VERY IMPORTANT NOTICE –As of May 20, 2023, The Shannon Mosher Memorial Foundation, Inc. (“Foundation”), established September 26, 2000, will no longer exist. Shannon died May 20, 2000 after her courageous battle, as chronicled in this website. This Website has been updated to reflect the change from an incorporated “Foundation” to a “Memorial” to Shannon and is designed to keep remembrance of her alive.

The website, shannonmoshermemorial.com, contains the uplifting story of how she faced a 15-month battle with leukemia, that included a bone marrow transplant, with great faith, courage, grace, humility, as well as her own special sense of humor, while dealing with the myriad of medical tests, procedures, setbacks and occasional bright moments.

Much of her story remains intact from the original website text on this website. It includes just a few of the many testimonials received from people who followed and were inspired by her story. It is hoped that Shannon’s story in this Memorial website will continue to be a blessing to many for years to come, especially for those who are facing a similar ordeal and their families who are looking for encouragement and inspiration.

Since the Foundation will no longer exist as of May 20, 2023, to the extent reasonably possible an effort has been made to delete many references to “Foundation” from all of the original website text.

NOTE: With that said, the figures shown on this updated Memorial website are carried over from the original website when the Foundation was in existence. Visitors to this website should just realize that any text, figures, and other information shown BEFORE May 20, 2023 are related to when the Foundation was in existence, and anything posted AFTER May 20, 2023 represents new material on this updated Memorial website. 

Patient Assistance

2/3/23

IMPORTANT NOTICE: Effective immediately, we will no longer process Applications for Patient Assistance. After over 21 years of providing various types of assistance to leukemia patients, such as financial grants and assistance with bone marrow donor drives, we find it necessary to proceed to “close up shop” which we plan will soon include filing Articles of Dissolution to cease all activities as a 501 (c)(3) non-profit Foundation. Age and health-related issues have helped us to reach this difficult decision.

2/3/23

As with the decision noted to our Board in February, 2021 to stop hosting Bone Marrow Drives due to a lack of any response to the totally digital drive held in 2020, we have also decided that we have run the course with actively seeking to provide financial assistance to leukemia patients. Age and some related health issues have also helped us to reach this decision. With that said, while we still operate briefly  as an incorporated Foundation, we'll try to process any reimbursement requests we receive, but we'll gradually begin to "close up shop" which we understand will finally involve filing Articles of Dissolution with the appropriate Florida and Georgia agencies.

History & Transplant

Below is some detailed information about the ordeal that Shannon and her family faced during the 15 months that she battled leukemia. Also included are the various Contribution Updates related to the fundraising efforts to raise funds to help with the leukemia and bone marrow transplant-related expenses that wouldn't be covered by Shannon's insurance.

 

 

News from Shannon - December 19, 1999
On the heels of my exciting letter of last month giving you a report of my excellent health, a new job that I absolutely love and an eye toward the future, I have some crushing news. Late in November, I went in for a "panic attack" check up with my oncologist because I was feeling like I needed a boost. My fears were confirmed when Dr. Lauer came into the room, head down and whispered "It's back. . ." My battle with Leukemia is far from over. After intensive, body damaging chemotherapy earlier this year, I enjoyed remission for eight short months - just long enough to get my life back on track. What does this mean? My disease is incurable with chemotherapy and I must undergo a life-threatening Bone Marrow Transplant (BMT) to have any hopes of long term disease-free survival.

 

Fortunately, I have the support of a wonderful company, Sprint PCS, and my job is not in danger. I have insurance coverage for the majority of the bills I will be facing, but more importantly to me: I still have my job. I'm more focused on the future and looking forward to continuing a job that I love (and spent months searching for) than I am of going through a potentially fatal transplant. I am writing this letter in the hopes that you will help increase my chances for a longer life with my family and friends by supporting me in raising funds so that I may have the BMT. My form of Leukemia is Acute Mylogenous Leukemia (AML) which is a form of cancer of the blood. Bone marrow produces three vital elements of your blood:

1) platelets, used for clotting;

2) red blood cells, used for carrying oxygen; and

3) white blood cells, used for fighting infection.

My bone marrow produces too many white cells that don't grow up to fight infection. Instead, they hang around and take up the space needed by platelets and red blood cells. I bruise at the drop of a hat (I could bleed to death from a minor cut or internal bleeding) and I am very anemic (pretty much fatigue myself getting up to answer the door.)

 

A BMT will significantly improve my chances to extend my life (although the procedure itself is life-threatening) by giving my body a "fresh start". The projected cost of the donor search, transplant (without complications), post-transplant medications and care for several months after my transplant, and other various related costs above those covered through my health insurance policy will likely exceed $100,000. I do not have the financial resources to pay the roughly $100,000+ that will still be needed.

 

My BMT will be performed at Brigham & Women's Hospital in Boston as soon as the required funds for the search and procurement of the donor marrow become available. A little side note here: I have a chromosomal disorder that is making it more difficult for me to find a match. Some say bad luck, I say "God made me special!" 

 

Shannon L. Mosher

 

Fundraising report - 12/20/99
To date we have sent $20,650 to NFT. We've still got a long way to go, but this is good news.

Fundraising report - 12/22/99
To date we have sent $33,800 to NFT.

 

News from Shannon - December 29, 1999
This morning I had a rather emotional morning at the doctor's office. I am in the third week post-chemotherapy, and my blood counts are still at zero. That means that my body is not producing new cells. It means one of two things: my body is just being slow to come back from the chemo or the leukemia is still present and is preventing any good cells from being produced. If it is the latter, the only course of action is another round of chemo using high-dose Ara-C (the same drug used last February) in the hopes that it will produce a remission. If not, then we're pretty much out of options. I've been really positive up until today and not even thinking that the chemo might not work. Now, I'm scared to death and wonder if I'll make it to Valentine's day 2000.

 

If my body is just being slow, then I just pray that it will get with the program and start making some good cells. I have to be in remission in order to have the bone marrow transplant. And, if I do go into remission, it's very likely that the remission will not last very long at all, since chemotherapy didn't get it originally. We've GOT to find a match for my bone marrow. If you want to print out a copy of my HLA blood typing from this site and take it to your doctor to see if you might be a match - please do so. I know the odds of someone I know being a match are against me, but what ISN'T against me at this point?

 

Shannon

 

News from Shannon - December 30, 1999
My my my, life is such a roller coaster. I spoke with Dr. Joe Antin at the Dana Farber Cancer Center today. We've faxed him my HLA typing, and I FedEx'ed all of my medical records, bone marrow slides, x-rays, and CT scans so he can review me without "me" actually being there. I want him to get going on the FORMAL search for a bone marrow donor without putting it off because I've been unable to travel. Still nothing in my blood counts as of this morning. Monday morning Dr. Lauer will perform a bone marrow biopsy to look deeper into the situation(literally!) For those of you who don't know what it's like I'll fill you in. You lay on your stomach, the doctor cleans and covers an area over your hip bone, gives a shot of lidocaine which feels like a bee sting; he shoots this in and around the bone where the extraction will take place. Once the area is numb, Dr.Lauer uses a long, steel needle (I think it's about a centemeter wide..) and sort of pushes and cork-screws it into your hip bone until "POP!" it hits the soft center part. (I should have warned that this is not for the weak stomached individual.) Once he's in there, a small amount of bone marrow "Juice" is extracted and put on a slide. It is in this marrow juice that Dr. Lauer will be able to see whether my body is producing any good white cells or if the leukemic cells are still present. Although most people say that a bone marrow biopsy is the worst pain they've ever experienced, I've had at least five or so and I've never felt a thing except the shot to numb it and the pressure of Dr. Lauer pushing the needle in. Hmmm. Well, I hope you all have a great New Year's celebration free from any Y2K problems!

Shannon

 

Fundraising report - 12/31/99
The fifth and final contributions deposit for 1999 was sent to NFT today...$15,380 in direct contributions, which gives us a year-end total of $63,950!! There were also 14 "matches" for another $4,080; this gives us a total of 33 matching gifts for a total of $7,330 that we would anticipate receiving about the end of the 1st quarter...this will more than cover NFT's maximum 5% administrative fee that they receive from the initial $100,000 raised. Also, we've now received 365 contributions from 18 states.

News from Shannon - January 3, 2000
I'm at Dr. Lauer's office - using my Sprint PCS phone to access the internet! I love my job - and the technology! It's just awesome. Well, Dr. Lauer performed the bone marrow biopsy about a half hour ago. It wasn't so bad. I have been dreading it all weekend. Now we wait a couple of days to get the results back. Please pray for healthy cells! I'm getting Rocefin, an antibiotic right now. I've been getting it daily for a month. I also get a shot of Leukine every day to try and "kick start" my bone marrow and get good cells growing. Sore arms, bruises all over them, and just the disruption of having to work my schedule around visits to the doctor's office can get pretty frustrating. Oh, and this morning, January 3, 2000 - I woke up with no water service. Niiice, huh? I laughed out loud to myself because that is such a NON problem in the whole scheme of things, but when added to my craziness, it makes me insane! My brother, Scott and I went to a New Year's eve party and had such a wonderful time. I was a little nervous about being around so many people (germs EVERYWHERE!) but I wanted to be out among people to celebrate. It was great, I met a lot of nice people and have some great photos, too. I'm having platelets today as well. One of the things you learn about when you have leukemia is blood counts. Normal blood counts are as follows: Hemaglobin = 12; Platelets = 145,000 and White Cells = 4000. Every day I have blood drawn from my port so Dr. Lauer can see where my blood counts are. Today I have less than 10,000 platelets (which is why I'm having a transfusion with lunch today) and my Hemaglobin is only 6.5! I'll be getting a blood transfusion tomorrow. By the way, I'm B Negative - which is pretty rare. So, if you want to help out and you're B Negative - go give blood! My white count is still nothing. Well, I'll give another update tomorrow.

 

News from Shannon - January 5, 2000
I don't know what I'm supposed to be gaining from my troubles with Leukemia. I know that adversity is supposed to make a person stronger, but this is becoming more than I can handle. I'm at Dr. Lauer's office (upbeat side note: again, I'm online using my Sprint PCS phone - very cool) and he looked at my bone marrow biopsy this morning. Results are that I still have Leukemia. There are a few good cells in the marrow with the leukemic cells, so he called it a "partial response" to the chemotherapy. Having said that, I am checking into Piedmont Hospital tomorrow morning for three more days of chemotherapy using a high dose of the drug I originally had in February, Ara-C. Please forgive me for being negative, but I honestly don't know how much more of this I can take - mentally. I'm 28 years old, supposedly in the prime of my life. I want to be working, making something of myself, doing the job that I love and doing it well. I want to be going out with my friends, fussing about relationships and cool clothes and shoes. I'd like to be able to bring plants into my apartment (my green thumb is shriveling up) and meet new people.

I was planning to buy a new car with all the money I'd be making in my sales position at Sprint PCS (a used BMW Z-3 Roadster is my choice). Instead, my life is a series of daily trips to the doctor's office, getting blood drawn, receiving antibiotics, a booster shot, going to the pharmacy and getting prescriptions weekly, being isolated in my apartment (which I do love and am so glad that I have my own place to go to) but unable to have personal contact with people and I am such a "people person", wondering what the next day will involve, will I receive information that is good or devastating? My disease is not only hard for me to deal with, but for my family. My mother, brothers, dad, step-mom, aunts, uncles and especially my grandmother - how much more stress can THEY withstand having to worry about me all the time. I affect their jobs and daily lives as well. I HATE that. I can't remember what it's like to be the happy and carefree person that I used to be. I spent a year searching for the perfect job and enjoyed four weeks of that kind of freedom, making plans and looking forward to the future. We're having a meeting tonight with the members of my Fundraising Committee. I wonder, will everyone's efforts be in vain? If I don't go back into remission, I can't have a bone marrow transplant. I could try experimental procedures or alternative treatment, but what kind of quality of life would that be? I have no fight in me today and I need encouragement from all of you to help me get through this.

 

Shannon

 

Fundraising report - 1/05/2000
The 6th deposit was transferred to NFT today, giving us a total to date of $80,370, with additional matching gifts to come from corporations. With these contributions it seems realistic that we can meet our initial goal of

$100,000 in the next week or two.

 

News from Shannon - January 6, 2000
WHOA! Please forgive the rash of negativity from me during the past few days. I just read the updates on my website and thought, "did that come from ME?" Well, for anyone who has or ever gets diagnosed with a form of cancer - it's okay to be upset about it FOR A VERY SHORT WHILE! Then it's time to get back to the norm of positive thoughts and goals. Everybody needs goals! I've settled into the hospital and have enjoyed a very relaxing day. I brought my own Toaster Struedels (apple flavor!)and cran-apple juice for breakfast every morning because believe me, you don't want to eat just hospital food when you're in here. so, my mom is bringing a great big fresh salad and some of her wonderful Southern sweet tea. It'll throw a diabetic into insulin shock but I absolutely love it. GOOD NEWS ALERT!! They drew blood early this morning and believe it or not, Dr. Lauer said they were the best I've had. Although there are a small amount of leukemic cells still present, about 80% of the cells are good cells. White count up to 300. But nevermind those figures 'cause we're gonna wipe them out again anyway! I'll be here until Sunday morning receiving six total doses of chemotherapy. Once tonight, twice a day on Fri. and Sat. and one early Sunday morning. Then I am free to go! The doc and I joked about having to put me into the hospital because all of the sick people are here with the flu. I don't need to be around them...I'm getting antibiotics daily, to keep any harmful germs from getting to me, but other than that, I sit in my room and play on the computer or sleep.

 

At least when I'm in my apartment, I'm making calls, moving around, and DOING something constantly versus the "veggie state" that I invariably go in while at the hospital. After this round of chemo it's back to the waiting game of a few weeks for my blood counts to come back LEUKEMIC FREE!!! I wanted to say thank you to everyone on my fundraising committee, it's unbelievable the response we've had. And also to everyone who sends me prayers and messages - believe me when i say that those prayers give me more strength and courage than you can imagine! Keep 'em coming. We talked about getting some corporate sponsors for my website and of course I want to see if my company, SPRINT PCS (HOME OF THE AMAZINGLY CLEAR NATIONWIDE VOICE AND INFORMATION SERVICE AFFORDABLE ENOUGH TO USE WHENEVER YOU WANT) might be interested. We'll see. In the meantime, if you have a business in Atlanta and are interested in wireless service for 5 lines or more, please feel free to email me at: smoshe01@sprintspectrum.com I thought of something else that was sort of funny that i have to do this week in the hospital. The high-dose of ARA-C that I'll be receiving can cause your eyeballs to literally bulge out of your skull. Do you remember that movie "Total Recall" with Arnold Schwartzenegger? I have to take these eyedrops every six hours or my eyes will swell and could explode like in the movie! Next thing you know, I'll have the "Matrix" inside my head and I'll be running along walls on the oncology floor.

 

News from Shannon - January 10, 2000
Well, spent Thursday - Sunday getting eight additional doses of chemotherapy. My hands are starting to turn red and the first few layers of skin will eventually peel completely off. It's literally a chemical burn from the drugs. Also, stomach not that great, everything tastes like metal and I've been feeling questionable for a couple of days. My commercial for the "chemo plan" as replayed for Dr. Lauer: "The chemo plan, drop thirty pounds in a month, get renewed skin with a free chemical peel and enjoy hair that grows back thick and fuller than ever before!" Yes, I'm crazy. My left arm is somewhat swollen and tight, Dr. says it could possibly be a blood clot? Feels like Nutty Professor, one hand is slim, the other is bloated - wierd. I have a date every morning at Dr. Lauer's office to get antibiotic and a booster shot. Now we're back to waiting to see if any leukemic cells come back with the good ones. Pray that they don't! My Sunday school class sent me this huge card with great prayers and words of encouragement on it - it was a great pick me up! I've attached a photo of my brother, Scott, and I eating at our favorite sushi restaraunt, RuSan's. He knows how much I crave sushi, he's the one to introduce me to it a year ago.

Contributions Update and Special Request from Stuart (Shannon's dad)- January 10, 2000
Today, the 7th deposit was sent to NFT in the amount of $7,645, plus there was an additional $880 in matching gifts that we should receive by the end of the first quarter. This brings us to $88,015 in direct receipts, plus a total of $9,535 in matching gifts since our first contribution was received 12/6/99...pretty incredible! Without much additional effort, the incoming mail the next couple of days or so should get us beyond our goal of $100,000. Instead of putting any additional focus on fundraising efforts the next 2-3 weeks, please spend as much of that time and energy as possible in lifting Shannon and our family up in prayer. Among other things, pray that we would remain strong, courageous and faithful in the face of this trial. It is our prayer that God would use His miraculous healing power to cure Shannon from this disease, and that it would be a powerful testimony of His love, grace and mercy to everyone who hears of it. Pray for Shannon's doctors and for wisdom as they evaluate the treatment options. Pray for our emotional well being as we deal with the ups and downs of what Shannon is going through.

In His precious love,
Stuart

 

News from Shannon - January 12, 2000
The past two days were spent sleeping, and I mean nothing but sleeping. My ears were ringing (Dr. Lauer says that's the drug moving all over the nerves in my brain - I could actually "hear" it). The sore muscles all over are doing a bit better today with the help of some Tylenol (prescribed most by physicians...). Still VERY low energy levels. Yesterday, I almost agreed to let Dr. Lauer check me back into the hospital just so I could rest, but then I really never get any REAL rest in the hospital because someone is always coming in the room to check on you. My bed is best!! A beautiful bed, compliments of my wonderful grandma (see picture) as she helped get my aparment set up last month. Had my morning date with the doc and my blood counts are doing what they're supposed to do. White count down to nothing (AGAIN), platelets are actually hanging in there around 18,000, and hemaglobin holding steady at 8.6. That's pretty amazing considering the toxicity of the Ara-C. I'll have platelet and blood transfusions as the levels drop down to critical levels. Dr. Lauer really made me feel great today when he said, "You're doing great, Shannon!" I felt really encouraged by that! Well, I'll send another update tomorrow. Oh, I've also attached a photo of my other brother, Derek, that I wanted on the website - he's 13 and the best little brother anyone could ever ask for! I love you Derek!

Shannon

 

News from Shannon - January 14, 2000
What a busy day! It felt great to actually WORK today and accomplish a few things. My friend, M.C., called me yesterday and said that "people just aren't buying advertising this month" and I told her "I would LOVE to be out there being rejected by prospects!!!!!" We're doing a video at Sprint PCS about how our Atlanta division will be the best in the nation in 2000. Our theme is Michael Jackson's "Beat It" and believe me - it's going to be so awesome! I just wish I had some of that high

quality digital production equipment like at WALB-TV so I could edit something spectacular!!!

 

Anyway, found out a lot of information about the Bone Marrow Registry process and we'll be having a Bone Marrow Drive in early February. Details to follow - check the website for updates. My friend, Robin Gelfenbein, is hosting a "Buds for Life" party at Park Bench in Buckhead at 6pm on Friday the 14th for anyone interested in having a beer and talking about bone marrow! You don't want to miss it! We'll be having a

Bud or two and visiting with Buds from around Atlanta. Should be excellent. I'll send an update tomorrow night.

Shannon

 

Contributions Update - January 14, 2000
I'm sending in the 8th deposit to NFT today which totals $4,740, plus matching gifts of $725. This puts us at $92,755 in contributions that I've forwarded to NFT, plus a total of $10,260 in matching gifts that should post the end of the 1st quarter...a grand total of $103,015! Please continue to pray that Shannon would get into complete remission in the next week or so, and that a suitable donor would be located soon. Thanks for the tremendous effort and support,

Stuart

 

News from Shannon - January 17, 2000
This weekend has been pretty busy. Friday night we had the Buds for Life get together in Buckhead and I had the opportunity to meet some really wonderful people. I've attached a photo of Robin Gelfenbien and myself. (Robin organized everything.) Her friends were awesome and it was nice to get out and mingle and feel somewhat "normal". Every morning I have to go to the hospital and get antibiotics and platelets. My friend, M.C. drove up from Albany for the weekend. While I slept all day Saturday, she cleaned my apartment for me - super! Then I started to crave crab legs, so we went to Red Lobster with her cousin and niece. Again, it felt so wonderful to participate in normal activities. The crab legs hit the spot along with those wonderful cheese biscuits and a glass of wine. Sunday, I was pretty light headed (starting to pass out when I stand up - resulting from low blood level) I'm just like a car that's low on oil when my blood level goes down - I need a quart or two to replenish my energy. Luckily, I'm having a blood transfusion on Monday which will help tremendously.

 

Sunday, I took it easy, my dad and stepmom and brother were here and we ate a bucket of chicken and watched football games. Tennessee Titans were great. Then Robin came by to visit before she had to fly back to San Francisco. She's so incredible. All of her friends signed a journal book for me and she cut out pictures of each of them so I'd have a face with each name. And she gave me a garden journal that I really look forward to filling up with notes about plants that I'd like to plant in my sunroom (can't play in the dirt quite yet). I'll give an update after my blood transfusion. Have a great week!

News from Shannon - January 25, 2000
It's been a busy week. I'm having a bone marrow drive at Intown Community Church in Atlanta on Sunday, February 6th from 1pm - 7pm. Please encourage anyone and everyone that you know in the Atlanta area to come out - they'll only draw one vial of blood for testing purposes. There is a $21 testing fee, but that fee is waived for minorities (ANYONE who's not Caucasian) because we desperately need diversity on the bone marrow registry to hopefully find me a match! STORM OF THE CENTURY! BLIZZARD OF 2000!! Oh, the media.... Things have been pretty busy lately and it's been almost ten days since my last update! Last week I produced a video for Sprint PCS. Our business sales team had to put something together to show how we were going to beat the competition in 2000, so we made a music video to Michael Jackson's "Beat It". It turned out great and I think we might have a chance at winning nationwide in our division!

 

Sprint PCS has great prizes and incentive specials for employees - it's awesome. We had our annual sales rally at the 755 Club at Turner Field where our top sales reps won big screen t.v.'s and Air Tran tickets! The photos from that night should turn out really well! I've been going to Dr. Lauer's every day and we're still waiting for my blood counts to come up. This is week three post-chemotherapy. I imagine if nothing happens this week, he'll do another bone marrow biopsy on Monday - but hopefully it won't come to that. I pray about my blood a LOT! God's got a plan for me, so I just ask to make it through each day, good or bad. My Dad and Teresa lost electricity this weekend and I didn't have cable, so we all went up to my Mom's house and watched the Tennessee Titans crawl all over the Jaguars (sorry grandma...) I want the Titans to win the Super Bowl this weekend!!! Dyson, McNair - those guys are awesome!

 

Contributions Update - January 28, 2000
Deposits sent to NFT now total $102,533 in direct deposits, plus $11,550 in pending matching grant funds! Please keep praying for Shannon to be cured from this disease; if she's not cured, we pray that she would go into complete remission and remain that way long enough to receive a "perfect" transplant. Please also pray for the upcoming bone marrow drive and for the right donor to be found.

Thanks,
Stuart

News from Shannon - Groundhog Day, 2000
My updates seem to be arriving farther and farther apart! We're getting everything ready for the Bone Marrow Drive this Sunday (actually my dad and my committee members are doing all the work!!) I emailed all of the Atlanta Sprint PCS employees and have received several responses, so we should be busy the entire day. Being tested only requires a simple blood test, but if you have any doubts about donating marrow, let me remind you that I've had several bone marrow biopsies (where the doctor goes in to extract marrow) and it's no big deal! Dr. Richard 'Painless' Lauer is his name. My white count is up to 1000 with about half of those being good, mature white cells. Platelets are so-so and my blood is going down a bit, so I'm sure I'll be having transfusions again soon.

 

Dr. Lauer is going to perform a bone marrow biopsy this coming Monday (2/7) and he gave me the order to schedule an appointment with Dr. Antin, the bone marrow transplant doc in Boston. So I guess I'm flying north next week to find out what's coming next. I was fortunate the past two weekends not to lose power (altough the cable did go out and we had to crash upon mom's house to watch football games...) and stayed bundled up in my apartment and out of the cold. The Super Bowl was rough - the Titans always seem to play well under pressure and we just needed one more yard....Oh well. Kurt Warner (and his wife, the only fan shown during the game) should be very happy.

 

I've been blessed to meet some really incredible people that I never would have met if I didn't have leukemia and that's just another reason why I don't mind having it. Shea (picture below) came out to the bone marrow party we had in Buckhead and it turns out he's been through a lot of the same things I'm going through now. It's been great to talk to someone who's "been there, done that". And because of him, I've started juicing vegetables and fruits (today I drank 6 carrots, half a pineapple and some strawberries!!) It really tastes great - well, the fruit tastes great, the veggies have to be chugged -there's so many vitamins and minerals that you can process quickly and naturally as opposed to taking supplements. O.K. that's the end of my nutritional speech. Oh, I also attached a picture of Shea's roommate, Chad - I have no idea what he was saying at the time (except maybe "Let's go now!) They were stuck in Florida for several days because of the weather and I don't think any of them slept very well. I'll try to give updates more often, and when I get up to Boston, I'm sure you'll be getting them daily...

 

Contributions Update - February 4, 2000
I sent the 11th deposit to NFT today totaling $2,476; in addition there were matching gifts of $450. This gives us a total sent to NFT to date of $105,009 in direct deposits, plus $12,000 in matching gifts that should be booked by the end of the 1st quarter!!

 

Bone Marrow Drive Recap
As many of you already know, the bone marrow drive yesterday was highly successful. A total of 420 new donors had their blood drawn in order to be placed on the National Marrow Donor Program registry!! Of that number 386 were Caucasians, and 34 were non-Caucasians. God's people really answered the call for this special event. From the donor information provided, we had tremendous participation from 9 churches and 2 synagogues, which accounted for 340 or 81% of the total donors. Special acknowledgement is given to the host church (Intown), not only for providing the facility but also for the way our members responded (251 donors or 60% of the total for the day!!); Perimeter Church added another 55 donors or 13% of the total. We also had enthusiastic donor support from many Bank of America and Sprint associates, as well as from the staff where I work, Perimeter Ministries. There were also many who came because they knew Shannon, Scott or another family member personally, and at least 2 came because they saw the newspaper announcement about the drive.

 

We had 65+ volunteers who helped make the donor drive run so smoothly. My heartfelt thanks to the eight Team Leaders who took on those leadership roles, and to all of the volunteers who worked some intense and, in some cases, very long hours. I also wanted to mention the special impact that Lisa Kabus had on the drive. I introduced Lisa to many of you via my last Contributions Update. She basically just joined our team when I met her by phone 10 days prior to the drive, and she served as one of our Team Leaders. In addition to getting at least 11 donors and several volunteers from her circle of friends and the area synagogues, it was also Lisa's contact with a CBS reporter at the Super Bowl that resulted in a TV crew being on-site for about half the drive. This allowed Shannon, Lisa and others to express, on camera, the importance of our drive as well as the urgent need for more people to

join the national registry. CBS aired two spots last night at 6:30 pm and 11 pm, and they presented the story well.

 

We were able to tape these, and might be able to use them later in some way to continue promoting the need for new bone marrow donors. Well, it's time to bid farewell, so long, or whatever it was those kids sang in the Sound of Music. Again, this was a tremendous effort, and it couldn't have happened without the dedicated commitment from many of you and your friends who helped. The next bone marrow drive is in 2 weeks, just kidding (but National Bone Marrow Drive is this Saturday... isn't it strange that there's no media promotion of this event?). Please continue to keep Shannon in your prayers, as well as Lisa's good friend, Barbara, a 41 year-old mother of two who lives in New York and was dianosed with leukemia about 3 weeks ago after having already survived an earlier bout with breast cancer.

In His love,
Stuart

Shannon's in Complete Remission
The prayers of so many have been answered. Shannon received the call today from her doctor's office about yesterday's bone marrow biopsy. She is now in complete remission!! Shannon will be going to Boston this Friday to meet with the transplant doctor for a consultation. The tentative schedule could have her back in Boston sometime next month to actually have the transplant. To receive the transplant, Shannon must remain in remission and a suitable and committed donor must be available at the right time. Please lift these two needs up in prayer. With the success of the Bone Marrow Drive this past Sunday (420 new donors to be added to the national registry) and this news, I'd classify this as an awesome week...and it's only Tuesday!! Our God is an awesome God!!

 

In His love,
Stuart

Great News from Shannon - February 8, 2000
God is wonderful isn't he? I just received a phone call from Tina at Dr. Lauer's office for the following news: "I AM 100% CANCER FREE!!" I'm at the office and all of my Sprint PCS buddies and I have been running around screaming - we've decided to celebrate with margueritas at Casa Grande! That means I am ready for a transplant ASAP. And speaking of transplants, we had 420 donors come out to the bone marrow drive on Sunday! It was a great success! And even more great news: Dana Farber Cancer Center called and they have found three slightly mis-matched donors for me! They only match 5 of 6 antigens, but they can still do the transplant. So I'd say God is working overtime for me this week! I'll try to send another update after we've all calmed down and I can think clearly. :)

 

Contributions Update and News - February 11, 2000
I sent the 12th deposit to NFT today in the amount of $8,483, plus an additional $125.00 in matching gifts. This gives us a total of $113,492 in direct deposits, plus $12,125 in matching gifts that should post by the end of the first quarter! Shannon and Scott arrived safely in Boston this afternoon and are meeting with the transplant doctor (Joseph Antin) as I write this. They'll be back in Atlanta tomorrow, and then Shannon plans to go to Kansas City on Sunday for a 2-day Sprint conference, returning on Wednesday. Have a great weekend.

Stuart

Following is Shannon's summary of her meeting with Dr. Joseph Antin on February 11, 2000 at the Dana Farber Cancer Center:

What I usually like to do is go over the what the disease is all about, the nature of Leukemia and you have a good deal of experience about it, I'm sure you understand it, but I want to make sure everyone is on the same page. And then we'll talk about how bone marrow transplantation fits into that, what we can reasonably expect from it, what the process is, why we do the things that we do, and what the projected risks and benefits to you are. It's pretty much of an ordeal, much more aggressive form of therapy than you've been through so far, as aggressive it may have seemed to you at the time. What's gone on with you is that for some reason that we don't really understand you've had a break in two chromosomes, 9 and 11. Ordinarily those chromosomes are separate and they are very fragile, long thin structures that break all the time and there are consequently very detailed mechanisms in the cell that fixed that. Most of the time it fixes it correctly. Because the DNA codes for a lot of things that aren't being used by a certain cell, say for instance you have a break in a bone marrow cell that's in a muscle protein. It may have no effect, some of the breaks aren't repaired correctly but they may not have an effect on you that you could notice. But if you have a break in a muscle gene on a bone marrow cell, nothing will happen because the bone marrow doesn't make muscle proteins, so you wouldn't notice it. What happened to you, these things broke and instead of getting fixed the way they were supposed to, they were fixed incorrectly. So, chromosome 9 turns into chromosome 11, and right at that place is something called the MLL gene which is involved in bone marrow health, proliferation, differentiation, it helps the cell turn into healthy cells, turn into what it's supposed to. Cells are produced in the bone marrow as primitive cells they don't have any function, so they're blasts. Everybody has blasts in their bone marrow that's normal. What typically happens to a cell in the bone marrow is that it acquires its function. And that function is to become a poly (white cell) to go out and eat bacteria, or red cells to carry oxygen or to become a platelet. So in the bone marrow there are two things going on; one is proliferation of cells, one is maturation of cells. What's happened with you is that your cells proliferate reasonably well, but they don't mature so they reach a certain stage of bone marrow development and they don't get any farther. So your counts drop. You have no polys (white cells), no red cells, and no platelets. And then the blast cells sort of get locked in and they can't do what their supposed to and they begin to behave badly and they can get out of your bone marrow and get into your blood, where they can get into other organs, your brain, skin, things of that nature -- a thing we call triple lightening in a cancer patient. Typically what people notice first about it is that they suppress the other bone marrow cells. Your counts are low, you have fevers and the bone pain that you had initially back last February was that these cells were putting pressure on the bones. Now most people and I think that includes is that you will have a mixture of normal bone marrow cells and leukemic cells and the leukemic cells have suppressed the normal cells. When those cells are suppressed, they're present but in low numbers. AS it turns out, fortunately, as resistant as leukemia appears to be, it is actually more fragile than normal cells. If it weren't you wouldn't be able to get anybody into remission. We give you a fairly modest dose of chemotherapy. You have cancer cells way up here and the normal cells are down here, you knock them both down and you've got no counts, and what remission means is that these cancer cells are down and the normal cells have recovered. It doesn't mean that you've recovered, it just means that the cancer cells are undetectable. And then you give a couple of consolidation cycles (of chemotherapy) and the normal cells are at one level and the hope is that the cancer cells are being knocked even further down, down, until they disappear. Obviously in your case they didn't. They went down to a certain point where they weren't relly detectable and during the time of your remission of six months or so they came back. Now, you're fortunate to get back into remission. Not everybody can, only about a third of people can get back into remission after a second round of chemotherapy. And the remission tends not to last very long so we have to move very quickly. Standard type of chemo will not cure this disease anymore. A portion of people who stay in long term remission with the original induction therapy followed by consolidation therapy will stay in remission upwards of 20-40% depending on what kind of chromosome abnormalities that they have. But that still means that they have a certain chance to relapse. We can do chemo again, but it doesn't accomplish anything but make you lose your hair and get mouth sores and infections but eventually the cells become resistant to it. The question is: what do you do about it? The answer is we have to administer a dose of chemotherapy that would otherwise be lethal to the bone marrow. Remember when you first started getting your therapy, it was a relatively modest dose and unpleasant as it may have seemed it was a dose that allows the normal cells to recover. Now our belief is, and what we know to be true is, that we can increase the intensity of that dose beyond a certain point, the normal blood cells won't recover. But if we do that and don't give you something to rescue you, then you would have no counts whatsoever and you would die. Our hope is that by going up on the dose response curve, by giving higher doses, we can irradicate the cancer and then give you someone else's bone marrow and you can think of that as a rescue or antidote. The process first destroys the bone marrow's ability to produce blood cells, then I'm going to give you someone else's marrow to protect you from this otherwise lethal dose of radiation. The side effects of transplantation and the limitations of it to a significant extent involve just that. What we've done is taken the dose of chemotherapy and the radiation up to the very limit of what most people can tolerate. You've got to remember that we're not only treating your bone marrow, we're treating your heart, lungs, kidneys, skin, intestinal tract, liver, and everything else. We're taking it up to the point where the side effects from it are significant but tolerable for most people but not everyone. And that allows us to really cure the maximum number of people that we can get away with the current strategy that we've had. The next part of the discussion is the side effects. Despite all of this, not everybody will stay in remission. Some people will still relapse. The relapse after this kind of transplantation is probably about 20% maybe a little higher than that. So you still have an opportunity to relapse, but we know that the relapse rate without the transplant is 100%. The trade off is obvious there. The issues are: can you get through the side effects of the treatment? Can you find a donor? Can you get through the immunologic side effects of the transplantation and survive long enough to hopefully be able to cure the cancer. Now there's effective benefits of the transplantation in that we're not only depending on the chemo and radiation to kill the cancer cells, it turns out that the immune system of the donor cells can attack and kill the cancer cells as well. We call that "graft vs. leukemia." The opposite side of the coin that is a transplant complication that is called "graft vs. host" disease which is a bad thing to happen. The "graft vs. leukemia" is a good thing so we have to try to develop a balance between them. First of all we have to find a donor for you, and your search was not the easiest to do. We cannot find a fully matched donor. We have found several one antigen mis-matched donors, so they're closely matched, but not fully. That does increase the risks of the transplant to a degree. There are several parts of the HLA typing that we look at. A - B C - D and some subgroups of those. The ones that we have available are A mis-matches, it's one out of the six. Which is okay. I generally prefer to do B mis-matches. And we have just in the last couple of days found a single antigen B mis-match in Europe. If we can get that one promptly, I might consider using that one. But otherwise we'll use one of these A mis-matches. When we look at the donors, we have to balance many things. We'd like a donor that's young, female donors we would like one that's never been pregnant, the mother gets exposed to a baby in the womb increases the risks of getting graft vs. host disease because of the maternal lymphocytes have been exposed to other people of different HLA types. What viruses they've been exposed to is important, to some degree what county they're in and what transplant center they're at is important. It speaks to how easy it is for us to get marrow. Some are extremely efficient and some are a pain in the rear end and it's difficult to get marrow from them. Sometimes that matters, and sometimes it doesn't. We have alternatives; we'll try and choose a donor for you based on a whole group of characteristics. That's not a trivial undertaking. Did Deborah come down and meet with you? She's been doing this for many years and she's really quite good at it. I work with her to try and pick out the donors that we're going to get promptly and that have the best characteristics other than the HLA typing and we work that in. If it turns out that the B mis-match donor is not the best one by virtue of being a woman that's 50 years old and had 7 kids we'll skip that one and go with an A mis-match if we can find one that's a young man. We have a decent donor for you, it's not the best donor, but we're not going to find a better donor. We've looked now through five million donors for you and I think that's the best we can do. We do these types of one antigen mis-matched donors quite regularly. The risks are somewhat higher, primarily graft vs. host disease. What are these things that we're looking at? They are molecules that live on the cell surface and they are important for communication between the body and the immune system. What happens if you get a viral infection like herpes, the immune cells or the body tissue cells take up the virus and they present it to the immune system in a way that they can recognize that's a function of HLA. What happens is your T cells (your immune cells) come along and bump into (say you have a herpe on your lip) and says "ah, ha, something that shouldn't be there." And the body has set it up so that it's in a form that is easy to recognize by the T cells. And those T cells that can kill herpes can grow and expand and attack those cells that have herpes and the herpes will go away. It's how the body keeps it under control. We live in a very contaminated environment. Think about it, your mouth is full of bacteria, your intestinal tract is mostly bacteria and you know if you drop a potato chip on the floor and eat it, you won't get sick even though it has bacteria on it. And the reason for that is the immune system is very effective at identifying things it doesn't recognize. Even if we have a fully matched brother or sister, it turns out that there are subtle little things that the immune system can recognize that can be identified. We take the bone marrow out of that donor and put it into the patient; sometimes there are those subtle things that can cause graft vs. host disease. If it's mild, it's not a big deal, we can treat it with prednisone and some other stuff, if it's severe it actually can be lethal in a small proportion of people, less than 20% can be life threatening and potentially fatal. The risk of that increases to some degree with a mis-matched donor because what happens is that the T cells can identify the HLA molecules that's different. They don't always. Some mis-matched unrelated donor transplants have no GVH. It's a little bit surprising and a little hard to figure out how that can happen. The problem is that it's unpredictable. You can go into this thing and come out on the other side, feeling great, and then you get sick. It's like a big ring on the carousel, you're reaching out to grab it and if you miss, you fall off the horse. The process is as follows: we need to do some blood test today. We will activate what we think is the best donor and as soon as we have that person available, we'll ask you to come up here; we put in two Hickman catheters, central lines, you have that. We like to have four ports for a transplant. You start off by coming into the hospital, and you are kept in a protective environment. People can visit you, you can have guests and things, but you can't leave this part of the hospital except for chest x-rays and stuff. The air supply and water supply is very well protected and it's very low bacteria with no fungal source. You'll take a disinfectant each day to bathe in and to try to disinfect your intestinal tract, we're trying to keep the bacteria on your body as low as possible because your counts are going to go down. And they're going to go down lower than they ever did with standard chemotherapy and stay down longer. This is a very vulnerable time for you as far as getting infections. We can't eliminate infections but by doing this we try and minimize the possibility of infections. We start doing that right away. The first drug that you get is called cytoxan. It's a chemotherapy drug. Have you gotten it before? (NO) It's very much like the other drugs that you've received. we typically give it in the evening around six or seven. It's given on Saturday and Sunday. Cytoxan has most of the side effects that you've had before such as hair loss, mouth sores, low counts, nausea, vomiting, diarrhea -- things of that nature. Typical of chemotherapy related side effects. In the dose that we give it for transplants though, it has a couple of unique side effects. The first is that it can burn the inside of the bladder. As it contacts the bladder wall it can burn it. In order to try to prevent that we give you a lot of fluids, we just run the fluids right in and you're up peeing for 24 hours -- we want to keep the urine as dilute as possible at this time. This reduces the risk to about 5% but occasionally people do get bladder burn. The other thing is that these very high doses can be lethal to the heart. And this is a completely idiosyncratic reaction. We've given this drug to people with heart problems who had no problem, and to marathon runners whose hearts just melted. It's uncommon. Many people have some slight reduction in heart function that will return to normal over the course of the next week or so. A smaller portion of people will get into serious problems that we can support them through and a very small number of people can actually die from heart failure. So that's the cytoxan. Then Monday starts the whole body radiation. It's given twice a day, Monday through Wednesday and then once on Thursday. And it's a pretty big dose of radiation. It's a dose designed to do the job that we intend it to do. It'll help you from rejecting the transplant and also to try and irradicate the cancer. It has the usual standard side effects like hair loss, nausea, vomiting. It's like getting a chest x-ray; you lie flat on a stretcher and there's a radiation device on the ceiling and the floor and it's radiates your top and bottom. You don't see, hear or feel anything like with a chest x-ray but the dose is much higher and it takes about twenty minutes. You just have to lie still for twenty minutes. Now three days before the marrow is infused, we start you on a drug called cyclosporin. This is for transplant rejection and graft vs. host disease prevention drug. It's given intravenously while you're in the hospital and it will be converted to orally on your recovery, as you're able to take pills and things of that nature. The plan is to get you off of it between six and twelve months after the transplant. It's a little different from a kidney or heart transplant where you have to take these drugs for life. With a successful transplant we can get you off all this medication within a year or two. It can have some kidney toxicity, it may cause hair to grow on your face, some people get a beard from it and as the dose gets lower the extra hair falls out, it can be disturbing. But you can do cosmetic things to take care of it. It depends on the person. So we start that three days before the graft. Then of course, we've arranged all of this with the donor center and they've collected the bone marrow somewhere else and it gets flown in on that day. It depends on where it's coming from. Our estimate of the shelf life is around 24 hours. But I've had marrow shipped from Hong Kong that was more than 30 hours and the guy did fine. If it's from the US it definitely gets to us in 24 hours. Sometimes we get some from Australia that might take longer. The European ones can get here pretty fast because it's only a five hour flight from Germany or England. We have a personal courier who actually goes to pick it up and hand carry it back. If something happened, we would activate the other close donors and try to get them promptly. So the marrow gets infused, it goes in intravenously just like a blood transfusion. If it's the same red blood cell type as you it would be about a liter of bone marrow and run in over three or four hours. If it's a different red blood cell type we have to concentrate it and take out the red cells which means it would run in about ten minutes. It's not very exciting. And then we get you another drug called methotrexate four times afterwards, which also protects against graft vs. host and graft rejection. The major problems during this thing are the time that follows the infusion of the marrow. I'm sure you've noticed with the chemotherapy that you've gotten you don't notice the effects until a week later. And so when the mouth sores start coming and your counts start getting low that's when you get into trouble. Your counts get extremely low, despite being in a protected environment, you do have a substantial risk of getting a serious infection. We give you antibiotics as necessary and even with that occasionally people have uncontrollable infections. The more

serious aspect though is if the heart or the kidneys, liver, lungs, intestinal tract couldn't tolerate the radiation, they can fail. They can fail in a spectrum of severity. If it's a little bit, it typically will heal itself and get better and you don't have to worry about it and it'll go away in a week or two. But on the other hand, some people do get complete organ shut down from the treatment that's not reversible and not treatable. The risk of that overall when you think about graft rejection and graft vs. host disease, organ toxicity and infections and things like that is about 20% or 1 in 5 that something terrible like that might happen to you. But that's an 80% chance that you'll get through that part fine, the trade off is still pretty good but you need to know the dangers. So if everything works out okay and you don't have that problem and your counts start to recover in usually about three to four weeks you can reject the transplant, the risk of rejection is about 5%. It's not high. And not like kidney or liver transplants where rejection is the main concern. If that's the case, we'll go back to the donor and ask to provide another donation. I've only known one that refused. If you have a rejection, it's a major deal for you because it'll take several more weeks for the counts to come back and that puts you at a much higher risk for infection. A much more serious problem is graft vs. host disease. As your blood counts start to recover at 18-25 days out, you start to feel better, you start to get excited about it, you're feeling more personable and then you get a rash, some diarrhea or liver problem. These T cells start to come up at about the same time that your white blood count does, so just as you start to feel like your graft is going pretty well, we tend to treat it with prednisone and most of the time it's pretty successful. You can have no GVH, you can have a little GVH -- no big deal, you can

have an intermediate grade of GVH which is usually treatable although it can cause you some problems; you can have very severe GVH which is quite deadly. This can occur in the first month or two after the transplant. We typically don't see it after day 40 to 60. It usually happens around day 20-30. With mis-matched transplants it tends to come on a little earlier. If that works out okay and you get some or you don't get any we get you out of the hospital. You need to take a lot of antibiotics and infusions and things of that nature when you go home. You're taking prophylactic antibiotics to prevent infections. It's a little different than when your counts come back after standard chemotherapy your immune system recovers pretty well too. After transplant your immune system won't come back for a very long time. Your counts can be pretty normal, but your immune system is very primitive. In contrast to what you do now, you wouldn't be able to go to work; you'd have to do it over the phone or by computer. We can't have you going to public places where someone might give you the flu or something infectious. You don't have an immune system to recover from it. We use these antibiotics in a preventive way to try and prevent a serious infection while the immune system is recovering. It's like having a really bad case of AIDS. And that's what people with AIDS usually die from. But, the positive side is that with AIDS the immune system is getting worse and worse, yours starts in the pits and then gets better and better, but as the transplant takes and matures in your body over the course of about a year or two years the immune system will get up to a much more normal level to the point where you can function normally and it will protect so you can do what you want. During that year it's pretty boring. We do need to limit you to situations where you're not in contact with other people; you can't go to other people's houses, can't go to parties, movies, restaurants, the mall, etc. We just can't risk that somebody will have a cold. They have a cold and it goes away, but if you get a cold it causes problems. So in a very successful transplant one of the real frustrations is that you can't do anything, you may feel fine like you do today, but you can't go out to even buy a newspaper because you have to stay out of public places. It actually takes longer than that for your immune system to come back, but we give you a break at a year. People have a hard time tolerating it. And we think that by a year, in most people, the immune system has come back enough. Around a year we start vaccinating you again because you won't be immune to diphtheria, whooping cough, tetanus. All these childhood things that you were vaccinated against. You're starting from scratch. That's a measure of how bad the immune system is. We have to keep the visitors to a minimum. We'll identify a core group of people who can go in and out of the house. We don't want some friend who has a couple of kids. The problem with viruses is that they are very smart. It starts to excrete itself a couple of days before symptoms show up and then it's too late. We're just trying to keep the numbers to a minimum; it's purely a statistical issue. The fewer people you're in contact with the less likely that you are to come up with something. Now, we can have friends over if you're outside, but if you're in a room you have circulated air and that's risky. You can go walk in the park without mask and gloves because the air tends to blow everything around. Generally we ask people to wear mask and gloves in the house. It is very difficult to do this and live alone, it can be done, but you'll be lonely. You need

someone to do your shopping for you. It's just easier if you're living with somebody. For some families it's difficult. The frustrating thing is the loss of independence on your part. We expect that you have a family. Most of the people we transplant that are your age or so have children. We know the kids are going to be bringing things in from outside, but we have techniques to protect you and try to avoid colds. We expect that you will have a group of people that you will have routine exposure to. People still get sick regardless of how careful you are. The difference is eliminating the stuff that could really be bad. So, that's it in a nutshell. Does that answer your questions?

 

Shannon: What's the difference between A and B antigens?

Antin: It's negligible.

 

Shannon: How long will we know before I get admitted?

Antin: Depends on the donor, you'll probably come in the day or two before.

 

Shannon: Timeframes: the critical stage is in the hospital?

Antin: Average is 32 days. Then you should stay here for awhile in Boston. The more critical period is the first three months. If things are good, we're tapering doses of cyclosporin, we'll get you down to Atlanta.

 

Shannon: Visitors in the hospital:?

Antin: At any time. Just have to be very careful.

 

Shannon: Can I have a treadmill or have physical therapy?

Antin: That's a good point. You can take some control of your life. We've got stationery bikes. We've also filtered the air in the hall, so you can go out in the hall and walk. The other thing is eating. You're going to lose your appetite. The intestinal tract is a muscle and to the extent that you can eat will help hugely in your recovery.

 

Shannon: I started juicing vegetables. When can I start that again?

Antin: No raw vegetables and fruits. Fresh veggies like carrots we generally eliminate that for 2-3 months. Thick-skinned fruits are okay. If you're craving food during this thing, we'll bring it to you. Mouth sores are going to be a problem.

 

Shannon: What do you think about my wisdom teeth?

Antin: If they bothered you, take them out. Our dentist prefers to have them taken out if possible.

 

Shannon: You mentioned that I would have two Hickman lines? How long do they stay in?

Antin: Usually while you're in the hospital, then we'll take one out and use your port.

 

Shannon: What about showers?

Antin: No showers.

 

Shannon: Can I get my nails done?

Antin: No, the chemicals might cause problems.

News from Shannon - February 13, 2000
Once again, I'm online and accessing the internet via my SPRINT PCS phone. It is just so cool to be able to do this! I'm in the Kansas City airport looking out at some really heavy fog and wondering how in the world pilots (like Shea) can land without slamming into the ground. I love to fly though, to me it's like a ride at Six Flags only ten times better. I had to take an early flight so I thought I'd wait around for some of my crew to arrive before heading to the hotel. I love travelling. My trip to Boston to visit with Dr. Antin (bone marrow transplant doctor) went pretty well. He told me a few things that I didn't expect, and were troubling, but I'm trying not to worry about it. They found another possible donor that closely, but not perfectly, matches 5 out of my 6 blood antigens. This donor is from Europe and he's hoping to use this person if at all possible. I like Dr. Antin, he's direct and I feel confident about trusting him to take care of me. While we were there, he performed another bone marrow biopsy - my hips should be smaller from all of these extractions!!! My platelet count is still on the rise, up to 30,000, which assures me that my body is producing good cells. Maybe I'll be able to find out the results of that biopsy on Monday. To sum up the whole bone marrow procedure is still a lengthy process so I'll wait until I have time to transcribe our meeting - I taped it so I could go back and concentrate on what Dr. Antin said - I suffer from short-term memory loss, so I figured it would be a good idea. Oh, on that note - the upcoming procedure causes temporary AMNESIA!!! Please forgive me if I forget who you are even if you are someone I love!!! I'm smiling at this because I really have a terrible memory anyway. I'll be schmoozing with the big dogs of Sprint for a few days, something I love to do, and trying to learn more about what's coming in the way of technology and how our phones can be better utilized in a business setting. By the way, THEY (I always wonder...who are THEY?) are coming out with the ability to use our phones to access the internet without even using a cable to connect the phone to my laptop. Now how great is THAT? Ah, I love being on the cutting edge of technology - I want to be there FIRST!!! Hope you all have a great week and I'll update the site soon regarding the bone marrow procedure and what you can expect from me during the next year of my life. Keyword: LIFE!

 

Contributions Update and News - February 14, 2000
We have met our fundraising goal! As of today, once the matching corporate contributions come in, we will be slightly above $120,000. The tremendous support we have received from the members of our community and from around the country has been overwhelming. There is no way that we can begin to express our heartfelt thanks.

 

News from Shannon - February 15, 2000
I'm on the plane on the way home from Kansas City. What a wild weekend. Scott and I flew up to Boston to visit with Dr. Antin at Dana Farber, returned to Atlanta on Saturday night and then I flew out to Kansas City EARLY Sunday morning (i just barely made the flight..) We had our annual Business Sales Summit for Sprint PCS where awards were given to top sales people from 1999; we attended sessions to learn about selling techniques, and we were entertained by some of the top management for the company. You can only imagine what it's like to attend a conference with a thousand PCS salespeople, managers and execs - all carrying PCS phones. We seemed to overload the system and had a hard time making calls because there were so many people making them at once! And this was only the business division. I can picture what it'll be like in October for the company wide summit. What was the BEST part of the summit? Seeing the SPRINT PCS GUY in person!!! Yes, the Sprint Guy from the television and radio commercials was there (I just love that guy!), and I believe everyone else thought he was the best part as well. We went out to Have A Nice Day Cafe (yes, just like Atlanta but with no customers). It became Sprint PCS night and we danced like fools and had a great time. I have to go through some extensive testing during the next couple of days to find out everything about my health so they'll have a record of what I was like before my bone marrow transplant. I'm thinking I'm going to become a totally "new" person the way they keep talking.

 

Shannon L. Mosher
Sprint PCS
Direct Sales - Atlanta

 

News from Shannon - February 17, 2000
Turns out I only had a blood test today. White count 4500 (NORMAL!); platelets 50,000 (Low, but on the rise) and hemaglobin 10.5 (NORMAL). Thursday I'll be having an echocardiogram, an EKG, a pulmonary function test some chest x-rays and a tuberculosis test. Then on Friday I'm having my teeth cleaned - side note here: anyone who know me is familiar with my obsession with my teeth. they haven't been cleaned for quite some time and I am REALLY looking forward to this!!! - AND THEN after I have my teeth cleaned, an oral surgeon is going to pull some of them out. Yes, I'm 28 and I'm having my wisdom teeth taken out. I had problems with my jaw tightening up during my last two rounds of chemo, so we're going to eliminate the source of that problem. I told Dad tonight that I am more afraid of having my teeth pulled than having the bone marrow transplant!! At least I'll be asleep. Anyone interested in bringing me some treats this weekend from PLANET SMOOTHIE? I'm going to post the information I gathered during my consultation with Dr. Antin on the website so I don't have to re-tell the story. It's pretty detailed and will likely answer most questions about the procedure and life after. Have a GREAT weekend!

 

Contributions Update and News - February 26, 2000
I sent the 14th deposit to NFT yesterday in the amount of $701.00. This brings our total of direct deposits to $115,270; in addition, we have $12,155 in matching gifts that should be credited by the end of March. Thanks again for all the effort that made our fundraising campaign a huge success. Please pray for Shannon as she takes some time off to relax a few days before getting ready to go to Boston for her bone marrow transplant. Pray also that we would be able to find a suitable and well located (i.e. walking distance preferred!) apartment near the hospital for the 4 months or so that we'll be there.

 

In His love,
Stuart

News from Shannon - February 28, 2000
I've been preparing my apartment for my departure and eventual arrival a few months from now like a bird making a nest! Vents cleaned, having the entire place sanitized, went shopping with grandma for more furniture (she's the BEST!) I've been turning my porch/patio into a breakfast room/workout room with a cute bistro table and i'm getting a treadmill tomorrow. I WILL be determined enough when i get home to start walking and building up some strength again. If I have to spend a year in my apartment, you better believe I'm going to have it set up so I'll really enjoy it! I'm flying to Boston and back on March 7th for another day of testing and meeting with Dr. Antin and to have a Radiation Consultation. I can imagine that now... "Ms. Mosher, this egg is your body. This is your body after lethal doses of radiation that we'll be giving you." - (Egg fries to a crisp) End of consultation. Then I fly up there on Thursday, March 9th so I can be at the hospital first thing Friday morning to get a Hickman catheter put in (maybe two of them, I don't know if they'll be using my port) Wow, here it comes. I wish I were going this Friday so we could just get on with it - the waiting time is about to kill me. Grandma came up from Jacksonville this weekend so we could visit and so she could meet my brother's girlfriend, Christy, and Shea. We all went out to eat and had a great time. Of course, we ALWAYS have a great time when my family gets together. I've attached a photo from the Bone Marrow Drive of me, Shea and my friend, Jill Pruitt. At the time of the photo, we were all completely exhausted and were checking out the male donors as potential future husbands for Jill! (sorry Jill!) We were pretty tired, but had a great time. We still have donations coming in and I must say that I am one blessed woman to have so many people looking out for me. Thank you Lord!

 

Contributions Update and News - March 3, 2000
I sent the 15th deposit to NFT today in the amount of $380. This brings our total of direct deposits to $115,650, plus matching gifts that should be credited by the end of this month of $12,180. These updates in the future will probably be every couple weeks or so. Teresa and I will be driving to Boston, heading out this Sunday. We went up via Delta early this past Wednesday and secured a 2 BR apartment within about 3 blocks of the hospital...another answered prayer! Came back late that night and have been getting things packed up and ready to go. We hate to have to leave our dog (Braxton) for such a long time, but he'll have some good company with Teresa's sister and family (including an 11 year-old daughter (Rachel) who will provide mucho love to Braxton in our absence). Fortunately, we have a housesitter to look after the house and yard while we're away for awhile and some great neighbors. Please pray that everyone will have safe journeys over the next week or so. Shannon's going up and back to Boston on Tuesday next week and then will head up again on Thursday for the beginning of what will probably be a 4 month stay; Susan and Scott will be driving up next weekend. Also, please continue to pray for Shannon as she begins this critical phase of her treatment, leading up to the actual transplant and post-transplant recovery period. We'll stay in touch.

In His love,
Stuart

 

Special Note from Stuart and Teresa - March 4, 2000
Our address in Boston as of March 8th will be: 390 Riverway, Apt. #6, Boston, MA 02115. We'll have email capability and will keep everyone updated from time to time.

 

News from Shannon - March 6, 2000
This is probably my last web update before going to Boston . I'm selling my Mazda if you or someone you know might be interested. The basics: '92 Protege; 106,000 miles; A/C; 5-speed; AM/FM/CD; great "first" car and extremely reliable. $3,000 bucks. You can send me an email directly from the website if you need more info. Obviously I won't be needing a vehicle for the next year so. I took the past week off from work preparing last minute details. It's pretty hard to "get your house in order" when you know you'll be gone for such an extended period of time. I had my treadmill delivered today, just barely fits on my patio (recently renovated to be a breakfast room/workout room) and even had to take the hinges off the doors to get it inside. The view outside is nice while I'm walking, lots of trees, birds singing, good breeze. I've also had some furniture delivered so that I have as much as possible ready for my return. I was thinking that my isolation period will be similar to that couple that decided to stay in their home for a year and only have internet contact. They did it for fun? Scott's dropping me off at the Marta station at 6 a.m. ANYBODY who knows me is laughing at that right now. I am NOT a morning person. I get back at 9 pm. long day. My big questions for Dr. Antin? Will Charmin be available and can I wear socks? You know, the really important stuff. I have a few goals to accomplish this year. 1. Survive 2. Learn to speak spanish 3. Start on my MBA (online of course) 4. Write a book. We'll see how well I do by this time in 2001.

 

News from Shannon - March 9, 2000
I'm en route to Boston via a 727 with clear skies and a great view of the east coast cities. I'm listening to a new CD and looking out at a beautiful moon, a perfect night. I've been really blessed to have had two weeks of excellent weather in Atlanta prior to leaving. I'm so glad this thing is finally underway! The waiting has been about to kill me mentally. I was already forgetful, but you wouldn't have wanted to be around me during the past week - scary! I said good bye to Shea at the gate and thought of all the reasons why having leukemia has been a great experience for me. My family has become even closer than ever before, my faith has grown stronger, I've been able to affect people around me (and didn't even know it until they told me) in a positive way, I've met someone incredibly special that otherwise I wouldn't have, and I have a great perspective on life and what's important and what really isn't. I learned today that I'll be actually receiving my bone marrow transplant on St. Patrick's day. My chemo will start on Sunday night now instead of Saturday, have radiation Tuesday - Friday and get the transplant right after the last radiation treatment. Luckily, I can take my discman with me when i'm having my radiation treatments, so i can relax to my favorite CD's and not think about being fried from the inside out!!! By the way, my hair is REALLY growing fast these days and I just hope that it'll have the same strength when it starts to come back again in a few months. (nurses say it takes about three months after the last radiation treatment for it to start coming back). I am truly fortunate to have such a round head. I've had a lot of compliments on the shape of my head and the fact that i look pretty good without hair. That's encouraging when you're a bald woman! I've been using the same bottle of shampoo for more than six months!! It has some benefits you know. I'm having another port put in tomorrow morning at 7am (i kind of like getting those twilight drugs before my surgeries - they make you feel GOOOOOOD!) and then I can go to the apartment for the rest of the day. Saturday I'll go into the clinic to have the dressing changed and get it flushed (that always gives me a head rush. you know, it's no surprise that i've lost some mental capacity with everything that gets shot into my veins...) and then i can go home to the apartment again. then i'll check into Brigham and Women's on Sunday morning. I'll send an update once i get situated.

 

Contributions Update - March 14, 2000
I sent the 16th deposit to NFT today in the amount of $250, which included one matching gift of $25. This gives us a total of $115,900 in direct deposits, plus $12,205 in matching gifts that should post by the end of this month.

I'll send some highlights of our trip and life in Boston in a separate email.

In His love,
Stuart

 

News from Stuart - March 15, 2000
Below is a 'comprehensive' update of the past few days, intermingled with some level of humility and humor as we get settled into our new surroundings...we do miss our dog, Braxton! We'll keep future updates considerably shorter: TRIP and ARRIVAL: Teresa and I arrived safely in Boston last Tuesday, after spending Sunday night in Raleigh, NC with my brother and his wife, and then stopping in New Jersey Monday night. Our old '93 Buick Regal was groaning, begging us to stop after the first few thousand of what would eventually be many "giga" thousands of potholes and ruts during the last few hundred miles leading into Boston. But believe me when I say that Boston will not be outdone on the potholes and ruts,they win hands down! A major highlight of the trip was an answer to prayer: our 18 cu. ft. car top carrier stayed connected to the car the entire trip (thanks, Scott)!

 

When we got into Boston Tuesday afternoon, the plan was to locate our real estate agent and find out where the keys would be the next day when the rental furniture was to be delivered to our 2 BR unfurnished apartment. We were pretty tired and really wanted to find a nearby motel room where we could crash for the night. The landlord, who lives in an adjacent building, was supposed to be gone out of town for a few days but I decided to knock on her door to check. Not only was she there and gave us the keys to our apartment, we were stunned when she invited us to stay in her apartment for the night...she was going to church later with a friend and would just spend the night with her. It seems that she had lost two close relatives to cancer and, knowing from the agent that we were coming to Boston for Shannon's transplant, she wanted to do anything she could to help us out. She showed us around her apartment and told us to drop by in a couple of hours to get her keys!

 

We decided to go ahead and unload the car while it was daylight, but while rolling the very first suitcase up the entrance stairs, Teresa twisted around and pulled a back muscle and was down for the count for about 2 days. Well, I was a pretty tired after unloading everything. But that's not my excuse for tripping the next night on the last step and doing a "hit and roll" on the sidewalk... my hand didn't bleed too much and is healing up nicely, but I was a little sore for a few days. When we told Shannon about our entrance into Boston, she called us the Griswalds! PARKING: It is the biggest challenge one faces in Boston if a designated, assigned space isn't part of your rental package. Having understood from our agent the previous week that only street parking was permitted at the apartments, we felt comfortable about just planting our car in a spot and not going too many places or too often (the hospital is only a 7-8 minute walk from the apartment). But our landlord enlightened us that first night by explaining that there is street parking, just not on the street fronting the apartments. For that we'd need a special residential permit (or pay a $20 fine when ticketed).

 

The next day after talking with and/or being transferred to 7 different city departments (I called the mayor's office about halfway through the maze), it was finally clear that there were no special provisions for short term residents such as us visiting for medical reasons. The answer to the problem was for us to get proof of local insurance and transfer our car registration to Boston...sure. Parking on other streets in the area was permitted if we could find a space (except on certain nights between midnight and 7 am when they sweep the streets or apparently when it snows a lot and they have the snow shoveling equipment out in certain areas). She did mention a garage not too far away that provides parking for $50/month between the hours of 4 pm and 9 am; have to remove your car by 9 am and find alternative parking during the day (which gets you back into the earlier cycle. I have no idea where people who park in this garage go on a heavy snow day and/or when there are no spaces available on the streets). After meeting so many people during my phone marathon with the City of Atlant, uh, Boston, I called the hospital social worker who met Shannon the previous week and explained our dilemma. Praise the Lord, she actually was able to get us a temporary parking pass for a garage across the street from the hospital. It's only good for part of the time we'll be here, but as Scarlett said just before intermission in "Gone With The Wind," "I'll worry about that tomorrow!" Tuesday night we left the car on the street and didn't get a ticket; we parked the car in the garage Wednesday night, but since Shannon was to arrive late Thursday and had to be at the hospital by 7 am Friday morning (with heavy rain in the forecast) and because I wanted to get the full Boston experience I left the car on the street outside the apartment Thursday night and had my first $20 ticket bright and early Friday morning! It was worth it.

 

CAR: The old Buick held out great getting us to Boston, it wasn't until Friday that the "check gauges" light came on and the oil needle dropped sharply. But after the beating it had taken on the roads (and the load it was carrying), it was not a complete surprise. If one wanted to make their fortune and retire early, having an automotive repair shop in the area would be a great way to get started. The good news was that a garage was just 97 steps from our apartment, so I didn't have to tie up the complimentary shuttle service available from the closest Buick dealer. I did call the dealer's service department to get their input on the garage mechanic's 'verdict' after he tried the $120 approach, which involved putting in a new sending unit, flushing the engine, etc. etc. (I know less about cars than I do about brain surgery), which didn't correct the problem. Seems that having to replace the oil pump on a car with about 134,000 miles on it was not totally unreasonable, and the dealer said their labor rates were much higher than that of a small garage mechanic. So after an additional $473 worth of work the mechanic called and said the car was ready. After picking it up yesterday, it only stalled out 5 times in about a 10 mile drive back and forth to the Post Office and K-Mart, guess we'll see about getting some necessary adjustments made. When we get ready to make the 1,140 mile return trip to Atlanta, I don't want it stalling out 570 times on the way! (Sidebar: When I called the dealer, I mentioned to the receptionist (who had only been there 1 month) why we were in Boston and she immediately gave me her father's home phone number and told me to contact him. Not only is he a pastor of a Baptist church here, but he's also an on-call chaplain at Shannon's hospital. Providence?)

 

SUSAN and SCOTT: They arrived in Boston early Sunday evening. Well, actually, it was probably late afternoon but it took a few trips around an area called Chinatown and back-and-forth on Interstate 90 to finally navigate to the apartment. Praise the Lord we all have Sprint PCS phones (thank you Shannon!); just imagine what it would be like talking a disabled plane in thick fog into a final approach and landing pattern and you get the picture about what it's like driving around Boston as a newcomer. Well, after getting their rental car unloaded (no way Susan was driving her new car up here after hearing about the parking and the roads. Smart!), Scott and I went grocery shopping. Susan didn't get sick and have to go to the emergency room at Shannon's hospital until about mid-day Monday. Actually, she thought strep throat might be the problem. Fortunately, after waiting around for 4-5 hours they said it wasn't strep, but she pressed them for some antibiotics anyway as a precaution and sort of for all the time she spent waiting for the answer!

 

DUTIES: As we get settled into some semblance of daily living in our temporary quarters, the duties have been assigned as follows: Susan - cooking; Teresa - toilets; Scott - vacuuming; Stuart - car maintenance (that's sure to change soon). SHANNON: Save the best for last! After having the catheter surgery Friday, Shannon was delayed getting admitted until about noon on Sunday because of the scheduled arrival of the bone marrow from Europe this Friday (timing is critical). Later in the day, the doctors observed a slight fever and virus, and told Shannon that depending on what kind it was they may have to postpone the transplant and send her home for 3 weeks. This news created some obvious high anxiety and frustration for Shannon and she had a mostly sleepless night. They did agree to go ahead and administer the first heavy dose of chemo that night, rationalizing that she would either remain on schedule pending the results of the tests or would have 3 weeks to get her counts back up if she had to go home.

 

Praise the Lord, there was good news on Monday. Shannon's problem was sinusitis, so she has remained on schedule. After 2 days of chemo, she began getting whole body radiation treatments twice a day yesterday and will continue through Friday at which time she should actually receive the bone marrow transplant. Please continue to pray that her body will tolerate these treatments, that there would be no major damage done to her vital organs, and that the transplant would be highly successful. We just visited her in between today's radiation treatments and she seemed to be handling everything quite well, even though her skin felt really hot last night and some bones were aching.

 

If you would like to send her a letter or card, just direct it to the apartment address and we'll get it to her: 390 Riverway, Apartment #6, Boston, MA 02115. After about 30 days, Shannon is scheduled to leave the hospital and stay at the apartment, going in for check-ups as needed. She is also 'online' and will continue to update her website from time to time. We have 2 local phone lines in addition to our Sprint phones and use them for internet access as well: (617) 566-0064 and 566-0584. Please continue to hold Shannon and the rest of us up in prayer as we move forward in the transplant and post-transplant process.

In His love,
Stuart

 

News from Shannon - March 15, 2000
I hadn't been able to get online until today, so I'm a little behind on my updates. Sunday I checked into the Bone Marrow Transplant unit and got situated in my room. They are specially filtered (called Laminar Air Flow) to keep all dust out. Everything I brought had to be wiped down with disinfectant before it could be put in the room. Once I came into my room I can't leave it without wearing mask and gloves. And the only places I can go are down to radiology and x-ray. I can walk around the ward for a few minutes after I've bathed, but then I have to get hooked back up to my i.v. fluids. The room's not bad, big window with blinds that I can control from the bed and the privacy curtain facing the nurses station can be operated from the bed as well. My television doesn't work (no sound) but I really don't mind. There's only a few things that I watch anyway, so they brought me a portable one. No bathroom, only a bucket. Niiiice. I've got my laptop, CD player and phone and that's really all I need. I had sinus congestion when I checked in on Sunday and the doctor told me it could cause a delay in the transplant! I was so upset I couldn't think straight. They performed some tests on my mucus (lovely) and decided to go ahead with the first round of chemo in case the tests came back negative. If they came back positive for some kind of virus, we'd delay the transplant and I'd have to wait until my blood counts recuperrated from the chemo that I got Sunday night. It was not a very pleasant twenty-four hours. The first round of chemo on Sunday night went smoothly and the only bother was having to get up to go to the restroom every two hours. They really keep fluids running through you so the chemo doesn't burn your insides. Monday morning the sinus test came back negative (thank you Jesus!) so we were ready to proceed as normal. I spent most of Monday sleeping to make up for no sleep during the night. My Dad and Teresa came by for a few minutes, but I was pretty tired so they didn't stay long. Monday night I felt a little squeamish so I took some anti-nausea medication. It seemed to work well. Slept off and on Monday night. During the early hours of Tuesday morning, I had to start getting an I.V. called Cyclosporin. That's one of the immune suppressors. When you get it, your hands and feet and throat heat up like you're in front of a fire. Interesting feeling. I cranked the air down to 60 degrees just to get some rest! I'll get cyclosporine everyday.

Tuesday morning I took several medications and after a while my stomach really started to feel questionable. I only ate a small amount of pound cake Monday evening, so my stomach was empty. I started radiation Tuesday morning. I'll have it at 9am and 3pm Tuesday - Friday. Basically, I have to mummify myself with mask, gloves and blankets and get wheeled down to radiology. By the way, they've got a GREAT stereo system in there, so I take my CD's with me and Mary Ann (my radiologist) and I chill out to some great music. I just have to lie flat on a raised table that has radiation panels underneath and above it. Oh, I also had some lead plates made in the shape of my lungs to help reduce the amount of radiation that gets to them. They are COLD when Mary Ann sticks them on! Other than that, it's like laying in a tanning bed for about twenty minutes. You don't feel anything. However, Tuesday evening I started to feel all sorts of things. My stomach was very queasy so I started taking dramamine. Mom and Scott came by to visit for a little while. I could talk in spurts, but it really is exhausting. Scott enjoys using the Boston mass transit system. Had a couple of guys talking about a drive by shooting. I got pretty tired and didn't feel like eating any dinner. I also noticed that all of my bones were aching. Similar to the aching that comes when your blood counts start to return to normal. Nori (my primary nurse) gave me some Adavan to help me sleep. I did sleep well but when the doctor woke me up this morning for my exam, I puked. Good morning to you! I went down to radiation with my new Dixie Chicks CD (another one burned by Tammy) and we really had a good time playing it LOUD! When I got back to my room, I ate few bites of french toast and had some hot chocolate. I can tell I won't be eating much for the rest of the week. Once you throw up, the eating kind of tapers off. However, the nurses encourage all requests for drugs and pain medications. "We've got 'em, you might as well use 'em!" I might go for a cocktail later today depending on how the next dose of radiation goes.

Shannon

 

The Transplant has happened. All went well. 3/18/2000

News from Stuart Mosher:
Well, it's 2:40 a.m. on March 18th and our group of five (Scott, Christy, Susan, Teresa and me) just returned to the apartment from Brigham and Women's hospital. We all had the joyful pleasure of watching Shannon receive her long awaited bone marrow transplant. The 175 ml of bone marrow was delivered by courier who had flown to somewhere in Europe (we believe) to retrieve it yesterday. Shannon was in great spirits and looked radiant, and not just because she had whole body radiation treatment the past four days, but from just knowing this day had arrived and she was getting closer to being healed from the leukemia that has plagued her body since 2/11/99.

 

As the nurse hooked up the bag of bone marrow, Shannon was talking with Shea on her Sprint phone which also lifted her spirits. Shea had just flown in late Wednesday night to visit her, and we all had lunch with him yesterday before he got on a late flight back to Atlanta. Shannon received the marrow from an I.V. and it only took a few minutes to complete the infusion. Praise the Lord, she had no immediate negative reaction from it. We are truly blessed to have reached this point in Shannon's treatment, and to have had so many family members, friends and even people we do not personally know who have not only provided financial and emotional support to help get us to this point but also have lifted us up in prayer regularly as we've gone through a rather hectic 15 months. We are all very grateful and wish the best for you and your families.

In His precious love,
Stuart

 

News from Shannon - March 18, 2000
TRANSPLANT DAY! Yesterday, St. Patrick's Day, I had my bone marrow transplant. Everyone has worked so hard to reach this day and I want to thank all of you who have put in your personal time, effort and comittment to help me get my bone marrow transplant. It seems like a long time ago when I called my friends and family to ask for their support in getting me to this point. Now it's done. The transplant was a simple transfusion that took about fifteen minutes to complete. My Dad, stepmom, mom, brother and his girlfriend all came up the hospital at 1:30 in the morning to witness it (I also called Shea on the phone so he could "be here"). Dad kept the bag that the marrow came in for a souvenir.

 

Everyday from this point forward will be counted from Day 0 (from transplant). I'll have another chemotherapy drug called Methotrexate on day 1,3,6 and 11. It's a low dose to help keep my immune system down to nothing and prevent my body from fighting the donated marrow. It'll take about three weeks for my blood counts to come back up to normal levels so during this time my main goal is to remain FEVER FREE. Because my body is so immune suppressed, I won't be able to fight off infections or bacteria. That is what makes the next few weeks critical. I'll also be experiencing the side effects from the chemo during this time: mouth sores, fatigue, bone aches and things of that nature. Once my blood counts start to come up to normal levels, we have to watch for Graft vs. Host disease. Everyone gets it. Hopefully mine will be minimal. If it's severe, GvHD can be fatal. I'm excited about this whole procedure and keep looking forward to the day that I will fly back to Atlanta where I can really begin getting my life back to normal. I can't wait!!!

Shannon

 

News from Shannon - March 21, 2000
The past few days have been spent SLEEPING and that's about it. My body needs the rest and it can heal better and hopefully faster. I've had a low grade fever for a couple of days, the doctors have done some blood cultures to find out why but have no answer. That means I'll have the most powerful antibiotic ever made, called Anphoteracin, to knock it out. I had that last year for fevers and it's supposed to be pretty terrible giving me chills, tremors and other nasty side effects. Fortunately for me, my side effects were just a few chill spells. My throat is sloughing away. the radiation causes your esophagus to shed like a snake skin. Nasty sounding, huh? well, it is irritating and makes eating and drinking pretty difficult. Hopefully that will be completed by the end of this week. In about 7 days, we'll be looking for the Graft vs. Host disease to kick in. The only way to treat it is by adjusting my immune suppressing drugs. Please pray for minor GvHD. It can be severe and/or fatal. I haven't been eating very much, but when you just lay around, you don't get very hungry. I have been having computer calamities and can't get online properly. Hopefully i can get that resolved today with some help from our IT support. Just didn't want anyone to think i was too out of it to respond to emails - I've just been unable to! Well, today marks Day 3 (Transplant Day is Day 0) and I'm counting them until I get to go home. Hopefully within about 3 weeks or so. Hope you're all enjoying SPRING!! I can't WAIT to get back to Atlanta to see all of the flowers blooming and enjoy the beautiful weather. I love that town and may finally get to enjoy it since moving back in November of 1998.

 

News from Shannon - March 25, 2000
Here's the latest: Been having some pretty serious mouth pain in the form of my peeling esophagus, swollen tissue in the mouth and now some ulcers are beginning to show up. Today marked the beginning of some nose bleeds, as a result of low platelets (still need those bad boys and they only live for a few days!). Scott tried to give some while he was in town, but it turns out he has low platelets as well. It must run in the family! My vision has become blurry. And that's when I'm wearing glasses. It's not just blurred vision, it's been difficult to focus on anything, and my eyes are watery. I'm also trying to fight back an enormous amount of medication sleepiness just long enough to send this update. I love to sleep and I've spent a great deal of my time doing just that. I also started my TPN or Total Pareonatal Nutrition. Basically it's i.v. food. I've requested sushi. Not really reading anything, especially my mail. Dad's just keeping a pile of it for me to go through later. Get up, take a bath, sleep. That's pretty much my day. OH! They did bring a treadmill up here and put it just outside of my room, so I'm going to try to walk a little in the mornings. I'll keep you posted on my progres. Take care and know that I am doing just great and not having any major problems.

News from Shannon - March 26, 2000
Here's Shannon's latest update. She is having many difficulties getting on-line at the hospital, so it's coming from us. Thanks, Teresa

 

I can't remember when I gave my last update because I've been so drugged up. This update could be interesting because I'm dictating it to my step-mom and I probably won't remember what I say. Apologies if I ramble. I had to kick my Mom out of the room because there was too much going on in the room. I've been doing a lot of sleeping and having crazy dreams-dreams about gardens, birds and the Dixie Chicks! There is this song by the Dixie Chicks called "Cowboy Take Me Away," and it always makes me think about Shea. I think I'm listening to it all the time, but maybe I'm not really listening to it; I just think I am. As far as my health goes, I feel pretty good. My mouth is, as just described by my nurse, one big canker sore, and it hurts really, really bad. My whole mouth (lips, gums, teeth even) feels like one big canker sore. FUN!!!!!!! I have had a few fevers so the doctor has changed around my antibiotics some and this morning they took a skin biopsy from my neck near the clavicle bone. We'll know the results maybe tomorrow whether or not I am having some kind of reaction to the drugs or a reaction to the graft. (Pause to think.) I gained 10 pounds overnight. I bet none of you can say that and really mean it, but I'm on the anti-chemo plan (chemo plan is the one where you lose 30 pounds in one month). But the fluids they have been giving me caused me to have a 10-pound weight gain in a 12-hour period! That would break most women's hearts, but not mine, because I am on the bone marrow plan. (I'm trying to be funny but I can't tell if Teresa is laughing or not because she has to wear a mask). Yesterday was not a good day. I just generally felt terrible. I've been throwing up pretty regularly. In addition, I had bad nosebleeds. I had this crusty piece of dried blood in my nose. I took a tissue to get it out and this long piece of "yuck" - like something from the movie Total Recall - came out and kept coming. It was like pulling a piece of 8-guage speaker wire out of my nose. Also, I told you about my peeling, scaling esophagus. In a brief moment of clarity yesterday, I thought my stomach could handle a Tylenol. Not the case. After not even a minute's time I realized I was not going to be successful with the Tylenol. I grabbed my Emesis bucket (for you novices, that's a throw-up bucket-I've renamed mine "Nemesis" bucket) and threw up dried blood along with other stomach fluids. In my bucket was a large fuzzy chunk of something which can only be described as looking like a spread-eagled mouse. It was skin from my esophagus. That's probably more than you wanted to know, but that's what my day was like yesterday. Also, acid reflux with a burned esophagus and a mouth full of canker sores feels like nothing you've ever felt before; it takes on a whole new meaning. Today is better. This morning I got up, bathed myself, got my clothes on, and my nurse asked me if I wanted to go for a walk. A treadmill had been brought up to the ward the other day, and it's been right outside my room. But today it wasn't there; it was down by some other guy's room. I said, "Hey, this guy's taken the rights to my treadmill." I told my nurse that I wanted to walk on the treadmill-and I did - one mile! That was great! Usually I just get to walk around the nurse's station. One mile around the nurse's station requires 44 laps. For someone in a Fentenyl drug-induced stupor, keeping count of 44 laps is no easy trick. I miss talking to everybody - Grandma, Tammy, and especially Shea. I called Shea this morning and left him a message to go to church and say a prayer for me. I just hope everybody that reads this will say a little prayer for me and anyone else who needs it right now. Other than that, I'm doing fine. Day #8 - 22 days to go in the hospital on the Shannon plan! P.S. Shea had a check flight the other day and aced it! Congratulations, Honey!
Teresa (for Shannon)

 

News from Stuart - March 29, 2000
Subject: Pigeons and Other Boston Happenings
Pigeons as neighbors (there are 100's): they're noisy, nasty and rude. Unless it's raining or snowing, they beat the roosters up by a couple of hours and make a constant cooing sound the entire day and into the evening hours. And I have no idea what they eat, but it all ends up white (one of nature's many mysteries) on the railings, windows and wherever else it lands! We have a nice interior courtyard of sorts connecting our building with others, but of course they've taken over the place. Perhaps we'll try cooking out there on the grill sometime (can you eat pigeons?), after we go to Home Depot and purchase enough tarpaulin to build a protective shelter! Teresa and Susan went into town yesterday morning to do some shopping, and not long after they left I heard a knock on the door. An FBI agent wanted to talk with me. I told him I was just "thinking" about cooking all those pigeons, was that a federal crime?? Actually, he was doing a 10 year follow-up background check on a female tenant in our building who works for them (always reassuring to know you have a G-Lady living close by). I had been on a self-imposed strict vegetarian diet since mid-March last year and had planned to get my cholesterol/triglycerides checked after the one-year anniversary on March 16th and after resuming my cholesterol reducing medication last Fall. So, last Friday I had the lab work done at Shannon's hospital. I also wanted to have the test done before March 19th (Teresa's birthday), since we were going to celebrate at the nice seafood restaurant where Shannon had gobbled down a 2 lb. lobster a week earlier just before being admitted to the hospital. Going on faith that my cholesterol had indeed dropped significantly (would get the details on the 20th), I enjoyed a somewhat smaller lobster, along with a nice steak filet. On Monday, I was pleased to find out that my cholesterol had dropped about 50 points to 173, but somewhat dismayed that my triglycerides were elevated at 402 (160 max being normal). Teresa, Susan and I then got a good laugh later in the week after seeing an article in the Boston Globe titled "Study links blindness, vegetarian diet," considering the 2 detached retinas and 2 cataract surgeries I had on my eyes in the mid-80s! As far as triglycerides go, Teresa would probably pay good money to also see an article published that connects high triglycerides with chewing Carefree Sugarless Gum (one of my passionate habits that drives her "nuts"), if that would lead me to a chewless lifestyle!! Shannon's had a few rough days since the transplant on 3/18th, but she continues to amaze everyone with her positive outlook and sense of humor about the side effects she is experiencing. The doctors and nurses have all assured us that these problems such as high fevers, extremely bad mouth sores, vomiting, peeling esophagus, and bleeding are all normal and part of the process for recovery. Thankfully, there are very effective pain medications that help Shannon deal with these, and in a few days she should feel somewhat better for awhile. Of course, the "graft vs. host disease" will kick in at some point, the severity of which will be an unknown until it arrives. Please continue to pray that Shannon's body will totally accept the bone marrow transplant and that she gets through the healing process without any major complications.

In His love,
Stuart

 

News about Shannon - April 1, 2000
Perception is a funny thing. This afternoon, Shannon's nurse told Teresa and me that Shannon looked good and was doing well. It made me wonder if that's what Evander Holyfield's trainer told him after Lenox Lewis had pounded on him for 12 rounds. It was encouraging to see Shannon out of the bed and sitting up in a chair when we got to her room; she stayed in the chair for about 2 hours (the first time in a week that she was awake enough to be out of her bed for any length of time). But from a father's perspective, it looked like my daughter had taken up boxing as a hobby. Her face and lips remain swollen with the appearance of having been hit a few too many times; an added feature today was her bruised eyelids. Her left arm was again swollen rather severely. There are, of course, medical reasons for these problems: low platelet counts; fluid retention resulting in a 30 lb. weight gain since her admit date of March 12; kidney and liver function below 100%; and horrific mouth sores caused largely by the pre-transplant chemo and radiation regimen and not being able to maintain adequate oral hygiene for the past few days.

 

Last July during a consultation with the director of Emory Hospital's transplant center we were told that if Shannon relapsed and needed a bone marrow transplant to survive, there would be a "miserable period" during the recovery process. Well, we're now there. The past week has been the most difficult we've faced, medically speaking, since Shannon was first diagnosed with leukemia in February last year. As described by the doctor, Shannon's condition is serious/stable. She's stable in the sense that her vital signs are normal. She's serious in terms of where she is in the recovery process and how her body is reacting to the pre-transplant chemo and radiation treatment and the post-transplant medication and treatment. Below are some things that are going on with her during this time that are at varying levels on the "concern scale":

 

1. Her liver and kidney studies are at elevated levels and must be closely monitored by the doctors. A big concern at this point is Veno Occlusive Disease (VOD) of the liver (a disease of the veins of the liver). The current elevated levels may be caused, in part, by the amount of medication she's receiving to help fight "graft vs. host disease," so they've reduced the amount and should know by this Monday if it's a more serious problem. Please pray that she does not get aggressive VOD, because it is not reversible and could be a serious complication.

 

2. She's retaining so much fluid in her body, they've done chest x-rays and found some expected fluid around her lungs. They also performed an echocardiogram today of her heart to determine the levels of fluid there, if any. The results of that test are not yet known. Please pray that her energy level would improve so she could be more mobile, and also that her kidney and liver functions would return to normal, which would eliminate the excessive fluid. Our immediate prayer is that Shannon would weather this period that began last week and endures nothing worse. As her family we desire to endure nothing worse as well; it's a hard thing to watch.

 

There is some benefit to Shannon being in a mostly drug-induced stupor during this time. She has been so heavily medicated we're hoping she will not

remember these difficult days. However, she needs to be more mobile and alert, so the medical staff has started to gradually reduce the pain medication to a level where she can remain comfortable and pain free but also get her into a more alert state. The average time for showing recovery of white blood counts is Day 21 post-transplant (next Saturday). However, we are praying for a quicker return so Shannon will not have to linger in her current condition. The medical staff is helping by starting her on a growth hormone to encourage white cell production sooner rather than later. That would mean a merciful end to this "miserable" period. Obviously many rough days will remain, but we'll feel like we've turned a corner. We are trying to hold on for better days to come, always looking UP for our strength and comfort.

 

On a more positive note, Shannon has had no major problems with high fevers; the frequency of vomiting has decreased; and her neurological function is still good-she consistently responds to voice commands given by the medical staff such as "squeeze my hand," "open your eyes," and "lift your arm." And even though Shannon is often confused and disoriented, she still knows what she loves best! Today when we entered her room, she opened her eyes and spoke several words clearly for the first time in about a week when she asked, "are we going to get some sushi?" The nurse's comment? "She really must be dreaming!" We covet your prayers for Shannon"s complete recovery and for our family as we move forward with the remainder of the post-transplant treatment.

In His precious love,
Stuart
 
News about Shannon - April 4, 2000
I sent the 17th direct deposit to NFT yesterday in the amount of $175, which included one matching gift of $50. This gives us a total of $116,075 in direct deposits received, plus $12,255 in matching gifts. "Good to see you." Although we sometimes use this greeting in a nonchalant way, it really meant something to Shannon yesterday when she said it to Teresa and me. She was glad to actually "see" us and to recognize us as being in the room with her. She had no clear recollection of us being around during the past week, one of the downsides of the drug-induced stupor she had been in for so long. We knew her condition had improved dramatically from last Saturday when she called before 8 am yesterday and talked somewhat coherently for several minutes.

 

Some good news about Shannon's current condition: although not yet functioning at normal levels, her liver and kidney functions are much improved (this has reduced our concern about the potentially damaging Veno Occlusive Disease of the liver that we mentioned in our last update); her weight is down several pounds since being able to void some of the excess fluid in her system; the swelling in her face has gone down significantly; there is less excess fluid in her lungs and around her heart; she is more alert as a result of receiving and being able to handle less pain medication the past 3 days; she has been more mobile in terms of getting out of the bed and sitting up in a chair for several hours during the day; and she has been able to speak somewhat clearly for the first time in over a week. We are very encouraged by these improvements, and appreciate very much all of the special prayers over the weekend lifting her up before the Lord.

 

Yesterday afternoon during our visit, Shannon asked Teresa and e to pray for her in specific ways. When we were through praying, she then asked Teresa to read some of God's Word to her from the New Testament. It was a very special time as Teresa read the first few chapters about our Lord and Savior, Jesus Christ, from the book of John while I massaged Shannon's feet. We could sense the Lord's presence in the room as we all drew closer to Him during that sweet and special time. Please continue to pray for complete healing. Shannon still has some excessive swelling in her left arm, and her mouth sores are still severe though somewhat improved from this time last week. As her white blood cells start coming back, they will be able to better attack the infections in her mouth and bring about the healing in that specific area. We pray that Shannon would be able to leave the hospital and come to the apartment on schedule (about April 18th), and that she would not have a very difficult time with the inevitable "graft vs. host disease."

In His love,
Stuart

 

News about Shannon - April 8, 2000
"That scared me" she said with some clarity. We agreed. That was Shannon's description of a tense, high anxiety time of 30 - 45 minutes or so just after Teresa and I got to her room yesterday to visit. She was not doing well--a

little background: During the past week there have been brief periods when Shannon was laboring very hard to breathe. This has been caused by a number of factors, not the least of which has been the lethal doses of chemotherapy and radiation that her body endured for a week just prior to receiving the bone marrow transplant on March 18. This treatment burned the inside of her mouth, throat and esophagus in ways that we could not understand lest we experience it at some point in our lives. The resulting extreme soreness and gradual healing in these areas, which has involved major scabbing of these areas, have made it difficult for her to breath or swallow for about 2 weeks now. What compounds these problems are higher than normal liver and kidney levels, which have caused Shannon to retain

an awful lot of fluid. She gained 30 pounds in about 10 days. This has caused not only her face, arms and legs to become swollen but also has created a serious problem with excess fluids in her lungs and around her heart. She must continue voiding a greater amount of fluid daily than she takes in, as well as being able to get out of her bed to sit up in the chair to help her system respond to this need. Today was the worst it has ever been. Shannon was getting oxygen, but it wasn't helping. She was fighting for every breath, and we quickly knew that something was not right. The nurse called for the doctor and then came in and immediately hooked Shannon up to a full-face oxygen mask and cranked it up to help her breath. A big problem was the fluid in her lungs, so they started giving her diuril and lasix to help her void some of the fluid. Another chest x-ray confirmed that too much fluid and/or blood (they couldn't be certain which it was or if it was both) was still in Shannon's lungs. The doctor called our apartment last night to review what they were doing to

hopefully rectify this serious problem related to infection, fluid, and/or blood:
(1).Potential infection is being attacked by antibiotics; (2). Water Pills are being given to speed the output of fluid (if the problem is just fluid, improvement in her condition should be seen today); and (3). They started Shannon on high-dose steroids to help attack the problem if the fluid in her lungs is blood. This would be very serious since it would indicate that there is bleeding in Shannon's lungs; the doctor mentioned "diffuse alvoaor hemorrhage" (DAR). They don't know if the steroids actually work. He said it would be a couple of days before they know if they are helping, so we won't know about the results of this until probably late Sunday. Please pray with a passion that the water pills will resolve the current problem in Shannon's lungs!! An equally serious concern relates to the absence today (Day 21 post-transplant) of any significant white blood cells, which Shannon must have if the bone marrow engraftment is going to "take." The doctor has told us clearly that we shouldn't get overly concerned about this now. Though Day 21 is the average day by which a transplant patient would see significant white cells, giving a clear signal that their transplant "took," the doctor said that up to half of the transplant patients are slower and may not see good white cell counts until closer to Day 30 or 31. If by a week from Monday Shannon's white counts are not up and growing, we would need to be in serious discussions with the doctors about the alternatives. They may be in preliminary discussions with the International Donor Registry next week to put them on notice as to where Shannon is with her white counts and then, if necessary the following week, the medical team would respond quickly and try to either confirm if Shannon's original donor would provide additional marrow or decide if they have to get additional marrow from another donor. It would be a difficult setback if the initial bone marrow Shannon received on March 18 does not fully "take." Please pray with abandon that God would have mercy on Shannon and allow her body to be completely healed with the marrow that she has already received!!

In His precious love,
Stuart

 

News about Shannon - April 10, 2000
Peaceful rest. That's something Shannon hasn't had for awhile, unless you consider the drug induced version. However, the prayers of many have been answered since our last update this past Saturday. Shannon's breathing was much improved by late Saturday, and she actually began to breathe almost normally by early evening. The nurses kept her on the full-face oxygen mask throughout the night, and yesterday she was weaned from it to just the nose version. She was doing even better yesterday. Shannon's white blood cell count has increased from nothing early-mid last week to 50 on Saturday, 60 yesterday and this morning was 150. And while the medical staff said the normal range is 4,000 - 10,000 it is encouraging to see some improvement in these counts. Red blood cells and platelets can be enhanced with transfusions, but the important number at this stage of Shannon's recovery is the white cell count. If engraftment of the bone marrow Shannon received is successfully taking place, the white blood cell count should climb steadily. We were hoping that this would happen by Day 21 (post-transplant) which was this past Saturday, knowing that up to half of transplant patients don't see any significant white cell counts until closer to Day 31. Dr. Antin said yesterday that he's encouraged by the improvement in Shannon's mouth sores, as an indication that although her counts have not come back it seems evident that her white blood cells have been focused on clearing up the horrific sores in her mouth. Please continue praying that her white cell counts will approach normal levels by the end of this week-a simple doubling of her counts each day will do the trick!! Yesterday Shannon was close to having a 'panic attack' caused, most likely, by being isolated in her room since March 18. She wanted to just get up and walk around, but being too weak to really do that at this point the nurse suggested a little distraction like turning on the TV to get her mind off things. Well, that was great timing as I had just arrived to visit (and to watch the final round of the Masters since the TV in our apartment was not working!), so we turned it on and in no time she was feeling a lot better and began to rest peacefully. Then, just before 7 pm the nurse put a "floating mattress pad" on Shannon's bed to see if that would help her rest even better. The concept of having air continually flowing through the pad seemed reasonable, but as I was leaving the nurse was already out looking for another pump since the first one wasn't working. A good, early report today: The bed worked (Shannon floated through the night!), and this morning she has already drank some water, gotten down 2 slushy Popsicles and has taken two pills by mouth (first time she has been able to swallow anything solid in over three weeks). To help get her strength back a physical therapist is scheduled to begin working with her today. Perhaps in a couple of days Shannon will be able to escape the prison that her room has become and take a stroll around the nurses station, or even venture up on the treadmill that has seen little action since its arrival on the scene late last month. Susan and Scott returned to Boston late Saturday and will be here for a few days, and Shannon's special friend Shea is trying to get on a flight later today. Finally, Teresa's at the hospital emergency room to have her right arm examined. It has been bothering her for awhile and really started hurting over the weekend. Please pray that this is not a serious problem and that she would regain full use of her arm very soon.

In His love,
Stuart

 

News about Shannon - April 12, 2000
In our update on Monday, we reported that Shannon's white blood cell count had finally shown some movement upward and had reached 150 (normal range 4,000 - 10,000) and asked for prayer that they would continue to increase. It's very encouraging to report that they tripled yesterday to 450 and this morning had doubled to 900!! While Shannon still has some fluid in her lungs that the medical team is focusing on and she didn't sleep much again last night, it's a relief to see this significant increase in her white blood cells. Another positive sign is that Shannon has steadily increased her intake of solid food. Yesterday, she had some Rice Krispies, milk shakes and chicken noodle soup. This morning she had French Toast for breakfast. The physical therapist will continue to work with Shannon each day to help her regain some strength. There will still be many rough days ahead with various ups and downs, but we rejoice in the improvements seen so far this week. Scott returned to Atlanta this morning (on a 6:45 am flight,ugh!!) and Shea will be going back later today; it was a good "pick-me-up" for Shannon to have them here for another visit. Now, about Teresa's arm. After the customary 3-hour wait in the Emergency Room she finally visited with a very conscientious and competent Nurse Practitioner. The diagnosis is "impingement syndrome" (why are so many ailments today classified as a "syndrome"?). Anyway, Teresa gets to walk around with her arm in a sling for a few days, and then will have to see an orthopedic specialist if it's not better in about 2 weeks. She also got a prescription for medication to help relieve some of the discomfort. We have received the official "guest membership" cards from the Massachusetts division of our Georgia HMO, which is effective this Friday and allows us to select a local primary care physician (PCP) while here in Boston. However, Teresa's already called a few to see about an appointment and,

so far, the earliest anyone can see her is July! Of course, to comply with standard HMO procedures a local PCP must do a referral to an orthopedic specialist,do you see where this is heading? We're optimistic that everything will work out, it's just SO much fun!! Finally, we appreciate the many prayers, cards and notes of encouragement and ask that you continue to lift Shannon and the rest of our family up in prayer during the days and weeks ahead.

In His love,
Stuart

 

News about Shannon - April 15, 2000
For the past month or so, we've all had to be content with giving Shannon "virtual" hugs and kisses when we visit. Just before Susan and I left the hospital tonight after Shannon returned from getting a great 30-minute shower, we were able to actually give Shannon a REAL hug and kiss and, as of today, we're not required to wear a mask and gloves when we're in her room! We have a lot to share with you tonight, and all the praise and glory goes to our Father in heaven for where He has brought Shannon since last week at this time. You may recall that last Friday was VERY INTENSE as Shannon was having a most difficult time breathing and, as the doctor said earlier this week, was close to being put on life-support. But she was stabilized the next day and, as already reported, her all important white cell counts began to rapidly increase from 50 on Saturday to 60, 150, 450, and 900, respectively, Sunday through Wednesday. Our prayers were answered. Yesterday they increased again to 2,000 and today they were 3,000!! Sidebar: Part of the reason for this increase is that Shannon has been getting "boosters" (which is normal) to help get the white count up. As the doctors have told us, now that they've stopped the boosters we should expect as much as a 50% drop in the white cell counts, which is also normal and not a major concern. Dr. Antin also told me this week that it will be normal for Shannon's white count to remain in the 1,500 - 3,000 range for perhaps a year or more. So we aren't going to "panic" when the drop occurs okay?! The great news for all of us is that Shannon may very well be able to leave the hospital by early next week and come to the apartment, or it could be a bit longer. A couple of days ago the doctors said they might move her to a different ward on the floor for less serious patients next week, and just that prospect really lifted Shannon's spirits, so whatever happens will be a great step forward in her post-transplant treatment! She has definitely rebounded remarkably over the past 7 days, and we are all very grateful for that. But to help expedite the actual discharge date, Shannon will need to continue making improvements in areas such as the following: her ability to eat and retain solid foods; regaining some much needed strength and mobility; and to be able to easily go the to the bathroom on her own (since her catheter was removed today). She is aggressively working on these now. Please lift these up in prayer on Shannon's behalf.For those of you who don't really know Shannon, trust me when I say that if her discharge date depends a lot on what she must do to make it happen it will happen sooner than later. She is very courageous and a terrific fighter, and can handle pain and discomfort better than anyone I know. So, we ask for your prayers that Shannon will continue to improve and not be faced with any significant setback. While we anticipate "Graft versus Host Disease" to rear its ugly head at some point, we're also prayerful that it would be no more than a mild case. The Lord works in mysterious ways! I concluded my update on Wednesday with the ordeal concerning Teresa's "impingement syndrome" effecting her arm and shoulder area, and the challenge we faced in finding a local Primary Care Physician (PCP) to see Teresa soon so she could get a referral to an Orthopedic Specialist by next week. Well, within 3 hours of that update, Teresa and I had randomly looked up a PCP in the HMO directory whose office happened to be within walking distance, dropped in 'unannounced' and she left with an appointment for next Tuesday and, by the way, her PCP only refers patients to the group of Orthopedic Specialists located at Shannon's hospital (Brigham and Women's)! I also raised the question Wednesday as to why so many ailments seem to be classified as "syndromes" today. While I was not able to find any information on the Internet about Teresa's "impingement syndrome," there are others listed that you just won't believe unless you perhaps have "believers syndrome"!! For instance, below are a few references that I found:
1. The Snooze-Alarm Syndrome; When You Have The Desire, But Lack The Discipline.
2. Computer-Related Syndrome; The Prevention and Treatment Of Computer Related Injuries.
3. The Left-Hander Syndrome; The Causes and Consequences Of Left Handedness.
4. Overcoming the Ostrich Syndrome; Acting With Compassion For All Creatures (my comment: give me a break!!)
5. The Sick-Building Syndrome; How Indoor Air Pollution Is Poisoning Your Life and What You Can Do About It.
6. The Centerfold Syndrome; How Men Can Overcome Objectification and Achieve Intimacy With Women (my comment: whatever).
7. The Haystack Syndrome; Sifting Information Out Of The Data Ocean.
8. Ushers Syndrome; What It Is, How To Cope and How To Help.
9. The Love Trauma Syndrome; Free Yourself from The Pain Of A Broken Heart.
10. The Silverback Gorilla Syndrome; Transforming Primitive Man (my comment: okay)

 

Well, I'm sure there are some legitimate "syndromes" that concern people today but, based on the above sampling, perhaps we're overusing the term a bit. I mean, in just a few weeks in Boston, I could add several to the medical

journals. For instance:
a. The No Parking Space Syndrome; There Aren't Any Available, So Get Over It!
b. The Ruts In The Road Syndrome; Nothing's Going To Be Done About Them, So Get Over It!
c. The Noisy Pigeons Syndrome; They Are, You Can't Do Anything About It, So Get Over It!

 

That's all for now, there seems to be a trend developing (which of course is The Developing Trend Syndrome.). Stop it, Stop it!! Have a great weekend, and thanks again for all of your prayers and emotional support.

In His love,
Stuart

 

News about Shannon - April 20, 2000
Our hopes for Shannon's release from the hospital early this week didn't materialize, but the doctors told us this morning that if the following specific things happen today and tomorrow she should be able to be discharged to our Boston apartment before Easter Sunday possibly tomorrow but more likely Saturday.
1. They are taking her off all I.V. fluids today, which means she must be able to drink (and hold down) daily a minimum of 1.5 liters of water, juices and/or other drinks, which will help ensure that she won't get dehydrated with a fever too quickly once discharged and then have to immediately be readmitted to the hospital.
2. In addition to the large number of pills she has already been taking, Shannon must also be able to ingest (and hold down) at least 15 new pills which will replace some of the previous I.V. medications.
3. She must also be able to move around on her own, as well as walk up a flight of stairs. Two days ago, Shannon was only able to slowly shuffle around the nurses station 2 times; yesterday, she did 7 better paced laps and also

pedaled for 10 minutes on a stationary bike! Today, with the 'walker' that the physical therapist brought her, I imagine the laps and pedaling will both continue to increase.
4. Finally, less emphasis was placed on Shannon's ability to eat solid foods since that is expected to take care of itself, and her appetite has increased some the past couple of days and should continue to do so. After being with Shannon for a good part of the afternoon before returning to the apartment for dinner, she called us about 7 p.m. last night to ask if Teresa and I would come back to her room and read the Easter Story to her. We got back there a little after 7:30 p.m. and Teresa read to her from the book of Luke about the Last Supper, the arrest, conviction, crucifixion and resurrection of our Lord and Savior, Jesus Christ, while I rubbed her feet. What followed was a special time of providing some much needed comfort and love to Shannon to help her cope with what has become an overwhelming emotional ordeal for her. She shared some heartfelt fears, frustrations and uncertainties about her health and medical situation, and simply said more than once with tears in her eyes, "I just want to go home, I just want to go home." May God grant this desire of ours by Saturday. It will mean more to Shannon and us than I can adequately express.

In His love, 

Stuart

News about Shannon - April 21, 2000
Our many prayers have been answered. Today at 4 p.m. Shannon was discharged from her room of isolation the past 6 weeks at the Brigham and Women's hospital. We all gave Nori (Shannon's special nurse "angel" during this ordeal) a big hug and then thoroughly enjoyed the one-half mile ride back to our temporary home in Boston; it was a very joyful and emotional homecoming. Through tears of prayer and thanksgiving on this Good Friday, Shannon said that this was the happiest moment of her life. We're very glad to have her home with us. I headed off to the pharmacy to get the 13 prescriptions filled that Shannon would be taking, to accompany the 5

other over the counter pills and other medications that we already had. We are thankful too for insurance, having only to pay about $200 for all of these that had sticker prices of just under $2,000! The leader of the pack was a 25-day supply of special little pills for only $571.37 - shall we all begin investing in pharmaceutical companies?! While I was gone, Teresa stayed to help Shannon get settled in after her exhausting walk up about 12 steps leading to our apartment. After resting a bit, Shannon had a couple of glasses of water and tea and then maneuvered down the stairs to her bedroom. For the next few days Shannon's primary goal will be to get some quality S-L-E-E-P, since she has had precious little of that the past several weeks. In addition, she must continue to drink at least 1.5 liters each day and, of course, take all her medications as well as get a little exercise walking around the apartment.

 

Our mission, should we decide to accept it (we have), is to make sure that Shannon drinks enough fluids, takes her medications and exercises any one of which may interfere somewhat with her primary goal. But that's okay, because

just before leaving Shanon's hospital room today after telling Nori that we'd make sure these things were done, Shannon spoke those magic words that all fathers yearn to hear from their daughters (maybe more so when they're 13-18 years old!): "Dad, I'll do anything you say." I have witnesses. Well, we are all very tired now so will call it a day. It has been a good day. Please continue praying for Shannon as she begins getting her strength back. She will make routine weekly visits to the Dana Farber Cancer Clinic, beginning next Tuesday. But unless she gets a high fever or has some other complication develop, her only return visit to the hospital should be to drop in for a final goodbye to Nori and the rest of the medical staff when we're

about ready to return to Atlanta in a couple of months or so. Have a joyful Easter weekend!

In His love,
Stuart

 

News about Shannon - April 25, 2000
It's about 6:00 p.m. and Teresa, Shannon and I just returned to the apartment after a very long day. It was pretty much a "sleepless night in Boston"...and not because of Meg Ryan, but primarily due to some frequent coughing episodes that Shannon experienced during the night. The worst one at about 4:30 a.m. involved some serious gagging and hacking (phlegm being the major cause) that concluded with the three of us all sitting on Shannon's bed. About 15 minutes later after it had cleared up some, Shannon said in her uncanny humorous voice "I've got to think of something better to do at night than this." Well, it wasn't too bad after that. Shannon simply put on her headset and listened to CD's until the alarm went off at 7 a.m. After a shower and taking her first round of pills, Shannon hustled (think slow motion at this point) out of the apartment, down the stairs to the car and we all headed off for her first follow-up appointment with Dr. Antin at the Dana-Farber Cancer Clinic since being discharged from the hospital last Friday. The doctor's most important points to Shannon today were that she must begin eating and exercising more consistently during the day in order to regain some strength, energy and to stabilize her weight. She simply has had no appetite or desire to eat (this being the same girl who pre-transplant could put away $30 worth of sushi in an hour or so and who consumed a 2 lb. lobster the day before being admitted to the hospital on March 12). There is even some level of 'fear' now involved related to her eating, in terms of the anticipation of not "holding it down." However, she has now dropped seven pounds in four days and is already 10 pounds under her weight on March 12! As Dr. Antin told us today, the current trend is not a healthy one and not getting into a better eating mode quickly would only increase the odds of Shannon getting sick to the point of having to be readmitted to her least favorite place in Boston-the hospital. Speaking of food, it's time for a dinner break. Some other highlights of our day:
1. Just before leaving the apartment this morning, Shannon saw a mouse scrambling across the living room floor only to disappear under the wood burning stove. We saw one earlier while she was still in the hospital and the landlord sent someone over to do some preventative maintenance, so we'll just continue to seek out and destroy the little critters. We mentioned our new roommate during the Q and A with Dr. Antin, and was surprised when he said that this is not really a health concern. We're still going to enlist the rat patrol and do damage if we can. Please no emails from any animal rights activists!
2. It hit me just before we met with Dr. Antin-a sneeze, then another, until I could sense a cold coming on (someone asked if it was an allergy since it is spring in Boston. I said no, there is no pollen in Boston today, just 42 degrees with a wind-chill of 23!). Anyway, Dr. Antin gave me some helpful hints to reduce this from causing Shannon any problems, and suggested I try Zinc lozenges. I went straight to the CVS and have been popping them every 2 hours since.
3. After meeting with Dr. Antin, Shannon went across the hall to get a bag of platelets (her count was only 1,000, the lowest they've probably ever been). So, one of the medical technicians (Peter) who also worked with Shannon

during her hospital stay, hooked the platelets up to the I.V. and started to leave. Then, the 'one-in-a-million' accident happened when the connector on the bag came loose and the whole bag of platelets spilled all over Shannon's clothes-just another day at the office.
4. After the new bag of platelets arrived and that procedure was finally completed, I rolled Shannon out to the front lobby by the security desk and left her to go get the car. When she got in the car, she was just shaking her

head. As she was waiting for me, a lady came up behind her and started giving the security guard grief over her $2.00 parking ticket--seems like she didn't think it should be more than a dollar. Considering what Shannon has

been through the past few weeks (months), she couldn't help but just look at the guard and smile.
5. Finally, on the way to the apartment from the clinic Shannon just wanted to ride around some since it was a beautiful sunny day (even with a 23-degree wind chill). It was her first official free time since being admitted, so we enjoyed the sightseeing trip and even saw some trees with some green leaves on them! Teresa had left the clinic early because of the long-awaited appointment with an orthopedic specialist for what had been diagnosed as "impingement syndrome" of her right shoulder. We decided to drop by the doctor's office and give Teresa a ride home, so we did. But it turns out her problem isn't impingement syndrome after all. She has "frozen shoulder," which will require months of physical therapy and, perhaps, surgery at a later time. For today, the doctor brought out a 'foot-long' needle and squirted some Novocain/steroid solution all around in her shoulder joint just enough to cause her some real exciting short-term pain. The phrase "no pain, no gain" took on personal meaning for Teresa today, and we're prayerful that over time she'll be back to her old self-keeping that bowling average up over 200.

 

Please continue praying for Shannon's recovery. Specifically: (1) that she will meet the challenge to eat and exercise at the required levels even when the desire is not there, and (2) that the new pills prescribed today for coughing and nausea would help eliminate these problems, which not only effect her ability to sleep but also saps what little energy she has out of her. Would also appreciate your prayers for Teresa and me as we try to get over our current little bumps in the road.

In His love,
Stuart

 

News about Shannon - April 29, 2000
It wouldn't surprise anyone to know that sleep and rest are fairly important for Shannon (and us) in the recovery process. You may recall that we hadn't gotten much sleep this past Monday night just prior to our Tuesday update, because of Shannon's coughing problems. But Dr. Antin changed her prescription for coughing medication at the clinic on Tuesday, and we all slept great that night. Things were again going quite well Wednesday night until 3:30 a.m., when it sounded as if a war had broken out in the ceiling above us! The banging around, clatter and thuds got so bad that Teresa went upstairs to try to get away from it. After an hour or two the battle was over. When we all 3 gathered together later that morning, my thought was that perhaps the bait put behind a couple of walls the previous week had finally taken effect on the mice. Teresa was skeptical and was taking a "wait and see" position, while Shannon just couldn't believe how much racket there was like a barroom brawl (so I imagine). I got a call back from someone with the building management company last night in response to my earlier request that they not do their periodic bug spraying for awhile (at Dr. Antin's suggestion). During the call, I learned that indeed the "rat patrol" had been active. When I mentioned the madness that went on Wednesday night, he told me they had just treated the basement in a major way a few days ago with some special powder that is especially effective on mice. They must be working their way up through the walls and ceiling trying to escape to a higher floor, but we know for sure at least a couple or more didn't make it!! And we don't feel bad about it (at all), which I know conflicts with one of the syndromes I mentioned earlier this month called "Overcoming the Ostrich Syndrome; Acting With Compassion For All Creatures" (compassion for mice at 3:30 in the morning just isn't in the cards at this point!). Tuesday at Shannon's first clinic visit her platelet count was only 1,000, so she received a bag then and we made an appointment for Thursday at 9 a.m. so she could receive another bag or two. Well, after the less than restful night we had on Wednesday as described above, we were anticipating getting back home by 10:30 or 11 a.m. so we could take a nap. But then sometimes we anticipate things that don't happen? As it turned out, when we showed up just before 9 a.m., the clinic showed no record of Shannon's appointment...just another "glitch in the get along." After awhile they did draw some blood and finally some time after lunch the platelets arrived. But we learned that she also had to have 2 bags of blood, and by the time all that was over we were walking out of the clinic just before 6 p.m.! During the day Dr. Antin dropped by to visit and see how Shannon was doing. I took the opportunity to thank him very much for the tip on Tuesday about taking zinc lozenges to head off the onslaught of a cold. It worked. By Thursday morning all the sneezing and cold symptoms I had were gone! He wanted to check Shannon's mouth to see how the healing process was going. She said it was much better and, after he inspected it, Dr. Antin said "For someone whose mouth looked like it had been through a Waring blender, it looked pretty good." A few weeks ago during the very roughest part of Shannon's post- transplant recovery, the doctors had commented that Shannon's was the worst case of mouth sores they had ever seen. Well, let me share some encouraging news about Shannon's progress. Although her platelet count is not a major concern at this point, it was exciting to hear that from a miniscule 1,000 on Tuesday morning it had elevated to 92,000 after the bag she received Thursday afternoon. It will still probably fluctuate, but that was good news. In terms of exercise and eating, Shannon is making some steady progress. Shannon's goal since her discharge has been to consume a minimum of 1,700 calories along with 1,800 cc's of fluid each day. Although she had dropped about 10 pounds from her discharge on April 21st to this past Thursday afternoon, she has since added back about 3 pounds and has held steady the past 2 days. She will be very close to reaching these 2 goals for the first time by the end of today. The challenge is for her not to let up even when eating right now is not the most exciting thing in her life to do. Today was also the first time that Shannon was able to go outside for a couple of fairly long walks up and down the sidewalk; the sun was actually out and it was in the 50s--so much better than the 30s with wind-chills in the teens 2 days ago. Also, to help pass the time around the apartment and to get Shannon's brain waves working again, Teresa picked up

some games today. We thoroughly enjoyed playing Yahtzee and Scrabble this afternoon, and Shannon got her very own Walt Disney coloring book-The Tigger Movie. She's doing quite well keeping the colors within the lines!! It has

been a pretty good week, and we look forward to Shannon's continued progress. We appreciate all the prayers, cards and words of encouragement on our behalf.

In His love,
Stuart

 

This is exciting!
News from Shannon - May 4, 2000
Hello to everyone from a happy and recovering Shannon Mosher!! We went on a picnic today! Would you believe that it is actually me, Shannon, sending you an update today? My uncle Robert came by and picked up me, my mom and grandma and we went to the park and ate a picnic lunch and enjoyed the beautiful weather, walked along the pond and in general had a GREAT time! We admired the blooming fruit trees; cherries, maples, dogwoods, all the tulips, bleeding hearts - everything is just Godly!! I was discharged on Good Friday and let me tell you something - it's been Good Monday, Good Tuesday, Good Wednesday ever since! There's something about sleeping in your own bed. I've been in our Boston apartment with my routine of taking medications, exercising (walking the halls if the weather is bad) and starting to eat again. Yes, I again lost 30 pounds on the chemo plan - but this time it will be much harder to gain back much needed weight. I had liquid food for six weeks, so you can imagine my stomach started out the size of a dime when I was released. Learning to eat again is DIFFICULT to say the least. Last night I ate a decent size dinner of 4 oz. of salmon, a red potato, broccoli and 3 artichoke hearts. I surpassed my goal of 2000 calories for my daily intake - do you know how hard that is? I also have to track how much fluid I intake and our days in the apartment go by pretty quickly with a busy schedule. Oh guess what? My fingernails are longer and stronger than they have ever been. I might not have to worry about getting them "done" anymore! That's different. My donor is European and I wonder if I'll pick up certain traits. Wouldn't that be interesting? I have to wear sunscreen for the rest of my life - #45 winter, spring, summer, fall. I had so much total body irradiation that the sun added to the dose I had could actually cause me problems. I guess that means I really will have smooth skin when I'm 65, huh? Seriously though, my skin is so dry, I could BE the alligator on those commercials. It's like I've been baked in an oven WWAAAY too long. But, we're trying to overcome that with tons of lotion daily. The bald head is normal to me these days and I really can't remember what it's like to have hair! My hair is supposed to start growing back 3 months post-transplant (maybe mid-June?) I'll get that 'baby bird' fuzz back. I bought a digital camera when I first went into the hospital. Shea is bringing it this weekend, so I'll try to take some pictures that I can upload directly from it. I must warn you that a super chemo and total body irradiation can wreak havoc on your looks - so be prepared. Oh another thing--my eyelashes and eyebrows didn't really fall out this time, but everything else did--wierd! Hope to send another update soon!

Shannon

 

News from Shannon - May 6, 2000
Today was another great day! The weather in Boston is finally warming up, but what a swing - tomorrow it's supposed to be 90 degrees. Hard to believe. I'm so proud of my mom and grandma! They installed a window air condititioner all by themselves! It works great, we're comfortable and it's sealed up tight. (My dad is very thankful. He was going to do that when he came back up to Boston next week). Mom also bought two hepa filters today. I've had some really bad coughing spells where I spend half an hour hacking and it can really be sickening. We spent the day doing some arts and crafts to take a break from the busy week. Grandma bought this embossing kit that makes BEAUTIFUL cards, so I've started some thank you cards. I've only got about 2000 to go!!!! I've got some time on my hands so i'm going to try to thank everyone who has helped me in some fashion. A large task indeed! My eating has really improved this week. Tonight I ate a 3 oz. breaded chicken breast cooked in canola oil, black eyed peas with canola oil, and a red potato loaded with butter and a few carrots with sugar. My fluid intake has been over 1700 every day (I'm drinking a TON of tea) this week. My last weight measurement was 136.5 poounds this afternoon. You have a bone marrow transplant - you learn about food and measurements. Shea is flying up here Sunday to spend a couple of days! Yeay! I've been in a Shea withdrawal state for weeks now and I can't wait - we can go the park and have picnic lunches and walk around and have some normal quality time together. It's the first time I'll see him out of the hospital. That's kind of wierd. I don't really remember any visitors when I was in the hospital. We'll have a digital camera so I can send some recent pictures. My dad has kept a "photo journal" of my entire leukemia experience, but we don't have too many pictures of this bone marrow transplant. That's probably for the best since many weeks were spent in a stupor by me anyway. Well, my head keeps nodding off. I need to get some sleep. Actually, I took a mild sleeping pill last night to help combat the coughing and I'm so sensitive to medications that I've been half asleep all day today as well!! Talk to you soon!!

Subject: FW: web update link

Date: Sat, 6 May 2000 22:20:34 -0500

From: "Mosher, Shannon" <smoshe01@sprintspectrum.com>

To: "'smosher@bellsouth.net'" <smosher@bellsouth.net>

CC: "Mosher, Shannon" <smoshe01@sprintspectrum.com>

From: Mosher, Shannon

Sent: Saturday, May 06, 2000 11:18 PM

To:   'smosher@bellsouth.com'

Cc:   Mosher, Shannon

Subject: web update link

 

Hey Dad,

Hope all is well in Jacksonville and you guys are having a good time. I've been online  most of the day and making thank you cards with this embossing kit grandma brought (teresa will LOVE it).  I printed the list of all up to date contributors and saw that there are more than a thousand of them so I'm thinking about doing the mail merge thing and pre-print some cards or something to send thank yous.  that's a LOT of cards.  what do you think?  also, Francis has changed the  "prayers and messages for shannon" link to come to me.  i will forward copies of everything to you so  you'll have a copy same as always.  let me know if this is a problem. Shea is flying up tomorrow for a couple of days.  i think we'll have a nice time at the park and enjoy the sun.  We've been having a great time and mom and grandma have settled in just like you guys did after a day or two to get the routine down. i feel completely fine.   walked to the corner where you turn to go to the hospital (your little cut through road) and back without stopping yesterday and today.  how far do you think that is?  food calories are really getting up there. ate canola cooked chicken tender, black eyed peas, potato and fluids have been around 2500.  i've been really thirtsty!!!  they are coming to clean on tuesday morning while we're at the clinic and the maintenance man is coming by monday to secure the air conditioner from the outside and check the seals.  well, guess i'm gonna go now.  hope all is well.

love you

shannon

News from Shannon - May 8, 2000
I can't believe I'm saying this but it is really HOT in Boston today - 82 degrees right now! Shea flew up here yesterday from Atlanta and it was cooler in ATL. Mom, grandma and I spent most of yesterday relaxing and reading and taking naps. It was one of those lazy days. When Shea arrived, I had my mask and gloves on and scurried out the apartment door to let him in. I think he was very suprised to see me up and about, much less answering the door! It is so great to see him! The last time he came to visit was three weeks ago and I was not in a very good state and I don't remember much from the hospital. We were going to spend the day in the park, but the heat is too much. I guess it'll be Scrabble, stenciling and reading again today. We'll go for a walk tonight when it's cool. The air conditioner couldn't have been installed with better timing! I did get sick this morning (which is becoming very rare) I think I took too many medications on an empty stomach. With 18 meds a day, you can imagine. One of my immune suppressing drugs, Cyclosporin, causes me to tremble and shake sometimes. My handwriting is terrible but improving. I'm thankful to be able to type again. Shea's making some lunch and it smells wonderful (he's a great cook). There are so many foods that I would LIKE to eat but I just can't bring myself to eat. That will change in time. Well, it's time to take a nap, so I'll update again later.

 

Shannon L. Mosher

 

News about Shannon - May 11, 2000
Shannon was excited last weekend when Shea came to Boston for a visit. They were able to spend some special time together, taking advantage of the warm weather to walk around the park not far from the apartment. But the more important news is that she is suffering from "graft vs host disease (GvHD)." A slight rash on Sunday worsened on Monday, accompanied by increased vomiting and diarrhea, all of which are symptoms of GvHD. Although this was not totally unexpected, it's our prayer that Shannon would not linger with a severe case of it. To combat GvHD, Shannon was readmitted to the hospital on Tuesday after Dr. Antin saw her at clinic, and some I.V. drugs soon improved the rash dramatically. Yesterday (Wednesday), she had a high heart rate so they ran several tests, including an EKG, chest x-ray, lung scan and echocardiogram. There was some inflammation of the wall of the heart, which is treatable, and they discovered a little fluid in the lining of her heart. The medical staff was basically in a 'wait and see' mode, but said there's a possibility Shannon could be released sometime this weekend. She has received several bags of blood and platelets, and generally hasn't had much of an appetite or been able to walk much since being admitted again this past Tuesday. Please be in prayer that the medical staff would get these things under control such that Shannon could leave the hospital very soon.

 

In His love,
Stuart

News about Shannon - May 15, 2000
Eons ago, during my football playing days at Georgia, a coach would sometimes give us a "gut check" challenge at a critical point in a game. I suppose the challenges were directed as much at our hearts and lungs as our 'guts' in the sense that to rise to the occasion at hand required the heart desire to make the plays and to win the game, and the ability to drum up an extra measure of lung capacity during the 4th quarter to prevail. Well, over the past few days we've come to understand that 'gut check' in the world of post-transplant treatment, dealing with "graft vs host disease" (GvHD) and other issues, involves all of these body parts and more. What we're learning has not been a very pleasant experience for Shannon or for the rest of the family. Several weeks prior to being released from the hospital on April 21st, the doctors had discussed with Shannon the possible need to perform a bronchoscopy to determine what was going on with her lungs which appeared to be retaining water and/or blood. However, since she responded okay to drugs at the time, the procedure was not done. Since being readmitted to the hospital last Tuesday with shortness of breath, diarrhea and vomiting problems, the doctors have been doing a battery of tests on Shannon's heart, lungs, and upper and lower 'gut' in an attempt to determine the extent of any GvHD, infections, and other related problems. The x-rays and cat scans have revealed fluid around her heart and an expanded mass in her lungs that could be scar tissue and/or a bacterial infection. Another echocardiogram will help the doctors assess any outstanding concerns related to the heart. The pulmonary specialist and Shannon's medical team of doctors concluded earlier today that the bronchoscopy should be done immediately in order to get a biopsy, which should finally resolve what the lung problem is which could dictate an adjustment in her medications or treatment. This procedure involves a flexible fiberoptic tube with a camera at the end being passed through the nose and into the respiratory tract. Even with the anesthesia used to help the patient's comfort level it seems, at best, to be a fairly miserable procedure to endure. Also, the risks of a lung collapsing, bleeding or other more serious problems developing had to be discussed. Just the thought of it today caused Shannon to throw up. We have felt blessed since the decision was made last November to have the transplant done at Brigham and Women's Hospital. And while the doctors, nurses and other medical staff have been outstanding since Shannon's initial admit date of March 12th, and all through the pre-transplant, transplant and through Day 57 post-transplant (yesterday), some of them got scratched from our Christmas card list today. The reason? A comedy of errors and mis-communications (which really weren't funny) between the lab and the pulmonary and medical team doctors over about an 8-hour period today. We understood at 7 am that the bronchoscopy really needed to be done today. It was after Shannon's anxiety about the procedure caused her to vomit, that she was taken to the Endoscopy Department at 1:45 pm to be prepped for the 20-30 minute procedure scheduled for 2:15 pm. At 3:20 pm the nurse came to the waiting room to get us. Only problem was, they hadn't done the procedure! Without getting into the gory details, it was a royal foul-up from start to finish. We have since gotten enough apologies to last until Christmas. More importantly, everyone involved has assured us that a final determination and consensus between the pulmonary and medical team will be made in the morning as to whether or not they will even do the procedure at this time. That's right--seems as though there was some thought late today that Shannon may be improving enough on her own to eliminate the need for the procedure now (with the caveat that if this is the decision it doesn't mean that she won't ever have it done). If they decide to do it tomorrow, it will be done without a single glitch--we've got their word! And as if the bronchoscopy was not enough, Shannon also faces the possibility of a similar invasive procedure designed specifically to investigate the upper G.I. tract, as well as perhaps later having to get a biopsy of her colon. Believe me when I say that it causes Teresa and me and the rest of the family great pain to know that Shannon is having to even think about these procedures, let alone having to face the prospect of having them done after all that she has already endured. On a positive note, the doctors did say that we might be able to take Shannon outside (in a wheelchair) to enjoy the outdoors a day or so after the procedure if it's done. Yesterday was an absolutely beautiful day with the temperature in the 70's. Please pray with us that Shannon will get through all of these procedures, as required, with the least degree of pain and discomfort possible...and that the doctors would then be able to target the problem areas and get Shannon back to the point where she can return to the apartment and continue her recovery.

 

In His love,
Stuart

 

Shannon Update - URGENT PRAYER REQUESTS
Dear Praying Friends:
We need your earnest and urgent prayers to God that He would spare Shannon's life. She has taken a dramatic turn for the worst since the bronchoscopy yesterday. Though there were some favorable signs at the meeting this morning with the doctors in her room, during the course of the day her breathing has worsened and her liver and kidneys are functioning somewhat less than 100%. She is now in very serious condition and is on a full-face oxygen mask fighting to maintain an acceptable breathing level, but the doctor fears she won't be able to maintain the present effort it's taking. It could be 2-3 days before that determination is made, or it could be as soon as tonight. If she can't, the only option is to intubate her on a ventilator and continue medications to try to fight off the infection and other problems going on in her body. This would put her in a state of critical condition, with not a good prognosis. We ask you earnestly to pray for Shannon and that our Heavenly Father would have mercy on her and heal her body; pray that Shannon would continue to be strong, courageous and not give up; pray that the medications she's receiving would rid her body of the infections; pray for Teresa, me, Susan, Scott, Derek, Marguerite and Shannon's other family members as we face this most difficult situation; pray for a Holy Miracle.

 

In His most precious name,
Stuart

 

Shannon Update, May 18, 2000
Around 8 pm last night the doctors had to ventilate Shannon by putting a tube down her throat and into the lungs, which in a short while was helping her to breathe more easily than with the full-face mask. She is in critical condition, but she made it through the night. She cannot speak, which is so hard on us who desperately want to hear her voice again. She is sometimes sedated such that she can open her eyes, but most of the time she's more heavily sedated and, though she often can hear us, we can only communicate by rubbing her arm or just holding her hand and comforting her with words. This morning's meeting with the doctors revealed small improvements in some areas, but the most critical problem still remains her lungs at this point and, specifically, the fact that they are getting stiffer. Our most urgent prayer requests today are that her lungs would become less stiff, and that Shannon would increase her ability to breathe at a normal rate more on her own. The doctors have indicated that moderate to significant improvement in her lungs during the next 24-48 hours must occur, or the picture is bleak. They will have the biopsy results back today, and will at least be able to determine if there is a specific infection that must be attacked aggressively with medication. If her lungs do respond favorably, there are still critical issues with her liver and kidney functions. Please also pray that these would begin immediately to show steady improvement. We know that Shannon is in God's hands, and pray that His will for her life be done. Our fervent prayer is that He would do a miraculous healing work in Shannon's body today and tomorrow. Our God is a merciful, loving, all knowing and all caring God. Help us to make our plea in faith on her behalf with this knowledge before us.

 

In His love more now than ever before,
Stuart

 

5/20/00

Our precious Shannon, a child of God, went to be with her heavenly Father this morning on this beautiful sunny day in Boston. While we grieve deeply over our loss as it effects us personally here on earth, we rejoice that Shannon is no longer in pain and that she is now experiencing the glory of heaven. No more excruciating medical procedures, multiple medications and anxiety over what comes next. Our darling daughter is now healed.

 

The memories and gifts Shannon leaves behind to her family, friends and even to many who have not personally met her, but have been encouraged by her story, are too many to list. But several are special: her exceptional smile; her bubbling personality; her beauty, with or without hair; her upbeat attitude; her sense of humor; her courage in the face of trials; her zest for life; her love for sushi; her faith in God; her fetish for hats; her love of her job; her optimism and confidence; her spontaneity; her inspiration to others; her love as a daughter and sister; and her ability to cultivate instant friendships.

 

It has been a long, difficult struggle the past 15 months, but in so many ways the journey was the best of her life. I'd like to reflect on this in some depth at a later date after things return to some level of normalcy for us; perhaps you will find it uplifting and encouraging in some way. Let me close by sharing Shannon's favorite scripture, which she repeated often and held close to her heart over the past 15 months: "Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will direct your paths." Proverbs 3:5-6. In lieu of flowers, contributions in memory of Shannon may be made to the Dana-Farber Cancer Institute - Bone Marrow Transplant Research, in memory of Shannon Mosher, 1309 Beacon St., Brookline, MA 02446. Your prayers for our family are appreciated.

 

Stuart

 

Thoughts on Passing
It was the second toughest week of our lives, as her family and closest friends laid Shannon to rest in a private graveside service at Peachtree Memorial Park in Norcross, GA last Thursday afternoon. The memorial service on Saturday provided some measure of relief from the pain, as it gave us all an opportunity to celebrate the uniqueness and special qualities of Shannon's life. It also provided reassurances from God's Word that there is hope for the future to all who have accepted Jesus Christ as their Lord and Savior. What a joy it will be to spend eternity with Shannon in heaven, after our purpose here on earth has been fulfilled. Won't you join us?! The week before last was, of course, the toughest on us all as family members and her boyfriend, Shea, stood by Shannon's bedside Saturday morning as she slowly slipped away. While we were assured that she was in no pain, that did little to remove the agonizing pain that we all felt in those final moments. Tears were flowing as we tried to give Shannon some final comfort by reading her favorite scripture, Proverbs 3:5-6, and singing "Jesus Loves YOU" and "Amazing Grace" and telling her how much we loved her. It's my prayer that she was able to hear our final farewell and was comforted by it.

 

The grieving has not stopped. It will take some time. But please know that the immediate family members sincerely appreciate the tremendous emotional and prayer support that our extended family, friends and even strangers have

provided during not only the past two weeks but also from the beginning of Shannon's battle with leukemia in February last year. There are some rather remarkable, uplifting things to share about Shannon's 15-month journey

that perhaps may relieve some of the pain you feel personally. I'll plan to give you my thoughts about these in the near future. Teresa and I will fly back to Boston next Monday in order to return the leased furniture, cut off the utilities,

clean up the apartment, and pack up our personal belongings for the long drive back. We're not looking forward to going back to Boston. A couple of friends of Susan's will also meet us there to help in this effort, which is greatly appreciated. Please pray for traveling mercies and that we can gradually release the sad memories of our time in Boston.

 

In His love,

Stuart
5/29/00