusions when no one else seem to - he was very excited to hear that I hadn't experienced that once I left Seattle. On Friday Bob and I took the Victoria Clipper to the San Juan Islands and Victoria. It was a beautiful trip although a bit tiring. As I have reflected on the past year I am continually amazed at the progress I have made, the faith building I have experienced and humbled by God's love for me. He never fails to keep His promise of providing me strength for each day and when I let go and become His instrument I am always blessed. "He has given us his very great and precious promises." 2 Peter 1:4

Yesterday I had my checkup at Duke - everything after four weeks looked good! I will not see Dr. DeCastro again until September after my visit to Seattle, which is scheduled for August 5-9. During the week I am in Seattle I will have a bone marrow aspiration, blood tests, pulmonary function tests, eye exam, oral exam and any other tests they feel will assess my immunologic reconstitution and chronic GVHD. I am feeling good except for the edema associated with the prednisone and that is more a nuisance than a problem. In fact I've decided that getting my mental alertness back is worth all the other inconveniences! Last week we went to Smith Mountain Lake, VA, where we rented a houseboat and wave runner for four days. Although I couldn't get in the water or the sun, it was a great family vacation! I did get to ride the wave runner in the early evening after a rainstorm one day, which I really enjoyed!! This past Sunday I sang with the choir for the first time as well as Praise Team. Since I also got up early Sunday morning to see Laura off on her mission trip I was pretty whipped by the time I got home from church. However a two hour nap did wonders! "The Lord is my strength and my song; he has become my salvation. He is my God, and I will praise him, my father's God, and I will exalt him." Exodus 15:2

Passed another milestone today - my catheter has been removed!!!! As Bob says I am no longer the bionic woman. The removal process was pretty much as Dr. DeCastro had described it except it took several tugs to get it out. The area is a little sore but should be fine in a couple of days. My hemoglobin was at an all time high 13.1 and my platelets are 142 which is near normal. The liver function tests were also normal. For the first time since I've been home I will get to wait four weeks before my next visit! During the past two weeks I helped Bob paint two bedrooms, we went to see Laura dance, I went out to dinner with the "choir" girls, went shopping with friends, and traveled to Greenville, SC, for a wedding. Although at times I have been tired I have done a fairly good job of listening to my body and cutting back on my activities for a few days in order to get my energy level back up. It is hard to believe that in another two months I will be back in Seattle for my one year checkup. What a miracle God has done in my life!!! "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17

I had a great visit at Duke yesterday! My platelets were back up - not quite normal but going in the right direction - and my liver function tests were all normal! Praise the Lord! The magnesium level is perfect so we talked about removing the catheter - maybe at the next visit. Sort of shocked me when the doctor told me he just tugs it out! Although I have some edema and still am bruising easily (I have a huge bruise on the top of my foot where I dropped a head of lettuce - even Dr. DeCastro raised his eyebrows about that. Although he wanted to know if I was practicing soccer with the lettuce!) otherwise my energy level is good. Last Friday/Saturday Bob and I with the help of a very good friend gave Laura an after Prom breakfast from midnight to 2 a.m. (I took a two hour nap in the early evening to keep from getting overly tired.) Although I was tired the next day, a two and half hour nap in the afternoon revitalized me. Sunday was busy first with church, then lunch out with friends, then a reception and then a baby shower - had to regroup again on Monday. However, I have felt good so with the weather warmer I have been out walking the neighborhood even the hills. I received news this week that Tom Nicholson died. Many of you may remember that I had asked that you pray for he and his wife back in October when he went home after cancer was discovered in his lung. Both he and Sally had the most wonderful spirits about them and I ask that you pray for Sally's peace and comfort. "My Father will give you whatever you ask in my name." John 16:23

I started to update this two days ago but decided to wait until I went to Duke today. My liver function test were all down - two were in the normal range - Praise the Lord! - the prednisone is obviously working. The magnesium level was normal so I don't have to add any more oral and don't need to infuse. The only problem is that my platelets are also down. Dr. DeCastro brought Dr. Sullivan (he used to be in Seattle at one time), the expert GVHD guy here, by to meet me and they will discuss the platelet situation with Seattle. As far as the prednisone's other affects I am happy to report that after almost four weeks my blood sugar levels have been normal, there has been a little swelling but it is minimal compared to the first time and I am bruising easily because prednisone makes the skin thin. My energy level has been so good that I have probably overextended myself a few times lately - helping with a surprise party and working in the attic to name a couple. So over the past several days I have made a point of getting some rest during the day. I am still working on decluttering and redecorating our home, which is really fun. I keep a notebook of ideas and research things on the internet that I see in magazines as well as check out the home improvement stores. I have rejoined the Praise Team as of this week. I had thought that it would be choir that I would go back to first because I didn't think I had enough breath strength for the other. As usual God has shown me he has a better plan - singing the songs that gave me strength through my journey and fewer people involved in rehearsals so less exposure to infections. "For my thoughts are not your thoughts, neither are your ways my ways,' declares the Lord. 'As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.'" Isaiah 55:8-9

Despite the fact I haven't posted in a couple of weeks I am actually doing super! Just as Seattle assured me I am not having the terrible side affects that I had previously. This is because I am in much better shape than I was after having lethal doses of chemo and I started on less than half the previous dose to begin with. After two weeks at 65 mg per day, I returned last Friday to Duke for blood tests. One of the liver function tests was significantly down so the prednisone is working (Praise God!) and I began the taper on Saturday. I seem to have a lot more energy now so I have been out and about more, although I know that I need to be extra vigilant since I am now on two immunosuppressive drugs. Last week Bob and I spent about five days in Hilton Head with Charlie and Edie Copes. Bob played golf a couple times, watched the Heritage Golf Tournament and rode his bicycle while I visited with Edie, went shopping and walked the beach one day. Tuesday we all went to Savannah - I was probably a little girl the last time I was there so it had certainly changed since I had been there. Charlie picked up crabs and shrimp while there. The last night we were there he prepared a big seafood meal - she crab soup, baked shrimp, and cajun boiled crab, shrimp, corn and potatoes - for ten people. Edie and I added a tossed salad and dessert. On the way home Thursday Bob and I toured Fripp Island where our neighbors have built a home. All in all the trip was a very restful. On Sunday I sang with the praise team for the first time since last July - we did "Lord I Lift Your Name on High" and "The Potter's Hand". I had wondered if I would be able to do them without crying because the words are so wonderful. God is so good because my heart was filled with such joy it was easy!

I have had a great couple of weeks - the soreness from the bronchitis and biopsy seem to be mostly behind me. I have been shopping, having lunch out, seeing friends, walking, going to church, laughing, etc. In other words enjoying myself and doing normal things. My blood counts were all in the normal range at the visit to Duke last Monday - even the hemoglobin! There is even the possibility that my central line might be removed as early as May! The liver function tests were elevated a little from the previous visit. My doctor was going to discuss this with Seattle but felt that we probably would just raise the cyclosporine dosage slightly. He planned to tell them that I looked great and felt great. So it was quite a shock when he called yesterday to tell me I have to go back on prednisone. Although I will not start out as high as I did in Seattle (less than half) there is still the potential for the same side affects - insulin dependence, swelling, muscle and bone loss to name a few. I will be on 65 mg for two weeks and then begin a six month taper. When I got off the phone with him I started crying - knew it was stupid but I couldn't help it. So I called a special friend to help me adjust my attitude. On her desk calendar was this verse - "But he knows the way that I take; when he has tested me, I will come forth as gold." Job 23:10 I thought back to other things I have learned on this journey - that God doesn't promise a smooth course, only straight and that I may not know God's plans but I do know that he is in control and that I just have to trust him. Later while I was out running errands I was listening to some praise choruses - these verses stood out. "Yes I will run the race till I see your face. Oh let me live in the glory of Your grace." And then this morning when I got up these verses popped into my head - "I'm alive and well, Your Spirit is within me because You died and rose again." God is so good and such a comfort and strength. So once again I am running the course with my focus forward!

Happy Easter!! Yesterday was such a special joy for me. After an absence of almost nine months I was able to attend church with my family. In addition to celebrating Christ's resurrection it was also my birthday and the anniversary of my decision to have the transplant. So it was a bit like celebrating my own rebirth. I thoroughly enjoyed seeing my church family and have to admit I was amused when several people didn't recognize me because of the curly gray hair. I had planned to sit in the projection booth but one of my devotions last week was about bold faith and I became convicted that I should sit with my family on the front row instead. Now I hope to attend every Sunday. As for the rest of last week I had a regular visit at Duke on Monday - everything was stable except the cyclosporine level was too low - so the dosage was raised. I did some shopping and had lunch with a friend on Tuesday, went grocery shopping on Wednesday and visited by phone with a friend on Thursday. Friday a good friend brought some long craved chicken salad and visited for a little bit. All in all it has been a marvelous week! "Everything is possible for him who believes." Mark 9:23 "What is impossible with men is possible with God." Luke 18:27

We received great news yesterday! At my visit with the liver doctor my biopsy showed acute GVHD rather than chronic and that it was already resolving itself. He called late afternoon to tell me that the results of the liver function tests were significantly lower and that he and my hematologist felt there was no reason to put me back on prednisone. He didn't know why exactly it was resolving itself but very happy about it. I told him that it was a direct answer to prayer. He called back about 30 minutes later when he heard from Seattle and they agreed with my doctors here! God is so good!!! The only change will be to raise my cyclosporine dosage by 25 mg twice per day. This Saturday night Bob and I are planning to attend a dinner at a neighbor's home with the tennis group. I am really looking forward to seeing everyone.

As promised the biopsy itself was quick and almost painless, however, the recovery was terrible! Two-thirds of the people who have a liver biopsy leave and have no real pain or discomfort. Unfortunately I was in the other group. I have a high tolerance for pain but this was more than I could handle and the Tylenol was not touching it. (It felt like my liver was having spasms - obviously it didn't like having a hole poked in it.) So after discovering that the pain medication I needed could not be called in, Bob, Heather and I headed to Duke's Emergency Room around 9:30 Monday night. We could readily see that it was going to be awhile so we sent Heather home since she had midterm tests on Tuesday. I had a chest x-ray, a CT scan of my liver and some blood tests. The result of the CT scan was that I have a small liver hematoma. It was 5 a.m. when I was finally given some pain medication and discharged. Needless to say Bob and I were worn out yesterday! The highlight of the emergency room visit were the blood test results - the liver function tests actually were down significantly (Praise God!) and my platelets and white blood counts are at all time highs!! I am feeling much better today - haven't needed any pain killer since last night. "How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are!" I John 3:1

The latest on the liver problem is that I am going to have a liver biopsy on Monday. I have been assured by the doctor that it is not as bad as a bone marrow biopsy although the procedure is somewhat similar. The biopsy will be used to confirm a diagnosis of chronic GVHD. If it is in fact GVHD, I would probably be put back on prednisone (not nearly as high as before) but would have to take it for approximately nine months. While I am not exactly thrilled with that prospect, I know that God is in control and He will continue to provide the strength I need for each step along the way to full recovery.

(Update by Bob) Based on preliminary test results and consultations with Amy's medical team in Seattle and her doctors at Duke, it is felt that Amy's liver problem discovered on Monday is chronic graft-versus-host disease (GVDH) as opposed to acute GVHD. Further testing over the next two weeks will be required to confirm this. The good news is that this is not immediately life threatening as opposed to the acute GVHD which she developed in Seattle following transplant. A treatment plan will developed over the next two weeks. Amy is fortunate to have the best medical team available and to have had God answer our prayers to heal her.

I am feeling much better this week - the earache is gone and the coughing and congestion have greatly improved. My visit at Duke yesterday was good for the most part. My platelets are now in the normal range, which leaves only my hemoglobin slightly below normal. My magnesium level was good so my doctor decided to discontinue the infusion!! I also get to cut out one of the blood pressure medications. The only bad news is that my liver function tests were really high. I will be seeing a liver specialist tomorrow to determine the cause. I haven't gotten out much in the last week but when I have, I've gone without my wig. I get varying reactions to my gray curls but for the most part it has been positive. "May those who fear you rejoice when they see me, for I have put my hope in your word." Psalm 119:74

I have just returned from Duke where I had a chest x-ray. I am still fighting an infection which started as bronchitis but now includes an ear infection. (I don't think I have had an ear infection since I was a child.) Last week was tough - first I was coughing so much that it feels like I pulled muscles in my sides and abdomen. Secondly I thought Bob was snoring in my ear but that turned out to be sounds coming from my chest along with a few wheezes and whistles. After a couple days of that I started taking a cough medicine that broke up the congestion in my chest and subdued the coughing. Since I was beginning to feel better I was a bit surprised when I woke up yesterday with an earache! However with a new antibiotic and ear drops for pain I'm sure in another week I'll be just fine. I know I am the eternal optimist! Needless to say I haven't been running around very much - did go to the grocery store last week, ran by the dance studio to sign something for Laura and went out to eat with Laura early Monday evening. In one of my devotions in the last week I came across an interesting idea - God has promised that he will make our path straight - not necessarily smooth or easy - but it will lead directly to where He wants us to go. When you think about it that is a wonderful promise - certainly better than wandering in circles! "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight." Proverbs 3:5-6

Sorry I have been so long in posting. Last Monday I had a transabdominal and an endovaginal pelvic ultrasound to determine the thickness of the lining of my uterus. The endovaginal part was interesting. The results were to be faxed to Seattle for review. On Wednesday last week I woke up with a tickle in my chest and by the evening I was running a low grade fever and felt I was getting bronchitis. After several phone calls to Duke and Seattle, it was decided that I would go to Duke first thing Thursday morning unless I got worse during the night. The doctor confirmed my diagnosis Thursday morning, gave me a prescription for a Z-pak, had some blood cultures done and sent me home to rest. I awoke with a horrible sinus headache Friday and then vomiting on Saturday. By Sunday I actually felt human again and went out for a little while with Laura. Today I had my regular visit at Duke - my counts were stable although the platelets had dropped slightly. A couple of the liver function tests were elevated probably due to the antibiotic I'm taking. The magnesium level was high so the infusion will be cut in half - yeah!! I feel really fortunate that I haven't had any sort of sinus infection or bronchitis until now when my immune system seems better able to fight it off. On Saturday I felt so horrific I wanted to be shot, but then I thought how stupid - I didn't go through all this just to be defeated by a little infection - attitude check time!! And once again God's strength sustained me and comforted me. "Whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24

My visit to Duke was great - my blood counts are getting near normal (low end of normal). My cyclosporine level was low but my liver function tests were much better. As for the magnesium, we are going to try gradually raising the oral magnesium in hopes that I can get off of the infusion. The highlight of the past week was sneaking into church Sunday night to hear Laura and her friend, Jaime, sing at the Youth Dinner Theater. I sat in the projection booth upstairs out of sight and listened to them. It was so special!! Last week I discovered how vain I am. I found out from the Long Term Followup Team in Seattle that I cannot color my hair until I am off the cyclosporine! I hate to admit it but I was really upset since my hair is coming in very gray all over. Pretransplant I had some gray in the front but none in the back - so this is a little hard to get use to - no transition time. However, I understand the reasons and I am grateful that I am alive! "Rejoice in the Lord always. I will say it again: Rejoice!" Philippians 4:4

The results of the Hepatitis B and C tests were negative - praise the Lord! I continued working on decluttering last week - finally managed to find a good spot for my cookbooks other than a countertop! I also got to visit with friends in person and on the phone. One day I went shopping at North Hills Mall since I knew it wouldn't be crowded - it almost looks like a ghost town now! Last Saturday we enjoyed having friends over for supper - Bob grilled and I fixed the other stuff. I have also begun working on singing again. It takes a lot of energy but practice will improve that. Victory Chant, No Higher Calling, Shine, Jesus, Shine, Eagle's Wings, and The Power of Your Love were the ones I worked on. I still tire easily and have to avoid infections but, it really is wonderful to begin doing normal things again. "He gives strength to the weary and increases the power of the weak." Isaiah 40:29

Yesterday's visit at Duke went well - my blood counts continue to climb. My bilirubin was down slightly and one of the liver function tests was lower - that's all good. We are still waiting on the results of the hepatitis tests. My doctor reduced the cyclosporine dosage - hopefully this will reduce the need for magnesium. He also said he couldn't feel my spleen. I am continuing to get out and go places when they aren't crowded including lunches with friends. The decluttering is still going on - I have a totally empty drawer in the kitchen now, which is not going to become a junk drawer!

"Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you." Isaiah 46:4

Over the past week I have gotten out a little more. I had lunch with friends on three occasions and did some furniture shopping. Thursday night I was able to go with Bob to a small group meeting at another friend's home. I still have to be careful and avoid crowds but it is fun to be with friends. I am still working on decluttering and reorganizing the house - no chance for boredom with this much clutter!! Tomorrow is Laura's birthday - I can't believe my baby will be 17. What a blessing she is to all of us!

Last week I did the grocery shopping by myself. Heather dropped me off and Bob picked me up and brought everything in. The shopping itself wasn't bad - but having to put it all away wiped me out. However, I consider that a major step toward normality. On Saturday I went to the office to work on some accounting. I had planned to be there just a couple of hours but found an error in the August payroll - ended up spending about four hours instead. Yesterday I went to Duke - my counts were up some more - hemoglobin was 11.1! The only concern is my liver function. When I return in two weeks they will check for hepatitis - hopefully that will be ruled out.

The results of my Duke visit last week were great! All my blood counts were up including my hemoglobin which was 9.9 - don't think it has been that high in two years without a transfusion! Also my IGG level was normal so I didn't need an infusion of that either. The magnesium level was high so the doctor decided to drop one of the infusions - yea! Wednesday morning I went out on a few errands by myself before the snow arrived. By Thursday we had a lovely blanket of snow and were snowbound. Laura went sledding with neighbors while I finished organizing the den bookshelves. I finally got out over the weekend with Bob. Today Zana and Debbie came to help me pack away all the Christmas stuff - friends are God's special blessings!

I hope everyone had a wonderful Christmas - we sure did! The best gift of all was just being together under one roof. On Christmas Eve I was able to fix a few special food items (didn't require much cutting) that the girls wanted so we had a little party after the usual visit by Santa on the fire truck in the neighborhood. Also it was wonderful to see many of my neighbors while we waited for Santa.

As for the rest of the week: One day I worked on cleaning out old costumes and emptying bookshelves until I was worn out. Another day I organized home videos. Friday was Bob's birthday and I actually drove myself to buy a few gifts. Saturday we celebrated Bob's birthday by going to dinner with some friends who were visiting from out of town. Today I went shopping with Bob and Laura until I dropped!!

Tomorrow Bob is going with me to Duke which will probably be an all afternoon thing. It will be interesting to see what my blood counts are and whether I need any blood products.

The devotions for the last two days from Streams in the Desert were wonderful. Yesterday's was about the need to have what the author called "appropriating faith." We need to claim God's promises and make His Word our own. Over the past five months I have begun to learn what this means, however the author's words convicted me - "Pick any word you want that He has spoken and say, 'That word is my word.' Put your finger on a promise and say, 'It is mine.' By how many of His promises have you signed your name and said, 'This has been fulfilled to me'? Do not miss your inheritance through your own neglect."

Today's was about the "secret of believing prayer." The author says - "Insurmountable difficulties will disappear and adverse circumstances will turn favorable once you learn to pray - not with your own faith but with the faith of God. Emergencies call for intense prayer." I am so grateful to those prayer warriors who prayed week after week for my recovery while I was in Seattle - I am the evidence of the power of intense prayer!!

"So Peter was kept in prison, but the church was earnestly praying to God for him." Acts 12:5

This past week was a good one. Monday's visit at Duke went well except for the wait to see the doctor. The CMV results were negative, my platelets and white blood counts were up and my hemoglobin and hematocrit were also up a little - so I didn't have to go back Tuesday for a blood transfusion - yeah!! The doctor has now put me on an every other week visit. On Wednesday and Thursday we had a visit from a long time friend which was fun. Then Thursday night I went out to dinner with some friends from choir - lots of laughter. Laura took me to do a few last minute Christmas things yesterday so now I am through and can just sit back and enjoy the season. This past week's devotions from Streams in the Desert were especially meaningful. Here are some of the verses -

"In all these things we are more than conquerors through him who loved us." Romans 8:37

My visit at Duke on Monday was good although we had to wait a lot longer this time to see the doctor. I am anticipating having to get red blood this coming Tuesday but other than that my counts are relatively stable. I was able to go to Laura's choral concert on Monday night because her choral director arranged for me to sit in the sound booth upstairs. It was wonderful to be able to participate in one of her activities! My parents were here this week for a visit. I really enjoyed seeing them and I think they were pleased with my progress. For most of their visit it looked a lot like Seattle weather here but Friday it cleared up so Daddy joined me on a walk. Later Daddy took me to a couple of stores, the cleaners and Goodwill. Although it was a bit tiring I enjoyed getting out. Today I went to the office for the first time since I got back - spent about an hour there getting some information off of my laptop. This afternoon I took 27 pictures of the girls in hopes of getting something usable for a Christmas card - this was the second attempt! I hope everyone is enjoying the holiday season and remembering the reason for the season!

After catching up on other things, Bob had time today to put the necessary software on Laura's computer so I can now update the web site on a weekly basis. I am enjoying being home although it is a bit weird being an observer and not a participant! I have begun doing more things for myself such as fixing my breakfast and lunch and doing the laundry. It is odd how doing those things wear me out but over time I am sure I will get stronger. I am finding that when I am resting I spot my next task - such as emptying a bookshelf or redecorating a room.

My two visits to Duke have gone well and the results of the CMV test have been promising - only two cells per slide compared to four per slide when I left Seattle. (If there are five or more I would have to go back on gancyclovir.) The first week my magnesium level was high so Dr. DeCastro reduced the infusion to once per day. This week it was low so I'm back to twice daily but he reduced the oral magnesium from twelve pills per day to four in hopes of decreasing the diarrhea.

We are getting lots of help from friends and our church family. The church is providing two meals per week which is a big help to all of us. The house is all decorated for Christmas thanks to Zana!! (I don't think it has ever been done this early because I was too busy preparing for the Christmas musical at church.) I still have to avoid crowds for at least six months but I have enjoyed visiting with friends - even went out for a late lunch twice last week! I had forgotten how hilly my neighborhood is but I am walking every day on the more or less level areas and enjoying North Carolina's sunshine!! Praise God for the sheer joy of being alive!!

(Posted by Bob) Amy arrived safely in Raleigh Thanksgiving evening after a 4.5 hour nonstop flight from Seattle. She and Heather are still on Seattle time so they are snoozing peacefully. While on the plane coming back, I reflected on how much more difficult this would have been for us had we not had all the help and support from our friends. Just yesterday for instance - From Sonny and Celia and Skip helping us get ourselves and our stuff to the plane in the rain, Sonny and Celia taking the stuff we couldn't get on the plane and Heather's car and helping with getting it back to Raleigh, to Pat and Selma for providing the "rocket" for our return (we averaged about 530 mph), to our friends in Raleigh who were there to welcome us and get us back to our home, and this is just scratching the surface of the help we have received - what more can I say other than we are very fortunate.

Amy's continuing recovery will take several months - its starts today with the delivery of specialized medical supplies to our home and a visit to Duke on Monday morning.

It was another rainy gray day in Seattle however it was a good day. This morning Heather and I went to the clinic for blood draw and then to the grocery store and the drug store. After lunch Bob and I took a walk in the rain around the neighborhood. While I took a nap Bob went shopping downtown and Heather did some more packing. When I got up Bob was back and Heather had gone shopping. Tonight was my last dinner in the apartment which caused me to reflect about the last five months. Knowing what I do now would I make the same decision - absolutely. To say that the experience has been difficult is an understatement and that it has been faith building is also an understatement. It was only through God's grace and strength that I could focus on something positive many days. I am looking forward to my return to Raleigh, although it will be quite a while before I can resume "my normal activities" - fatigue continues to be a problem, plus my suppressed immune system makes me susceptible to infections. I am confident that "he who began a good work in me will carry it on to completion until the day of Christ Jesus." Phil. 1:6

The Summary Conference with Dr. Storb was today. He reviewed the results of all the tests, gave us his recommendations for my long term recovery and answered questions. I thought the most interesting thing he told us was the chromosome findings from my July bone marrow biopsy. Without going into all the detail, the gist of what he said was that a major change was rapidly taking place to a more serious disease such as AML! All I could think when he said that was - isn't God's timing perfect!! I've been singing "Give Thanks" ever since!

Today was a better day than yesterday. I cleaned and changed the dressing on my catheter exit - didn't do it as well as my caregivers but it was adequate. After a two hour nap and lunch, I folded some sheets, emptied the dishwasher, started a load of laundry and took out the garbage - and then had to sit down! Sonny and Celia came over while Heather went to pick up Bob. After Bob (who looks great since he shaved his beard) arrived the five of us went out to dinner.

I was really excited when I woke this morning because the sun was out and I didn't have to go to the clinic at all! However as I have to remind myself I am still going to have some not so good days. After a leisurely breakfast and shower I decided to walk with Gilda to the grocery store before lunch. While there I started feeling bad and by the time I got back all I could do was lie down. By this evening I felt better but of course we had missed the opportunity to enjoy the weather. Gilda is leaving tomorrow morning - it has been both fun and a blessing to have her here. She has spoiled me by giving me a foot massage every morning! Bob arrives tomorrow afternoon. I pray that both of them will have safe travel.

I had a good clinic visit with the doctors today - everything is still a go for leaving Thanksgiving Day! My blood counts have been stable - in fact my platelets actually were up today as compared to earlier in the week! They plan to tank me up next Wednesday before I leave. The doctor also said he might start the cyclosporine taper next week! This afternoon Gilda and I walked around the neighborhood and included a stop at St. James Cathedral. "Not by might, nor by power, but by my spirit, says the Lord Almighty." Zechariah 4:6

Today was another rainy gray day for the most part - the kind of day that makes you want to curl up with a good book. Since I only had a chest X-ray today, the three of us read until lunch. After a nap this afternoon, Gilda and I went for a walk - stopped in at the bookstore since Gilda finished her book today. Then we found a new Italian restaurant that had takeout - so we selected some items for dinner tonight and then finished our walk. All in all it was a great day! "Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:4

After the blood draw at the clinic we returned to the apartment to hook up the pump. I started one of the new books I got when I went out for my solo walk. After lunch Heather and I began the process of packing. After about an hour I was exhausted so I bailed out to take a nap. While I was napping Heather went to Fridays and got some more boxes. After dinner we packed some more. Heather is still at it but I'm exhausted so I'm off to bed.

I had another good night's sleep last night and then a good day today. Gilda and I went downstairs to the exercise room since it was raining rather hard. I walked on the treadmill for about 16 minutes and then used one of those bikes that has the seat with a back. My summary clinic has been set for next Monday and my discharge clinic for the 21st. If all continues to go well, I will be returning home on Thanksgiving Day!

I slept very well last night - four hour increments!!! A blood draw this morning was the only thing I had at the clinic today. After a nap this afternoon I went for a walk by myself while Gilda went to pick up Heather from work. I walked around the neighborhood and stopped at both the drug store and a book store before returning to the apartment. It wasn't that long ago that I had to hold on to someone to get around! Thank God for His daily strengthening!

After blood draw this morning, I did strengthening exercises while hooked up to the pump and then took a nap before lunch. This afternoon Heather, Gilda and I went to see "Serendipity" - we thought it was real cute. It's probably a chick flick! After the movie we went out to eat at Elliott's. We had a great view of the ferries from our window and the food was great too! Praise God for a great day!

I slept much better last night so I started the day much more rested. After going to the clinic for a blood draw, Gilda and I went shopping. This afternoon I had a two hour nap - so I think I am beginning to recover from my sleep depravation. Tomorrow we are thinking of going to a matinee and then out to dinner.

Still didn't sleep soundly last night but I probably got more sleep than the night before. I discussed this during my doctors' visit today and they think it might be due to the increase in magnesium. Hopefully my body will adjust to the new levels. The infusion thresholds for platelets and red blood cells have been lowered, so we will see if I can maintain the new levels over the next week. This afternoon Heather, Gilda and I walked around the neighborhood. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

We arrived at the clinic about 9:15 this morning for blood draw and then I had the usual Thursday chest X-ray. By 10:15 I was hooked up and receiving the first unit of red blood cells. Since I didn't sleep very much last night I tried to nap but there was so much noise I didn't get much sleep. I was finished with the last unit by 3 p.m. and got back to the apartment around 3:30. I finally slept for an hour before going to physical therapy. We ordered pizza when we got back. Hopefully I will get a good night's rest tonight so I am more alert tomorrow.

Today was about like yesterday - blood draw and platelets. Tomorrow will be full as I will be getting red blood as well as having some appointments. This afternoon Heather and I went to the Hiram Chittenden Locks in Ballard to walk. We got to see some boats and a barge go through and there was a nice park to walk in.

Not much to report today - just blood draw and platelets at the clinic. In the late afternoon Heather, Gilda and I went to Volunteer Park to walk. Bob reported on his conversation with my new doctor - didn't add much to what I already knew except that we're shooting for November 19th as the new release date. However I am still taking things one day at a time and trusting God for the rest. I also had a nice long chat with Laura this evening - that was very special!

I had a great day today. The results of the clinic visit were that there is no GVHD in my colon and the small polyp they found was benign; the internal hemorrhoids do not need treatment; the GVHD of the skin is mild so I don't have to go back on prednisone; the two tests that show how much of the stem cells are the donor's showed 98% and 100% donor cells; and the bone density test showed both my spine and hips to be in great shape more like someone younger than 50! The doctor also felt that my blood situation would stabilize in the next one to two weeks and when it does then I will be released - that was comforting. I did have to have platelets after the visit. Gilda and I decided to celebrate all the good news by going out to dinner tonight. "Is anything too hard for the Lord?" Genesis 18:14

We had another relatively leisurely day - just had to get platelets in the afternoon. While I was there the long term follow-up PA stopped by and gave me a preliminary report from my colonoscopy. She said that I have internal hemorrhoids but she did not have the results from the two biopsies that they did. She also indicated that there was a possibility that I might have to go back on prednisone for GVHD of the skin. I should find out about that and the results of the various tests tomorrow at my clinic visit. When we got back to the apartment, Gilda and I worked on Heather's birthday dinner. I made the chocolate chip cookie cake. Can't believe I have a 20 year old daughter! But I am so thankful to God for this beautiful gift!

Although I did have to go to the clinic in the afternoon for platelets, Gilda and I were able to go to Volunteer Park this afternoon and then to Blockbuster and the grocery store. I think it was the first time in a week that I actually got to get out! It was wonderful to be out in the fresh air and not at the clinic!! Praise God for His answer to prayer.

I have finally recovered from the colonoscopy that I had today. I am not sure which was worse the gallon of "Go Lightly" (someone's sick joke of a name) that I had to drink last night, the procedure itself or the aftermath! At any rate I finally began recovering around 5 tonight. Tomorrow is suppose to be just a blood draw in the morning. I hope and pray for a leisurely day! It is also Heather's 20th birthday!

I saw some of the most adorable children in costume today at the clinic. A Halloween party had been arranged for the pediatric transplant patients, children of transplant patients and children of staff. And yes, I spent the whole day at the clinic again - receiving two units of blood and platelets. I don't need any more G shots and the coagulation problem has been resolved, however, the need for red blood remains a problem. Judy leaves in the morning and I hate that most of the time she was here we spent in the clinic, but what a blessing and comfort she has been!

Another day at the clinic all day - left at 7:50 p.m. When I arrived at the clinic at 1 p.m. this afternoon I knew I was getting platelets and one unit of red blood today and another tomorrow. However, they had a surprise for me - I also received four bags of plasma and some potassium. The plasma helps with coagulation which they hope will resolve the blood in the stool problem. I also was told that I will be going home with the central line still in - wasn't really surprised by that. "Let us run with patience." Hebrews 12:1

Since Judy has been here we have spent almost every day in the clinic all day long - today was no exception. I knew that I was receiving immunoglobin and possibly a G shot but I had no idea how long the immunoglobin would take. Well it seems that it takes about four hours! They also worked in some platelets while I was there. The silver lining was that I got a great nap because they gave me benadryl and something else before the immunoglobin! We got back around 7:30 to find Heather had already prepared dinner for us! My devotion today was from Malachi 3:3 -"He will sit as a refiner and purifier of silver." I have read this before but never thought about the fact that the refiner never leaves the fire or allows it to get too hot. He is constantly watching the metal as it becomes pure. How much more does our Father who never slumbers watch and care for us!!

We had a beautiful, although chilly, sunny day here in Seattle today. I received the second unit of red blood today, the G shot plus some more platelets - they have decided to raise the threshold on the platelet level. I also have been taken off the gancyclovir. This should help my counts to rise although not immediately. Since we started a little earlier today I was actually able to get in a good walk after a nap this afternoon. The devotion from Streams in the Desert was very interesting to me - it had to do with being still and trusting God in the midst of turmoil. It compared it to the calm of the eye of the hurricane - what a great mental picture.

I had an unplanned long day at the clinic today. We arrived around 10:15 for a blood draw and then waited for the results to see if I needed another shot. Not only did I need the shot but I also needed both platelets and red blood. The platelets arrived around 12:30 p.m. but the red blood didn't get there until almost 3 p.m. I only had one unit today so I will need to get the second one tomorrow. I discovered blood in my stool this morning so this will be checked out by a GI doctor on Monday. The doctor on call and the attending physician did not seem particularly concerned so hopefully it is not anything serious.

Barring any unforeseen circumstances my release date has been set for November 9th. At my doctors' visit today the bone marrow pathology and skin biopsy reports were reviewed. I was told the bone marrow showed improved cellularity, a slight decrease in fibrosis. and no blasts. The skin biopsy showed mild GVHD and they are evaluating what to do. I no longer have to take insulin or prick my finger to check my blood sugar level, plus the blood pressure medication has been reduced and the flucanizole has been stopped. After the clinic visits we ate at the clinic cafe before going to get a bone density scan at another location. Although I am excited about coming home there is also a little concern. I will have to be seen frequently at Duke, will need some extra care at home, may still have infusions and may still have the central line in. However I know that God is in control and He has been my strength through all of this and will continue to be as He has promised.

Yesterday began with a blood draw in the morning. I received a call from the clinic just before lunch that I needed red blood cells again. We set it up for 2 p.m. with the idea that I would take the IV tree to my gynecology appointment at 3:15. When I arrived at 2 the blood wasn't there, it arrived at 3 but was the wrong type. So I went to the other appointment then began receiving blood about 4 p.m. I left the clinic around 6 p.m. after receiving just one unit so I could eat dinner, hook up a pump and take medication. Then Heather, Judy and I went to the hospital at 8 p.m. so I could receive the other unit of blood. It was about 11:30 by the time I got to bed. This morning I had a MRI at 7:45 a.m., then returned to the apartment for breakfast. Judy and I were at the clinic by 9:45 for an oral medicine appointment. The rest of the morning was filled with clinic stops - X-ray, blood draw, GCSF shot, meeting with a research nurse about participating in a late CMV prevention study and the pharmacy. By the time we left the clinic around 1 p.m., I was exhausted. So after lunch I took a nice long nap! Here is a quote from St. Augustine I liked - "Understanding is the reward of faith. Therefore seek not to understand that you may believe, but believe that you may understand."

Today I had some pulmonary function tests. I did fine on three out of four, but the fourth one I had trouble with because of the allergy drainage. When I had so much trouble in the morning, the technician asked me to return early afternoon to try again. There was really no change in the results. After all that blowing and puffing I took a two hour nap, then went for a nice walk with Judy in the sunshine. "Not one word has failed of all the good promises he gave." I Kings 8:56

October 22, 2001 - Day +76

Everything went very smoothly today. I got through the aspiration and biopsy by singing "How Great Are You Lord." The skin biopsy didn't bother me at all but the eye test was very strange. First the nurse numbed my eyes then she stuck little strips of paper under the bottom of the eye. From my perspective it looked like two white pieces of paper sticking straight out of my eyes - very strange. The test was to measure my tearing capacity and I passed! Judy was there for all the tests and stayed for the red blood cells - we left about 4 p.m. We went for a short walk when we got back to the apartment. The reading from Streams in the Desert I especially liked today - "Beloved Father, help me to expect you as I travel the ordinary road of life. I am not asking for sensational experiences. Fellowship with me through my everyday work and service, and be my companion when I take an ordinary journey. And let my humble life be transformed by Your presence."

I really slept well last night - four hour stretches! This morning I had a blood draw and then returned for platelets in the afternoon. Tomorrow will be a tough day for me beginning with a fasting blood draw, then a bone marrow aspiration at 9:30 in the morning. I also will be having a skin biopsy and some sort of eye test. At 11 a.m. I am scheduled for two units of red blood - so it will be about 2 p.m. before I will leave the clinic. Please pray that all will go well and that I won't be a grump by the time I'm through! Bob left early this morning and Laura will leave early tomorrow morning. It was so wonderful to be together as a family, hopefully it won't be too long until we are all back in Raleigh! "He gives strength to the weary, and increases the power of the weak." Isaiah 40:29

Today has been a very good day. We all slept late and did everything at a much more unhurried pace. This afternoon Heather, Laura and I went for a walk. I'm not sure what was exercised more my legs or my stomach from laughing at them! They are pretty funny when they are together! This evening we are going to Sonny and Celia's home for dinner which should be fun.

I spent most of the day at the clinic today. First there was blood draw at 9 a.m. then the visit with the doctors at 10:45. The visit lasted until almost noon because we were discussing the upcoming tests next week and long term recovery. I had to go back to blood draw for a type and cross so that I could get two units of red blood this afternoon. We then had to meet with the nutritionist before returning to the apartment for lunch around 1:40. The red blood cells were started around 2:45 and I got home about 7:30 this evening. Looking at the bright side, I don't have to go to the clinic tomorrow at all!

I started with a chest X-ray this morning at the clinic around 10 a.m. When I got back I did my strengthening exercises. Laura arrived safe and sound around 12:30 - it is wonderful to have her here! This is the first time since August that the whole family has been together. Late this afternoon Bob and I walked to the grocery store - that was a push for me. It became even more so when we walked up the escalator since it wasn't running! "Now to him who is able to do immeasurably more than all we ask, or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20

Today was a little more leisurely since there were no clinic visits scheduled. Bob and I went for a walk in the morning before lunch. In the afternoon we went to the physical therapist where I was given some more strengthening exercises. The therapist also had me get on a machine that exercised both my arms and legs - I was able to do it for about nine minutes. Afterwards my legs felt sort of rubbery - I definitely have a ways to go! Laura is arriving tomorrow and both Heather and I are really looking forward to seeing her! "The Lord is faithful to all his promises and loving toward all he has made." Psalm 145:13

The only thing I had at the clinic was a blood draw this morning and I don't have to go at all tomorrow! Yeah! Since it was raining, Bob and I went to REI to wander around and then to the grocery store to buy a pumpkin. The REI store here is huge and it was interesting to see. In my devotion today from Streams in the Desert the verse was - "Let us throw off everything that hinders and the sin that so easily entangles, and let us run with perserverance the race marked out for us." Hebrews 12:1 The interesting thing was that the writer talked about how being discouraged or discontent, although not a sin, can be a distraction and drag us down; and the importance of putting your faith and trust in God. In going through this process there have been a few days when I have been discouraged but I praise God that He has helped me find something good about the day - I certainly could not have done it on my own.

Today began with good news - a call from the clinic saying I didn't need to come in at all! I did all my physical therapy exercises this morning and then took two walks this afternoon. On one of the walks Bob and I visited St. James Cathedral - I even walked up the front steps to get in! The cathedral was really beautiful and while we were there the organist began practicing so we had some music too. While I was taking a nap this afternoon Bob and Heather went down to Pike's Place Market and brought back some Alaskan shrimp for dinner. They were delicious! "I wait for the Lord, my soul waits, and in his word I put my hope." Psalm 130:5

I began the day with a blood draw and then waited about 30 minutes to see if I would need another shot. I didn't have to because the counts were above where they wanted them!! Thank you Lord! After Bob and I left the clinic we went to Larry's Market to look around and then returned to the apartment for lunch and hook up to the pump. Everyone took an afternoon nap and then Bob and I went for a walk in Volunteer Park. This evening Bob and I went out to eat at an Italian restaurant that the nutritionist had recommended. Although in some ways I was apprehensive, it was really great to be able to get out and be normal!! It has been a month since Bob last saw me and his reaction to how much I have improved puts things in perspective for me. "Give thanks to the Lord, call on his name; make known among the nations what he has done. Sing to him, sing praise to him; tell of all his wonderful acts. Glory in his holy name; let the hearts of those who seek the Lord rejoice. Look to the Lord and his strength; seek his face always." Psalm 105:1-4

When I arrived at the clinic this morning at 9 a.m. there had been some problem with the type and cross they did yesterday so another one had to be done. So the blood didn't arrive until about 11:30. Since I was by myself - I walked around the clinic for a little while and did some of my exercises. Bob and Heather arrived in the afternoon with a stuffed animal - a dachshund - so I now have a lap dog! This evening Bob is in charge of dinner and the pumps. My devotion today was from Philippians 4:6 - "Do not be anxious about anything." Do you think there is a connection between Bob being in charge and the devotion! :) Just kidding! I am delighted that he is here!

Today has been very interesting and busy! We went to blood draw early only to find quite a wait so that by the time we returned to the apartment we had just enough time to hook up the pump and take the cyclosporine before returning to the clinic. The clinic visit with the doctors was good. They are pleased with my progress and are scheduling my evaluations a little earlier than Day 80 beginning on October 22. Although not a guarantee, I could be released November 5th! God is so good!! This afternoon I went with Linda to the grocery store - I couldn't believe how tiring that was! Afterwards it was back to the clinic for platelets and another growth factor shot. Tomorrow morning I am scheduled for two units of red blood cells and another shot. Linda is leaving tomorrow - it has been so much fun visiting with her over these two weeks :) - and Bob is arriving :)!

The weatherman had predicted rain all day but the it turned out to be a beautiful day! I received a phone call from my doctor early this morning to stop taking the potassium supplement and she also prescribed an antihistamine to help my allergies. The only other change in medication was a slight increase in the cyclosporine dosage after they checked the level today. So the time at the clinic was relatively short with just the blood draw and the usual Thursday X-ray. This afternoon Linda, Heather and I went to Green Lake Park to walk. There was a nice trail all around the lake - didn't make the whole thing - but we walked for about 45 minutes to an hour. I was worn out but so thankful for the beauty of God's creation and the strength He gives!

Today was fairly uneventful. I slept a little later than usual probably because it was dark and gray outside. and then went for a blood draw. In the late afternoon we went back for another growth factor shot and then we went to the library. I've been taken off another medication, Actigal - yeah! Yesterday it cleared off in the afternoon so Linda and I went to Volunteer Park and I'm pleased to say that I walked much further and faster than previous visits - even did several stairs while there!

I saw Sally Nicholson at the clinic today and Tom has lung cancer so they will be going home because there is nothing more that can be done. Please pray for strength and peace for them both.

Yesterday was incredibly long and tiring so I apologize for not posting. I already knew that I was to receive two unit of red blood cells in the afternoon at 2 p.m. but when we arrived I found out that I was to receive platelets and a growth factor shot also. Also the blood bank had been running behind all day so I might have to get the second unit of blood at the hospital sometime after 8 p.m. We were of course not prepared for all that news and I will admit to it was a little disconcerting. However the doctor stopped by and told me that the gancyclovir that I am taking causes the counts to drop. She reassured me that everything was going well and that I am producing all three stem cells. She also changed the insulin levels again. The first unit of red blood cells arrived about an hour late but praise the Lord - we were able to get everything done at the clinic by 8 p.m. when it closed so I didn't have to go to the hospital. Today I went to the clinic for a blood draw and another growth factor shot. Linda and I worked on a jigsaw puzzle before lunch and then I took a good nap. The sun is out now so we will probably take a walk this afternoon. The verse from Psalms yesterday that gave me comfort was - "When doubts filled my mind, your comfort gave me renewed hope and cheer." Psalm 94:19 Today - "Come, let us sing to the Lord! Let us give a joyous shout to the rock of our salvation! Let us come before him with thanksgiving. Let us sing him psalms of praise." Psalm 95:1-2

Today was the first really cool day we have had - highs in the 50's. Fortunately the fleece gloves and hat came yesterday so I was able to stay warm when I was outside. I had a blood draw this morning and then stopped at the nurse's station to report some drainage in my throat. It appears to be allergy but we need to watch it. Afterwards Linda and I stopped by the library so I could return the two books I read. It turned out that the book drop was down the stairs and on the opposite side of the building, which I was able to negotiate on my own. This afternoon Linda and I took a walk at a faster pace and included some more stairs. The clinic called late afternoon to let me know that I will be receiving two units of red blood cells tomorrow at 2 p.m. Hopefully it will not take as long as it did the last time. "Teach me your ways, O Lord, that I may live according to your truth! Grant me purity of heart, that I may honor you. With all my heart I will praise you, O Lord my God. I will give glory to our name forever, for your love for me is very great." Psalm 86:11-13

Today was a lazy day - just perfect! I slept late and when we did my blood sugar level it was below 100 so I didn't have to have any insulin at all this morning! In the afternoon Celia stopped by for a visit and brought one, three and five pound weights for me to use. Linda and I went for a walk around 4 p.m. including climbing some stairs and before dinner I worked on my strengthening exercises. I also finished another novel today. Tomorrow I have to go to the clinic for a blood draw primarily to check my platelet level. As I continue through Psalms - "Your righteousness, O God, reaches to the highest heavens. You have done such wonderful things. Who can compare with your, O God? You have allowed me to suffer much hardship, but you will restore me to life again and lift me up from the depths of the earth. You will restore me to even greater honor and comfort me once again. Then I will praise you with music and on the harp, because you are faithful to your promises, O God. I will sing for you with a lyre, O Holy One of Israel. I will shout for joy and sing your praise for you have redeemed me." Psalm 71:19-23

My clinic visit with the doctors was today and the report was good. My bilirubin is the lowest it has been, the weight is continuing to come off -my stomach is actually getting smaller :) - , no more long acting insulin, the cyclosporine level is where they want it, and my blood pressure is much better. The only concern is my continuing need for platelets which they are going to review. We've been keeping track at home when I have received them and it is getting longer in between. I am beginning to do little things that add normalcy to my life such as putting my own towels in my bathroom, spreading up my bed, taking my purse to the clinic, and putting my own clean clothes away. Linda fixed tuna noodle casserole tonight - brought back wonderful memories of home when my mother would fix it! I have been reading through Psalms and this verse stuck out to me tonight - "Praise the Lord; praise God our savior! For each day he carries us in his arms." Psalm 68:19

"Give all your worries and cares to God, for he cares about what happens to you." I Peter 5:7 It is wonderful to have a God who knows your needs and meets them without you asking. Today was another good day - beautiful weather and a reasonable schedule. I had a blood draw this morning and a chest X-ray then could return home to do the infusion. I fell sound asleep (a good thing since I hadn't slept very soundly last night) before lunch as did everyone else and woke up about 12:30. In the afternoon I met with the physical therapist. she was pleased with my progress and I asked for a few other exercises to do. I now have this very thin yellow tubing so I can do some resistance work. Linda and I took a walk in the late afternoon for about 30 minutes - even walked a few inclines. The blood sugar levels haven't been over 200 for several days which is great.

I started the day with blood draw early so that we could have the nurse take a look at my right eye which seemed to have hemorrhaged overnight. The doctor looked at it and said it wasn't a problem but that I needed to get platelets since they want to keep the level up. So we came home had lunch and then returned to the clinic. Afterwards I had a good nap and then had a great walk outside with Joan. We even did some stairs!! Tomorrow I go back to the physical therapist for some more exercises. I haven't heard anything about Tom yet - please continue to pray for him. Joan is leaving tomorrow and I will really miss her! She has been a such a special blessing to me! Knowing that God is in control and that He is providing me with the strength I need each day is both a comfort and a joy!

Spent most of the day at the clinic receiving red blood cells - got there about 10 a.m. and left about 3:45 p.m. However, I did my strengthening exercises there and walked when I got back. Please pray