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Wednesday, October 27, 2004 1:10 PM CDT Here's the latest:
o Todd continuing to do well at Samford while keeping a close watch on counts, etc., going forward. We continue to appreciate all prayers for him to stay in remission.
o We met Todd's donor via phone a few weeks ago. Wow! A special moment to meet a wonderful person with such a giving heart. The conversation was so, so special. Her gift of life to Todd was something that even his own parents could not provide.
o The San Francisco Nike Marathon was last Sunday. It was an awesome experience....complete with ALOT of HILLS! In fact our coach's husband indicated this was the toughest course he had experienced in the 24 years he had been running marathons. I teamed up with Sandra N. and Amy R. from BBC. We trained for the previous 5 months with The Leukemia and Lymphoma Society Team-In-Training. We got up as early as 3 a.m. on Sunday 10/24 and were on the course in the dark at 5:30 a.m. We all finished: Sandra and I walking the 26.2 mile full marathon and Amy walking the 13.1 mile half marathon. We raised in excess of $11,500 to help leukemia and lymphoma research. The Marathon raised a total of $10 million -- phenomenal for a first time event. There were 9,000 runners and walkers -- with 3,000 participants being from The Leukemia and Lymphoma Society Team in Training Program (www.leukemia.org). These donations came from BBC church members, fellow employees, my employer, friends and families. THANK YOU ALL! We will be more formal with our personal thank you's, but please take this as an interim expression of our sincere appreciation for all your support both in terms of donations and just encouraging us to 'hang in there'.
o Please continue to pray for the many, many children affected by leukemia or lymphoma. Especially remember Margaret Ann C., Sean F., Ralph C., Brad E., Johnathan A., Clark B. and Samantha R.
Agape,
"Marathon Mom"
Monday, September 20, 2004 2:23 PM CDT Hi!
Here's the update:
We received a phone call and a letter last week from Dana-Farber indicating Todd's donor who we have been referring to as "Hope" has indicated she would like to release her identity to Todd and get to meet him. Her real name is June. She lives in New York in a town not too far from White Plains -- where ironically Todd few into a couple of times on corporate jets and he and Richard drove over to Boston for appointments. She was not at home when he tried to reach her on Saturday, but he left her a voicemail. We also have her email address and mailing address.
This is so huge! We were prepared to respect her wishes to remain anonymous if she chose to do so -- and Dana-Farber told us there are alot of cases where the donors prefer to do that. What an awesome, unselfish person she must be to be the only person in 5 million in the bone marrow registry in the U.S. to give someone like Todd a chance at life and for us as a family to have a chance to continue our lives on earth together. She would have had to have gone into a clinic and taken shots for several days on the front end to cause her stem cells to proliferate. Then she would have had to spend two days in a clinic for around 8 hours at a time nonstop to have the stem cells extracted using apheresis. You know I just try to think of how I myself could stop my world and give a someone I did not know 2 days of my undivided attention -- and it helps me to realize how big her commitment to Todd has been.
Please join us in our excitement -- as all of you, too, are and have been on Todd's team to support him through all he has been through.
Humbly,
Gail
Thursday, August 26, 2004 3:17 PM CDT Hi!
TODD MOVED INTO DORM YESTERDAY AT SAMFORD. This was a HUGE DAY FOR HIM AND FOR US -- as his ONLY REQUEST to DR. A. in Boston 15 months ago when we had an initial interview was "Can you get me well enough to go to Samford in the fall?" and Dr. A. said he would try his best. I remember looking at Todd on the plane flying home that day and seeing this smile on his face all the way home. Yesterday, I saw this HUGE smile on his face.
Thanks be to God and His people (each and every one of you)for all the prayers and support to get Todd to this day. I ran into a church member at the voting poll a couple of days ago and he asked, "How's Todd?" I gave him a good report and thanked him for all he and his family have done for us over the past 4 plus years. He said, "Well, we're going to just keep praying for Todd -- we've been praying for him every day for so long -- it has become a habit!"
We are still praying, too, for him as every day that goes well is essentially time on his side. We pray that the graft vs. host stays under control and he remains healthy. I pray that God will use him in others' lives -- as he has used him in mine. I found a note in Todd's room this morning where he had mapped out what a college experience can do for one' mind, body and spirit -- which tells me he is going forward and not stopping.
My heart overflows with gratitude as I flash back to so many hands and voices reaching out to Todd and the rest of us. Sometimes I just stop and relive the moments. I am not the same as I started this journey with Todd as I have experienced the hand and voice of God thru all of you with such love and understanding.
So from here we continue walking to beat leukemia. I did another half marathon (13 miles) last Friday and we are scheduled to do 17 miles this Saturday within 5 hours. The coach says all 3 or us are doing well. We will walk right at 100 miles in doing long walks over the next 6 Saturdays. Our fund raising is basically done -- and we thank each of you for supporting us in such a big way. We are continuing the process of getting out our formal thank yous -- so please accept this as a placeholder 'thank you' in the interim.
I start teaching the "Agape Girls" again this Sunday teamed up with Sally McC. How special.
Agape,
Gail
Thursday, August 5, 2004 10:24 AM CDT Hi!
We went to Boston on Monday and returned late yesterday. Here's the report (hint -- all great news!):
o Basic counts were strong
o Liver related counts: 1 improved significantly since trip up in early June, one improved marginally and one plateaued -- so good steady progress
o He received 7 baby shots to begin rebuilding his immune system and will get another booster round here in October
o Prednizone was cut in half down to 10 mg/day and other meds left 'as is' for now
o Next blood count read will be here in 3 months
o Next scheduled follow up visit is in 6 months in Boston
o Todd is beginning the process to see if he can meet his donor which we refer to as "Hope" and who was the one in 5 million that was a 12 out of 12 perfect match. We were told that some donors release their identity to the recipient and some who remain anonymous. Todd, and we, respect her wishes and are eternally grateful for her gift to him. He wrote her a letter and thanked her for her gift of life to save his and enable his own life to be leveraged to make a positive contribution to others. He could not give his name, of course, but at a minimum she will have that note to know how much he appreciates what she has done.
Dr. A has given an official ok for Todd to get his life back to normal -- which includes:
o Getting to start college at Samford at the end of this month where he will be majoring in pre-med and will be able to live on campus (but Todd has indicated mom and dad get home laundry privileges -- believe me this will be a privilege to get to do his laundry includig ironing!)
o Getting to go back in public buildings including going to church, movies, stores, restaurants, etc., as well as being on mass transit including traveling in commercial planes (which we did on the way back)
o Getting to enjoy sports like shooting skeet, hunting and fishing (as long as sun screen is applied)-- as well as continue golf. They even agreed he could play paintball (platelets are high enough).
o Eat and drink anything that's legal except for raw shellfish, sushi, grapefruit juice (which impairs anti-rejection drug), etc., -- but just be cautious about food preparation and presentation (deli stle, salad bars, etc.).
o He is even free to do some lite yardwork (raking leaves -- but Richard and I are a bit nervous on that one -- so Todd's probably off the hook on that one.)
o He can work on a Habitat house which is new construction, but should not tear down any old construction
o He will need to take precaution being in environments around small children which could potentially create an exposure to chicken pox and/or mumps/measles/rubella.
Late yesterday we went directly from the airport to Wednesday night church fellowship. Our pastor, Barry Howard, had called and asked for Todd to speak if the timing worked out and he felt up to it. I cannot tell you how wonderful it was to walk thru the doors and have all the church members there give Todd a standing ovation. He then spoke and first was so thankful for all the thousands and thousands of prayers not only this past year but for all of these 4 years that he has battled leukemia. He was thankful for all that had been done for him and his family. He then described how during this time -- especially in the last year while his body was being rebuilt, that he also used it to strengthen his spirituality and his mind. He talked about some tough times, but he also talked about how that morning he went back to the intensive care stem cell unit in Boston to visit the doctor and nurses who were onsite everyday getting him thru this. Nobody recognized him (as now he has hair and is about 40 pounds lighter) until he said a few words in his southern accent! Included were Dr. L., and Gina (his in-charge nurse who has tracked his progress on the web) and Norrie and so many others. His social worker, Amy, asked if he could put on a mask and gloves and share with another patient who was gearing up via chemo rounds and radiation to go thru a transplant. I could tell just how meaningful it was for Todd to share and give back. DFCI said they may want to ask him on occasion to share via phone to help other patients in the future.
He did admit to the church fellowship that he is a huge Red Sox fan and he was upset that Nomar Garciaparra was traded to the Chicago Cubs because Todd had bought a Nomar #5 Red Sox T-Shirt right before he went into the stem cell unit for a transplant! His first store visit was to purchase a Ted Williams Boston T-Shirt.
Monday, July 12, 2004 12:43 AM CDT Hi! +338 Days Post Transplant
Things going well. We got Todd's monthly counts last week:
White 7.5 (Normal 4.0-10.5)
Red 4.2 (Normal 4.1 - 5.6)
Hemoglobin 13.8 (Normal 12.5-17.0)
Hematocrit 41.2 (Normal 36.0-50.0)
Platelets 182 (Normal 140-415)
Regarding liver related counts, he had strong improvement in 2 major ones which was encouraging while the 3rd plateaued, so one now is "only" 4 times as high as it should be and the other is down to about twice as high as it should be -- but we are so, so thankful for the progress and hopefully he is still getting the benefit of the graft vs. leukemia effect. His doctor said this is usually treatable and often curable -- but takes time....so we know what to pray for....including no leukemia.
Todd is still hitting golf balls -- and now has added actually breaking a grafite shaft on one of his woods when he slugged a golf ball last Friday at the range. I was there and the head of his golf club went zooming further than I can hit many golf balls! He has really had to be careful as there is a fine for hitting them too far and over the net backstop -- which he has done on multiple occasions. You know -- I'd be proud to pay the fine -- but don't tell Todd! It's a joy to watch him....and a blessing.
I give a speech about leukemia to The Leukemia and Lymphoma Society Team In Training tomorrow (i.e., the marathon runners and walkers as well as the Tri-Athletes and coaches). It has caused me to reflect on the last 4 years and wonder what key messages I could give others. I have a tape of Todd giving a speech which I will show which will carry the load. He basically said:
o Be ready to deal with whatever life brings (with a subset being "have your faith in God in order" to give you the strength to handle it)
o Have a great attitude
o If you have someone you know in the hospital dealing with leukemia, send them some food because the hospital food is awful!
Regarding Team in Training, we are 95% of our fund raising goal -- which is so super -- and Sandra, Amy and I are so thrilled and appreciate your support. If you still would like to participate just contact any of us. We all walked about 8 to 9 miles (about 1/3 of a marathon) this weekend pretty much at race pace and was it HOT! Next weekend we do 11 miles (42% of marathon distance). In the interim, we will be working on building speed as well as going up and down hills.
We also made good progress on logistics to enter Samford this fall regarding his room, I.D., and other items. Since he can't technically be in a building yet, we are piecing this together, but it's working.
I began today gearing up to return to Boston in early August. Last week we pretty much finalized with his doctor in Boston which 'baby shots' he should/could receive. We are up to 8 different kinds and holding for now. We have also mapped out a gameplan here to get another round in October.
Todd is scheduled to be able to be back in public buildings in about 3 weeks after the immunizations in Boston.
I hope and pray that you, too, are having things 'normal' in life -- even though I don't quite know what that means anymore. I think I have become so much more 'incrementally thankful to God' for each and every day....as well as realize I have so little control over tomorrows which I used to think I did.
Take care,
Agape,
Gail
Friday, July 2, 2004 8:49 AM CDT Happy 4th of July Weekend!
Hope this is a wonderful time with family for all of you. Time to hit the pause button of life and just appreciate what we have -- freedom and so many other blessings.
Todd Update:
Todd doing well. I asked him what public buildings he would like to go into when he gets cleared. He mentioned getting to go to church will be so nice to be able to do and to be able to go to a movie.
Leukemia and Lymphoma Society Team-In-Training Update:
I walked 9 miles last Saturday (the routine called for 7 miles -- and I held up well enough to do a couple more). It felt great to be able to do 1/3 of a marathon. Richard walked with me and did great -- we teamed up as he and I are going to probably go and do a half marathon held in Boston in September for Dana-Farber's Jimmy Fund -- which also benefitted Todd.
Combined fund raising for Sandra, Amy and I is currently at 85 f goal.
Special Prayer Request:
Please add Phyllis Holland to your prayer list. She is the mom of a fellow AmSouth employee (www.caringbridge.org/al/phyllisholland) who has both ALL and AML leukemia and is gearing up for a bone marrow transplant.
Please pray for Danny @ Children's -- a friend of Todd's who had his tranplant last December and has been in ICU.
Little Samantha (www.caringbridge.org/ga/samantha)is continuing to be so brave -- please pray that any complications bubbling up simmer back down so she can continue to make forward progress. Her mom has found this so stressful being on a roller coaster.
We pray that Ralph Cook tolerates the chemo going forward to enable him to get into remission and go forward (www.caringbridge.org/al/ralphcook).
The list goes on......that's why I'm walking.
Agape,
Gail
Wednesday, June 23, 2004 10:35 AM CDT Hi!
Todd doing well.
Orders from his doctor in Boston came in to actually go to monthly blood count checks via home health nurse in lieu of every other week....so we take that as confirmation that things are going pretty well in spite of the graft vs. host.
We begin paperwork in August (sign releases) to hopefully this fall get to meet "Hope" (our nickname for the 26 year old girl who donated her stem cells to Todd to give him life)-- she is the only one in 5 million in the National Donor Registry that matched him. What a gift! I think of her often as I see Todd just sit and smile and laugh and talk and walk and go and do. I am so, so thankful. Father's Day was so special this past weekend. He joked with Richard. The bond they have out of all of this is so neat. He has taken such good care of Todd both while we were both in Boston and while I was here with Regan and working on the house earlier this year.
This week Richard and I began the registration/orientation process for entering Samford this fall. Todd will actually do a late orientation right before school because he cannot enter a building yet. The administration at SU has been so wonderful to us.
This morning I heard a noise right before I left for work that sounded like the washing machine was out of balance. I was about to make a dash downstairs when all of a sudden I heard something that sounded like cymbals crashing. It dawned on me that it was Todd playing his drums at 8 a.m. in the morning in the basement. He said he was 'practicing getting up early for 8 a.m. classes at SU"! Needless to say, that music was a blessing!
Marathon Update:
Sandra N., Amy R. and I each walked 7 miles last Saturday with our coach. We walk another 7 this Saturday and then ramp up to 9 the week after (1/3 of a marathon!). Our combined fund raising effort is 80 here -- so that is going extremely well, too. Thanks so much to all our supporters -- you have been so generous. We will be formally thanking you, but please accept this as our 'interim appreciation'. Why the balloons? We must finish the actual marathon in San Francisco within 8 hours (averaging 18 minutes per mile or better). There is a "Balloon Lady" who walks at that pace and if she passes you, you get loaded up in a bus and hauled in. My goal -- to walk faster than the Balloon Lady!
Agape,
Gail
Wednesday, June 9, 2004 1:59 PM CDT Hi!
Hope all of you are enjoying the summer.
Here's the latest:
o Just got confirmation yesterday from Todd's doctor @ DFCI that the liver biopsy slides indicate Todd does have mild graft vs. host as it relates to the liver. This means the new donor cells and his existing cells are not getting along perfectly -- but so far prednizone and Prograf are keeping things under control. His doctor is not worried about it right now....so I'm not either. Todd hit 175 golf balls at the driving range yesterday and says he feels fine.
o The good news is that this should not hold him back from going to Samford this fall.
o We will go back to Boston early August for another checkup and clearance for Todd to be able to go into public buildings plus begin getting his 'baby shots'. He still cannot be around small children in the interim.
I am just so thankful to have each day -- it is a true gift.
Marathon Training Update:
o Walked with my fellow team mates Sandra N. and Amy R. and coach Diane B. for 6 miles Saturday -- and felt like 7 or 8 was the art of the possible. We repeat the 6 mile round this Saturday.
o Fund raising is going well. We really appreciate all the support we are getting.
Additional Hugs and Prayers:
--We have had yet another diagnosis of leukemia (ALL) in our community last month -- little Ralph -- (www.caringbridge.org/al/ralphcook) -- we pray that the test this week confirms he is in remission and can continue treatments
--Praise for little Margaret Ann who lives in our community (www.caringbridge.org/al/maclark) who passed the 1 year mark last month since beginning treatment for leukemia (ALL)
-- Also we are so glad little Sean Fredella who also lives in our community and is doing well after beginning treatment for leukemia (ALL) over a year ago
-- We continue to honor a request for prayers for little Samantha who is here from Georgia in the hospital recovering from graft vs. host following her transplant earlier this year related to leukemia (www.caringbridge.org/ga/samantha)
-- We are so,so thankful that Taylor Watts is doing well after transplant and addition treatment at Sloan Kettering.
-- I continue to keep up with Reagan K. -- whose mom and I compare notes on occasion -- as he continues to log the weeks and months post transplant and plays soccer like any 10 year old.
--Also, a special request to be with Kevin Collins and his children (who live in our community) as he lost his wife, Claire, to leukemia (ALL), a year ago.
--Please be with Austin's Mom Tina B. who lost Austin to leukemia (AML) a year ago last Sunday (www.caringbridge.org/al/austin). A visit to Austin's website will explain why I'm . . . . .
Walking and Praying for the big Cure,
Gail
Thursday, May 27, 2004 8:29 AM CDT Good morning!
Hope all of you had a blessed and safe Memorial Day weekend. We certainly did.
Yesterday we (all 4 of us) did a scheduled round trip to Boston for Todd's routine appontment at DFCI with Dr. A. This was possible due to my cousin continuing to provide us transportation which has made this so feasible as we are ironically just 2 1/2 hours from Boston by direct flight plus since Todd cannot fly commercial or be in public buildings per his doctor -- it has been a necessity. All went well -- he said Todd definitely needed to have the gallbladder removed a couple of weeks ago. Liver counts are still elevated with only one of the 3 showing a little improvement but the overall trend is good from when they flared up last February. There is still a detailed review underway at Brigham & Women's Hospital of the actual slides taken from the liver biopsy to get a read on graft vs. host, etc.....so meds (anti-rejection drug Prograf and steriod prednizone were left 'as is' for now), but no cause for alarm -- just staying ahead of the curve is so important. There is also a "graft vs. leukemia" effect which can be a good thing if the new cells are killing off any remaining leukemic cells. We also got to see Toni and social worker Amy -- it was great to trade hugs.
Leukemia-Lymphoma Society Marathon Training Update:
o Walked 5 miles with coach last Saturday -- which was my goal. It felt great to be 20 he way. More formal training begins next Saturday when we do 6 miles.
Isaiah 40:28-31
Agape,
gail
Monday, May 24, 2004 10:23 AM CDT Hi!
Gallbladder out!
All went well at St. Vincent's and we should get pathology report today plus counts will be checked and reviewed tomorrow.
Todd doing well -- moving a bit slow, sleeping a good bit -- but ate Jim N' Nick's Bar-B-Q Saturday and drove his vehicle on Sunday a.m.
Please include in your prayers a couple of special requests:
Ralph C. -- a 5 year old ALL leukemia patient who lives near us and was recently diagnosed within the past month and is struggling with initial phase of treatment
Samatha R. -- (www.caringbridge.org/ga/samantha) whose mom emailed me late last week. Samantha is almost 2 years old and is struggling with graft vs. host side effects from the transplant
Marathon Update: Walked 4 miles with coach on Saturday and should ramp up to 6 miles within 1 to 2 weeks. Fundraising letters to benefit Leukemia-Lymphoma Society in the form of research dollars and family assistance will go out within a week. Please consider this cause among the many needs I know you all get asked to support.
Walking and Praying and Praying and Walking,
Agape,
gail
Wednesday, May 19, 2004 11:03 AM CDT Hi!
Todd to have gallbladder surgery probably within the next few days -- but should be no big deal. Recent sonogram and CAT scan indicate gallstones are there which were probably caused by the TPN (the liquid nutrition that bypasses the stomach he needed received while in Stem Cell ICU). The gallbladder evidently during this time just sort of 'hits the pause button'(which was about 30 days) and this can result. Todd is not worried....and if everything goes well, he should be back out of the hospital within a day. Also, it MAY be the cause of the remaining liver counts not coming on down within a normal range. His doctor in Boston wanted to go ahead with this before anything became a problem.
Continuing to be thankful for small speedbumps --
Agape,
gail
Thursday, May 13, 2004 1:00 PM CDT Update:
Todd's counts came in and overall basic counts remain good, one liver related count came down to the high end of the tolerable range and 2 other liver related counts at somewhat higher than normal levels....but not alarming. His doctor in Boston has asked for a precautionary abdominal sonogram to be done which will be done tomorrow morning at St. Vincent's (Thank you Dr. Randy N.!). Since technically he cannot be in a public building, they have booked him first and he'll be able to wear a mask and gloves during the test. Results will be faxed to Boston for review.
Tuesday, May 11, 2004 12:35 AM CDT
Hi!
Mother's Day was special -- May 9 -- It was exactly a year ago when Todd was diagnosed as having relapsed....Todd gave me a special thank you card for helping him get well. Richard and Regan also made the day feel so special.
One of many lessons I have learned -- To seize the moments and cherish them -- no matter how trivial.
Examples of "seizing the moments":
#1:
One day last week, Todd helped out by starting the diswasher. He discovered I was out of Cascade -- so he used the next best thing -- dishwashING liquid (not dishwashER). Meanwhile, Regan had been making a pitcher of official "Spanish Smoothies" -- a required assignment for Spanish Class the next day which called for $15 of papayas, mangoes, etc., and made my kitchen look like a Jack LaLane Infomercial for a Fruit Juicer. I hear this grinding in the kitchen (which did not sound like the blender) and then Todd and Regan yelling "Oh, no!" -- as suds were spilling out all over the floor out of the dishwasher! Richard is muttering "I need a traveling job -- or at least I need to move to the basement." I said, "OK -- family moment here -- nobody gets upset -- and we all get to laugh and remember this forever!" And so we did.
#2:
I have missed teaching the "Agape Girls" at church since having to leave all of a sudden last May. This Sunday, Sandra N. asked if I were available to teach 6th grade next fall -- and I said "Yes!" The great news is that we will also probably have some of the boys that I got to substitute teach a couple of weeks ago.
Todd's Sunday school teachers continue to accommodate his not being able to be in a building and are teaching the college kids outside.
This past Wednesday was also special as Richard, Todd and I met with Dr. Howell outside and mapped out Todd's fall college class schedule.
Update: I am formally training for the Leukemia and Lymphoma Society Marathon Walk in October in San Francisco. So far I have averaged walking 3 miles per day for the past 3 days. My goal is to be able to walk 26.2 miles per week -- then figure out how to do this all at once within an 8 hour window of time by this fall (that's why the 'turtle logo' has appeared on this page -- it's a picture of me walking!). Sandra N. and Amy R. are teaming up with me.
Seizing the moments --
Agape --
gail
Tuesday, May 11, 2004 12:35 AM CDT Hi!
Mother's Day was special -- May 9 -- It was exactly a year ago when Todd was diagnosed as having relapsed.
One of many lessons I have learned -- To seize the moments and cherish them -- no matter how trivial.
Example of "seizing the moments":
One day last week, Todd helped by starting the diswasher. He discovered I was out of Cascade -- so he used the next best thing -- dishwashING liquid (not dishwashER). Meanwhile, Regan had been making a pitcher of official "Spanish Smoothies" -- a required assignment for Spanish Class the next day which called for $15 of papayas, mangoes, etc., and made my kitchen look like a Jack LaLane Infomercial for a Fruit Juicer you can mail order. I hear this grinding in the kitchen and then he and Regan saying "Oh, no!" -- as suds were spilling out all over the floor! Richard is muttering "I need a traveling job -- or at least I need to move to the basement." I said, "OK -- family moment here -- nobody gets upset -- and we all laugh and remember this forever!"
Tuesday, May 4, 2004 10:06 AM CDT Hi!
Todd Update:
We got Todd's counts last week and all still looks well. Good progress on liver related counts -- all 3 improved from a couple of weeks ago anywhere from 10o 18 Basic counts remained 'in the middle of the road.' We will meet with his advisor at Samford this week to map out the fall class schedule -- we will actually meet outside at a restaurant nearby since Todd cannot be inside a building until August.
Corporate Angel Network:
We have been so fortunate to have transportation provided thru family for the commutes to and from Boston which have been so vital, but I wanted to let you know (in case you know of others that this might help) that two weeks ago we intentionally had Todd and Richard use a flight service for cancer patients who commute out of state for appointments. A while back I accidentally bumped into this service on another leukemia patient's website and wanted to do our part in relaying the information. It is called Corporate Angel Network (website: www.corpangelnetwork.org ; Phone: 914-328-1313 or email info@corpangelnetwork.org). Corporate Angel Network is a charitable organization whose mission is to ease the emotional stress, physical discomfort and financial burden of travel for cancer patients by arranging free flights to treatment centers, using empty seats on corporate aircraft flying on routine business. Based in White Plains, NY, there are 50 part-time volunteers and 5 paid staff who work with patients, physicians, corporations, flight departments and leading treatment facilities to arrange 1,200 flights a year. The program is open to all cancer patients, bone marrow donors, and bone marrow recipients who are ambulatory and not in need of medical support while traveling. Eligibility is not based on financial need, and patients may travel as often as necessary. 500 of America’s top corporations participate and it has coordinated more than 14,000 flights since it’s founding in 1981. In our case, Richard and Todd had a flight that left White Plains and flew to Nashville -- which was very doable. The folks operating the service were so helpful and responsive to Todd's requirements.
Marathon Update:
Last Saturday Sandra N. and I formally started training for walking in the Leukemia-Lymphona Society's 26.2 mile marathon in San Francisco this fall. We met with our walking coach, Dianne B., (who has done this numerous times)
and our team captain is a veteran, Mollie B. You'll hear more. I thought 26.2 miles was alot -- but I also learned that we will be walking as much as 600 miles between now and the marathon as part of the training -- it sure makes 26.2 miles sound like a much shorter distance! We'll keep you posted. Amy R. is also probably going to team up with us, too -- which will be great -- as she has done a 1/2 marathon before.
Continuing Thanks--
So where am I with God these days? Each day for me now has a 'life' of its own -- a beginning, a middle and an end. I shared with someone recently that I live more for the day and what I have done in God's name to make it worth it for Him having me here and I feel much, much more accountable on a 'day by day basis.' I cherish each day with my family -- each day seems like a blessing and a miracle. I don't want to take it for granted. I continue to be thankful for each and every one of you who have been and continue with us on this journey.
In Sympathy
Please share with us in sympathy for Rachel Green's family (www.weloverachel.com). Rachel lost her battle with leukemia earlier today. This is why I'm doing a marathon....My husband Richard was scheduled to give platelets for Rachel today....If you would like to see why another mom runs, please go to the site: www.caringbridge.org/al/janiesims....
gail
Wednesday, April 21, 2004 2:47 PM CDT Hi!
Just heard from Richard that Todd's appointment with Dr. A. went great in Boston at Dana-Farber Cancer Institute/Brigham and Women's.
His next appointment in Boston is in early June. He gets to skip going up in July and then goes back in August to begin immunizations (i.e., begin geting his 'baby shots' because the chemo and radiation required prior to the stem cell transplant wiped out the immunity he had from the original rounds). He'll still need to go by private jet, since he cannot yet fly commercial. He'll still get counts checked here every 2 weeks by a home health nurse and get results faxed to Boston and Children's Hospital here for review.
Todd can now take golf lessons and play 9 holes later in the day. He just needs to be sure he's not around grass being mowed...and keep as many shots as possible in the fairway so as to avoid going into the woods near trees, etc. He received a great set of golf clubs as his Magic Moments wish at Children's Hospital here in Birmingham -- so they will now be getting put to use.
I am numb. Never on my prayer list was for Todd to play golf....I had other priorities -- seeing him serve God, go to church, go to college, have fun with friends....and ensure there were no more bad cells. Obviously, Todd has had his own wish list in his conversations with God that included a few things mine did not.
Speaking of church -- it is ironic that Todd can get out on a golf course, but not be inside a church building -- but his wonderful BBC Sunday School teachers -- Don, Lori, Terrell and Mac -- beginning next Sunday are going to have Sunday School outside so he can attend. What a blessing! I guess Jesus taught alot of Sunday school lessons outside come to think of it.
Next....Relay for Life
Richard, Regan and I attended the Relay for Life Survivors Dinner at MBHS last Friday and walked the family lap, saw and hugged friends. Todd lagged back at home and later came up after midnight (after the crowd had dwindled) to meet with 3 of the MBHS teachers who were still there chaperoning -- and who had helped him -- along with many, many others at MBHS beyond the call of duty) to get him thru MBHS with a 3.6 GPA while on chemo his junior and senior years.
While at Relay for Life, I saw the word HOPE spelled out with luminaires in the bleachers by the track -- HOPE is the nickname we have for Todd's donor who we have not met yet and we are not allowed to know her real name. After the field lights were shut off, the only light was from the luminaires spelling HOPE and from the quarter mile of luminaires around the track in honor of and in memory of so many. In the candlelight as I joined in the lap around the track, I cried as I walked and walked as I cried. My tears were not only out of thanks for Todd and others we know who are adding day-by-day to the consecutive months or years in remission, but I was crying and hurting so badly for others who I have known and cannot today enjoy their hugs -- including my dad, Richard's dad, Chip, Austin, Claire, Gina, Deanna, Janie, Marissa and Ethel.
Ethel and I had a ritual of trading hugs at Relay for Life and catching up on life in general over the past 3 years. I want to share about Ethel. Her only daughter was diagnosed with leukemia a few months after Todd's original diagnosis -- while she herself was battling cancer. As her daughter lost the battle, she asked our mutual social worker at Children's to call me and let me know. Why? Because she was so concerned about Todd and Regan and wanted them to know while at home so they could cry their tears privately instead of hearing about it the next morning at church. How did this mother manage to think about my children while losing her only child and while in the midst of fighting cancer herself. Her unselfishness raised the bar for me in my own life. I saw her husband Mickey last Friday at Relay and got my hug. I shared these thoughts with Todd later including getting to see Mickey -- and he said, "Mickey too is a Cancer Survivor."
walking in HOPE,
gail
Thursday, April 15, 2004 5:15 PM CDT Hi!
Just got word back from Todd's doctor in Boston that the basic counts are "magnificent" and regarding liver related counts he wants to hold the course we are on for now.
Specifically:
White Cell Count 9.2 (Normal 4.0-10.5)
Hematocrit 43.0 (Normal 36.0 - 50.0)
Platelets 166 (Normal 140 - 415)
Todd will return to Boston soon for a regular checkup onsite.
He did get to go to Sunday School at BBC outside and see his friends and teachers last Sunday. It was special.
He and I walked 3 miles last night to 'jump start' my leukemia marathon training. It is really something to have him as my hero and my coach as I get into this. I told him that based on HOW LONG it took me to go 3 miles that it would probably take me OVER 24 HOURS to do 26.2 miles! I better take a flashlight to San Francisco! He kept saying -"Don't worry Mom -- you'll get faster."
Not worrying/walking faster ----
gail
Saturday, April 10, 2004 11:44 PM CDT Happy Easter!
Todd's birthday is Easter Sunday this year -- and he feels it is so extra special this year to celebrate his new life on this special day. He asked for a big cookie cake with "Welcome Home and Happy Birthday Todd" written on it -- so Regan and I handled that this afternoon. I felt a bit like my old self recently as I picked out a humorous Easter card for my mom and got Richard and Regan to surprise her by putting a fake baby chick sitting in a nest of Easter grass in her mailbox this morning. She called me right after she found it laughing -- it felt so good to just laugh. Our friend Lynne O. called today and told us about an early morning outside service at a nearby church that Todd could go to -- so he and Regan will attend that while Richard and I gear up for Sunday School and Church later on in the a.m. It was so neat to see Todd go pick out a shirt, tie and pants and shoes to dress up to go to church. He has not been able to go since he cannot go into buildings yet. Recently he managed to go shopping by knocking on store windows early in the a.m. and getting store personnel to bring merchandise outside for him to see and pick out.
Earlier this week Todd and I had lunch with Mary and Gloria at BCBS who have been our "insurance earth angels" every step of the way for the past 4 years with Mary with Gloria also teaming up with us about a year ago due to the transplant. They have been so, so helpful on all fronts -- knowing just when to call me -- and staying ahead of me every step of the way. It was fun to get to see them because all of us had just been phone voices and emails to each other until then.
Todd's counts will be checked on Monday and I should get a fax on Tuesday.
Well -- this Easter Bunny had better sign off -- it's a bit late and the baskets are waiting....but Todd just walked in to tell me that it is officially his birthday since it is now after midnight.
But before I go, remember the Passion of Christ and the true unconditional (agape) love that He has for all of us. Yes, I saw the Mel Gibson movie last week with Richard and yes, I cried a sinner's tears....
Please remember the families that are all so dear to us that have had children with leukemia and other forms of cancer. This week I signed up to train over the next 5 months to do a marathon (26.2 miles) in San Francisco this fall for the leukemia-lymphoma society....so if you see me trucking along on these new sidewalks in M.B. -- you'll know why!
Agape,
gail
Friday, April 2, 2004 12:36 AM CST Hi!
Todd's counts were done this week by CORAM by Beverly coming to the house and taking samples to a local B'ham lab to avoid his having to go into clinic or pediatrician's office since his doctor really does not want him in buildings at all. The counts were reviewed this week by Dr. Antin and Toni, Todd's nurse, at DFCI in Boston and looked strong including:
White Blood Cells 7.3
Hemoglobin 14.6
Hematicrit 41.5
Platelets 170
This was reassuring since he had changed environments 2 weeks ago after being in Boston for 8 months.
He is driving, getting outside -- walking at the Summit, and smiling. He laughingly said this morning that moving the clocks up an hour this weekend really want interfere with his schedule!
I am still numb and continue flashing back to all he has been through in the last 4 years including this last year -- and see the faces and hear the voices of others who have been on the front line with us. Alot of you have lifted us up and have tracked us via the website -- every day I seem to know more of your names and faces....and meet more people who have been in prayer for Todd. I was literally standing in line at breakfast this morning and coincidentally someone I had never known before introduced herself and had prayed for Todd thru a mutual friend's church/Bible study in Bluff Park.
Todd recently visited outside with a friend who stopped by the house. The friend had made some poor choices in life. I remembered EXACTLY the last time the friend stopped by in the driveway -- 5/9/03 and I saw Todd try and convince the friend to keep his life in the middle of the road -- with Todd himself not knowing that while he was doing this, his own life was about to stand still as 2 hours later he would be diagnosed as having relapsed with leukemia as I rushed him to the emergency room @ Children's. Todd offered this week to talk to the friend about getting God involved in his life if he was ever interested. I think I know why I feel like sometimes God tells me to just go sit down and be a second string benchwarmer while he and Todd handle things.
I hurt deeply every day for all the families that leukemia and other forms of cancer has stricken and caused the loss of children, mom, dads, friends -- I feel a permanent bond with all of these families as I take each step forward.
Cindy W. told me the welcome home a couple of weeks was for Todd and the whole family, but also that she especially wanted Richard and I to feel the love --
Feeling loved and on the bench,
gail
Monday, March 29, 2004 2:31 PM CST Hi!
Checking in --
Todd doing great. Blood counts will be checked either tomorrow or Wednesday by home health care and faxed to Dana-Farber in Boston and to Children's here.
He has been in contact with friends and just glad to be able to be back home.
We thank you for continuing prayers. We personally are praying that all the bad leukemic cells are gone and he can go forward with life. He has expressed that he cannot have worry in his life. The way he talks about it, it is like seeing the 23rd Psalm in living color on the homefront as he goes thru the day.
Agape,
gail
Thursday, March 18, 2004 2:18 p.m. CST TODD IS BACK!
We were able to fly home yesterday leaving about 7 inches of beautiful snow and 24 degrees F. in Boston and arrived in Birmingham around 2:30 p.m. with the temperature in the 70's and sunny. My cousin John and wife Regina greeted us (thank you so much for everything you did to get us there and get us home!) along with Jim and Lynn O. who had been taking care of Regan (including getting her to school at 7 a.m. to make up exams). I'll admit to tears of happiness. Some elves had managed to decorate all the vehicles with funny/clever messages and streamers to welcome Todd home and form a colorful caravan. When we got to the I-459 exit, we found church staff and friends waving and yelling to Todd with signs and balloons -- and then followed a trail of more signs and more balloons welcoming Todd all the way to our house. At our house there must have been at least 30 or more folks lining the street and our driveway -- along with more signs and more balloons! (A little bird told me that Cindy W. had alot to do with coordinating all those signs and balloons!) Todd felt the love and care and joy -- as did we all. We made and got pictures back yesterday and made some more pictures this morning. It was great because outside he did not have to wear a mask and gloves and could talk easily at a safe distance. Later he drove my car (with me riding shotgun -- so I could run in the drugstore and get him some #48 sunscreen!). Later he went out again (in my car) to see a few friends (again -- outside and at a safe distance).
He woke up this morning (temperature normal) ready to start the day with a big "Todd smile." It has been 8 months since he has been home. It is without a doubt a huge blessing. He looked at his high school senior picture framed in the den and said, "I'm not the same person that is in that picture...." and I'm not the same mom who was the mom of the boy in that picture. We as a family and as individuals have grown in our faith and grown in our love of God. But I personally still have a long way to go to get to where you all are who have lifted us up in prayer and supported us in so many, many ways. I stand in awe of God and all of you as his children.
Mom Still in training --
Agape,
gail
Wednesday, March 17, 2004 5:53 AM CST
Greetings from Boston!
We are on the countdown to come home -- here's the latest:
o Todd's appointment yesterday with Dr. A, Toni -- his nurse, Amy (social worker), and Suzanne (dietician all went well). Overall counts are super with liver counts generally improved and the doctor reduced the meds related to treating his liver counts. He was cleared to come home today and is he EVER excited -- grinning from ear to ear!
o We are on standby to fly home at the moment -- given that we got about 5-6 inches of snow overnight here and we'll have to see if we can leave today or if we need to wait until tomorrow. To greet Todd at home I called "Flamingo A Friend" yesterday (per P. Brashier's recommendation) and a couple of dozen penguins will be put in our yard (in my flower bed of white pansies to resemble snow) to welcome Todd home along with a big welcome home sign. The business owner wants to put a picture of it on his website.
o Richard greeted me this morning with a GREEN Bagel for breakfast this a.m. since it is St. Patrick's Day.
REFLECTION
o Being around Todd has been amazing to see how his faith in God just flows as he talks. He has journaled some of it, but there is so much more that just naturally comes seamlessly in his conversation. I asked him if he would grant me permission to share with our Caring Bridge readers what I shared with our church family a few weeks ago when asked one Sunday morning to give about a 5 minute testimony about our journey with Todd (without hesitation he humbly agreed). Following is what I shared which Todd had written on the back of an out of date pizza coupon -- which is a conversation with God that Todd had documented during his journey to beat leukemia:
"I want you to follow me.
I want you to obey me.
I want you to love me.
I love you."
-- God
"I want to love you.
Show me and I will follow
and I will obey."
-- Todd
"Let the scriptures come alive
in your life."
-- God
"Life isn't about what you do
and don't do, it's deeper.
It's about me."
-- God
"Lord bless my body to your will,
bless my life to reflect your will,
bless my mind to see your vision and
Bless my soul to keep you as my God."
-- Todd 2/11/02
When you have a child who has experienced going to the edge of life and in so doing experiences God in a way beyond what someone such as me has experienced as his mom, it causes me to ask within my own journey if I have developed as deep a relationship with God as my own son has. Early on in this journey I prayed and acknowledged (complete with tears) that Todd is God's son and I am very far down the organization chart in terms of my "rights" as a parent. I prayed that I would not insert myself between my children and their own personal relationship with God so that they might flourish directly under His hand.
May God Bless you! Thank you for your continuing prayers. Please join us in pausing to thank God for His love.
Monday, March 8, 2004 10:28 AM CST Hi!
Here's the update (to God be the Glory!!!!!!!!!!!!!!!):
o Todd gets to come home mid-March!
o If all stays well -- he can attend Samford this fall! . . . and live on campus. His one request of his doctor last June was to get him well so he could attend Samford this fall.
o He will have monthly visits back to see Dr. A. and Toni thru August every 4-6 weeks after which he will have appointments every 6 months thereafter. We will also coordinate with Children's Hospital here.
o He will commute via private aircraft thru August.
In the interim thru August:
o He does not have to wear a mask and gloves outside if he keeps a reasonable distance from folks.
o He can have a few visitors (2 max at a time)in our home (with visitors wearing masks and gloves) as long as they are well (no sniffles or sore throat, etc. as masks are not totally effective per his nurse).
o All 'home type cooking' will have to be done in our home.
o He cannot go into public buildings (no movies, restaurants,....and even church) -- but he will be able to OCCASIONALLY eat outdoors at a few selected restaurants (depending on type of food preparation, health rating, etc.) at non-busy times -- so watch out for him outside at Barnes and Noble, Johnny Rockets, The Cheesecake Factory (like when are they NOT busy!), et al.
o He can also have a few visitors on our back screened porch as long as no one is sick.
o He can drive (without a mask)...and his Yukon is ready to go!
o In the interim our home has been (or is being) ramped up to meet the specs for Todd -- including new windows, 3 new electro static filters, 2 more Ionic Breezes, 2 and 1/2 bathrooms redone, carpets freshly cleaned or replaced, walls and wood and tile floors disinfected, new airtight front door, all drains cloroxed weekly, etc. -- PLUS a new TV for video games and movies (yes, I'm a pushover!).
Meanwhile I was @ Children's on Acton Road with Regan until midnight who had 101 degree F. -- being diagnosed with an ear infection and strep throat -- so here we go! She was also tested to ensure she did not have the flu -- given all the symptoms she had....at least we have time for her to get over this now.
I cannot believe that I am granted the privilege to type this report. I thank each and every one of you for every syllable of every prayer and all you have given of yourselves and your entire families (even your children) to help Todd. I love you and am so thankful for you being in our lives -- you are so special!
Monday, February 23, 2004 8:50 AM CST Good a.m.!
Todd doing great:
o Talking to friends via cell and i-m
o Walking as weather permits as much as 4 miles -- he and Richard walked yesterday after it 'warmed up' to 35 degrees F.
Next doctor's appointment is next week on Tuesday 3/2. We continue to pray that the new cells are doing 'their thing'.
I guess as a mom you feel entitled to have 'tears of joy' occasionally. Last Friday I was gearing up to go to Step Sing at Samford with Regan and friends Lynne O. and Leissa W. It dawned on me earlier that afternoon that Todd would have been performing that night -- so I just got my 'rain shower' of private tears over earlier that afternoon....Later that evening we called him at intermission via cell to give him a report on the shows. I have often thought as I have the privilege of having conversations with Todd and Richard that I wish that God would let us have cell phones in heaven.
Speaking of conversations with God, a couple of weeks ago I had another privilege of giving a brief testimony at our church (as somewhat of a proxy for Todd) as he has journied through the battle to beat leukemia including the transplant. It made me stop and think of all the love that all of you have expressed to Todd and the rest of us in so many, many ways. We are so blessed to have you all in our lives. May God Bless You!
Friday, February 13, 2004 12:10 AM CST
"Give thanks to the Lord, for He is good; His love endures forever." Psalm 106:1
Happy Valentines Day!
Well, "the Boston Boys" have been busy including:
o Todd walking 4 miles plus in one outing this week.
o Todd got his port out at Brigham and Women's hospital midweek -- the port has been a good one for about 3 1/2 years, but even "Drano" would not unstop it the last couple of months as it was flushed for maintenance.
o Todd asking to come home in March.
o Paul Basden visited last week for a couple of days (I asked Paul if he could be a Christmas gift for Richard and Todd by lining up a visit.
Todd's next appointment is next Wednesday, February 18. We are praying very hard that he shows no signs of graft vs. host issues and that all counts are strong (with no signs of any leukemic cells) so his doctor and nurse concur that he can come home.
Grace to you!
Agape,
gail
Thursday, February 5, 2004 8:23 AM CST Hi -- The latest update is under 'read journal history'.
Agape,
gail
Thursday, February 5, 2004 8:15 AM CST Checking in (and thank you for keeping up with Todd!):
Todd's appointment on Tuesday 2/3 went well overall - counts were generally good, but there was some evidence based on liver counts that there was some minor graft vs. host occurring. Dr. A. and Toni are not alarmed and view this as potentially a 'good thing' in that they would like to see the new bone marrow cells fight a bit in order to 'seek and destroy' any undesirable remaining cells. Todd was put on some meds to temper the reaction and will go back in for a checkup in a couple of weeks. Please don't be alarmed, but we welcome specific prayers for this to be a 'desirable side effect' of the transplant....and this is why we have not rushed into getting Todd home any sooner -- so we could give some time for the transplant to settle in. Todd has indicated this may push the timetable back for him to come home into April or perhaps May -- we'll let him decide what he wants to do.
Monday, January 26, 2004 11:32 AM CST Good a.m.!
Todd and Richard moved back into the apartment on Saturday....so Todd is back in the internet business. His next appointment is next week on February 3. He is feeling stronger and ready to get home! He walked I think about 2 miles one day last week when there was a break in the weather.
Talked with Brad E.'s grandmother over the weekend and Brad has been moved out of the intensive care stem cell unit to another scaled back unit on the same floor @ Brigham and Women's in Boston -- which is great news!
Continuing to be thankful and prayerful,
gail
Wednesday, January 21, 2004 9:15 AM CST Here's a quick note to supplement the general update below:
Yesterday in Boston our apartment developed a water leak that appears to have originated from a problem 8 floors up!....so Richard and Todd had to evacuate in a hurry because Todd right now cannot be around any construction type projects that could create an environment for mildew, mold, dust, etc. to be distributed in the air. They moved to another unit (which Richard had to scramble and disinfect to Dana-Farber specs). The new unit does not have a telephone so that Todd can log onto the internet -- so last night he said he was so BORED. He said, "Mom, have you ever heard the expression as something being so boring it was like watching paint dry?....well, I'm to the point of being so bored I actually wish I had some wet paint to watch dry right now!" Fortunately, the apartment management are doing everything they can to fix the problem as we speak.
Tuesday, January 20, 2004 11:48 AM CST
Hi!
Todd doing well -- Regan and I made a quick trip up over MLK weekend and checked on the troops. It was COLD -- about 0 degrees F. when we got there and probably close to minus 15 with the chill factor.
Todd is fired up about coming home early March to begin the commuting routine once a month. He and I walked out in the snow when it warmed up to about 25 degrees F. yesterday. He held up well (actually better than me!).
Regan and I went over to the Brigham and Womens intensive care stem cell unit to check on Brad and his grandmother, Pat. Brad asked us to come up and see him. He is off the ventilator and very weak -- but stable.
Well -- stay warm! Weather in Birmingham is also cold right now!
Agape,
gail
Wednesday, January 14, 2004 1:01 PM CST Hi!
Todd (and Coach Richard) doing well in Boston....beginning to count the days until he can get home and then begin commuting occasionally back up to Dana-Farber. Right now the temp is -3 degrees F. and about -23 degrees F. with the chill factor! Todd has been walking outside when there are breaks in the weather when it 'warms up' to about +30 degrees F.
Please pray for Brad who was our 'next door neighbor' on the stem cell transplant unit late last summer and whose grandmother in Maine we stay in touch with a couple of times a week. He has contracted pneumonia and had to re-enter the hospital in Boston, but was taken off the ventilator yesterday. I saw him about 2 weeks ago when he came in to get blood and he was looking well, but had some pain.
Recently one of our local news stations noted a neat website you may want to check out (I did and it really helped me maintain a 'big picture' perspective on life's challenges: www.theinterviewwithgod.com
Agape,
gail
Tuesday, January 6, 2004 10:26 AM CST Just heard from Richard that Todd had a great appointment this morning:
o Counts great
o Meds great (remaining anti-rejection drug reduced significantly and prednizone discontinued)
o Diet great (*Todd also approved to have a hot Subway takeout sandwich -- which he has been craving)
o Day-to-Day routine great (kudos also to Coach Richard)
o Priester pecans given to doctor and staff for Christmas reported to be great (We decided to send this specific "Southern food group" as Dr. A. and Toni are still learning about Fed Ex'd Dreamland Ribs -- which they have not put on the approved list yet!)
Last month we got word that Todd is doing great by all transplant standards that they use at DFCI -- BUT it was also reinforced for Todd and the rest of us to not drop our guard as we go forward -- and still obey the rules -- which we are quick to get clarified as questions come up on where to draw the line under specific circumstances.
So many, many prayers (including many, many daily prayers) have been answered to date. We continue to be so thankful -- but it is hard to express just how big this gift of life is right now. We don't want to take a nanosecond to be together forgranted.
Regan is almost completely healed from her tonsilectomy and was well while in Boston over the holidays. We went out and hit some sales -- but when I got home the fraud detection unit of my credit card issuer had left a phone message indicating that it looked to them as if my credit card had been used by someone else. Needless to say when they read out the charges -- they all belonged to Regan or me -- so I think we left a shopping trail in Boston (please don't let Richard about this or I will know that YOU told him! LOL!).
The Owens family teamed up with us to ring in the New Year (by depleting the lobster population) and even ate black eyed peas with us the next day. (Yes, we made Todd eat some peas, too.) We laughed so much, told funny family stories, et al. I can't wait to see the pictures.
Speaking of pictures -- yes, I will attempt soon to update with pictures of Todd with hair. We also hope to stay on track to get Todd home in March and then begin commuting monthly back to Boston for appointments.
As I close for now, we do ask for continued prayers for Todd....and for our friends who have been on this journey with us. As we head into the New Year, we also turn the corner and take with us many, many bonding friendships that this journey has provided. These include K. Collins and family, T. Baker and family whose son Austin lost his earthly battle to leukemia -- and has his angel wings (www.caringbridge.org/al/austin), Gracie H. -- a little child who faught cancer literally full of God's grace (www.caringbridge.org/al/gracie), Chip S. -- a teenager who teamed up with us early on to do battle with leukemia -- but it proved too big a fight....and there are unfortunately so many, many more.
We also celebrate victories to date which include little Taylor W. (www.taylorwatts.org) and little ones Margaret Anne, Ally, Broxton, Sarah Anne, and Katie May....and, yes, thankfully there are more.
A thought for every day is to thank at least a person a day for being in your life. Let them know you really appreciate them in some way. Our specific journey has caused our lives to intersect with others who have prayed so faithfully for Todd -- many in spite of burdens they have of their own....and yet they find time to keep up with us. I pray for you all -- as my hands may appear to be quite full, but my shoulders are broad.
Agape,
gail
Monday, December 29, 2003 7:40 PM CST Greetings!
I hope everyone had a blessed Christmas with family and friends. We certainly have been blessed being able to have all four of us together in Boston for the holidays. It was so very, very special.
Todd feels well and has regained a great deal of his dry wit. He still has to work a bit at eating as much as his doctor and nurse want him to and he is walking about a mile about 4 to 5 times a week. It has been so wonderful just hanging out with him after being away from him for a month while getting Regan well and through the tonsilectomy. Regan has just about recovered and has simultaneously discovered "power shopping" the Boston sales on Neuberry Street.
We did not have a recent snow -- sorry, Don S. -- but there are a few remnants left from a few weeks ago.
We will ring in the New Year in Boston with "the O's".
I spent a couple of hours late today at Dana-Farber with Pat and grandson Brad -- who had to come down from Maine to get a couple of pints of blood and some xrays.
I also received news that a precious little girl, Gracie, became an angel last Saturday (www.caringbridge.org/al/gracie). She had a transplant early summer in B'ham in conjunction with treatment for a brain tumor. I had met one of her parents in a Children's Harbor parent's meeting and we had been keeping up with each other along this journey. This month has been especially tough for alot of families as they have lost their children to cancer -- and this year has been tough. I have met alot of families and their little ones while on this journey with Todd. It is a constant reminder at just how tough this walk is as we go forward and that every hour is a blessing.
Love and Hugs,
gail
Friday, December 19, 2003 1:11 PM CST Drummer Boy Cleared to Wakeboard!
Greetings!
Todd is doing well. He had a meeting earlier this week with his nurse and medical social worker to map out what he could do when he gets home. He can get back into drum lessons when he gets home for visits in the spring and in June even begin wakeboarding at Lake Martin. I know there have been alot of prayers for Todd -- but when I heard about him being able to go to Lake Martin and wakeboard -- I could not help but think of all the prayers I heard about coming directly from the Church in the Pines at Lake Martin every weekend as Jim Ray, director of Children's Harbor, led attendees in prayer.
We will be together as a family for a couple of weeks -- as we've only had about 4 days of being all together since the first of August -- so this will be so special. My cousin John will get us to Boston -- which will help greatly as Regan is still recovering from the tonsilectomy.
The bone marrow and blood drive conducted by the American Red Cross via our church, Brookwood Baptist, resulted in 26 individuals going into the registry and 32 pints of blood -- a huge success. Many thanks to Barry H. for encouraging BBC to do this and to Fred D. for leading the charge and to Bill B. for publicizing the event. And we are so thankful to the donors! I got to assist the Red Cross rep Georgia in taking the box of registry forms and insulated vials of blood to her car which she personally ferried to Atlanta (bless her -- she had even been praying for Todd before I met her). I was overwhelmed in thinking about the second chance of life that one or more of these individuals may provide to someone like Todd. Regarding the blood donations, I recalled one day at Children's Hospital here at home Todd had to get almost 3 bags of blood and supplies were dangerously low. Nurses were even giving to help supplement what he needed. We got there at 9:00 a.m. and at 9:00 p.m. a nurse came to the transfusion room and asked if we could share the last bag with another patient since Todd did not need a complete 3rd bag. She said if we could wait 2 more hours she would send it to pharmacy and they would split the bag before beginning the transfusion. Todd was so tired -- but agreed and we got home a little before midnight. The following morning he felt so good after the transfusion he woke up at 5:30 a.m. and camped out at Blockbuster to get Shania Twain floor seats!
I guess you acquire alot of memories on a journey like this. One of the memories I constantly have is of each of you who I have the privilege of knowing -- your faces flash before my mind often as I am so reminded of all the heavy lifting in prayer you have done for Todd and the rest of the family. You are each so, so special to us and this cyberspace update cannot begin to express our thanks adequately. I hope you somehow feel our return prayers of thanksgiving for each of you and that you will each have a joyous holiday season full of love, peace, joy, faith ---- and hope.
Merry Christmas!
Agape,
gail
Monday, December 15, 2003 11:46 AM CST Greetings!
Todd and Richard doing fine in Boston -- scheduling 1 mile walks between Nor'easter snow storms/Richard stocking up on food for 3 days to tied them over, etc.
Regan did fine on surgery to remove tonsils and adenoids last Friday. She has a good deal of 'to be expected' discomfort right now, but this should subside over the next few days.
Hope you all are gearing up for a wonderful holiday with friends and family. You are all blessings in our lives and we are thankful to God for each of you.
Take care,
gail
Wednesday, December 6, 2003 10:50 AM CST Update: December 11, 2003
Todd doing extremely well and staying warm in Boston!
Regan's tonsil surgery scheduled for 8 a.m. tomorrow (Friday 12/12)
Wednesday, December 6, 2003 10:50 AM CST
Here's latest from Birmingham:
Regan has tonsilitis (2nd round in less than 30 days) and will have to have her tonsils and adenoids removed prior to being able to be with Todd in Boston over Christmas holidays. This morning I met with her doctor's nurse and followed up with her school counselor and have booked Friday a.m. 12/12 at St. Vincent's. She will be out the last week of school prior to heading up to Boston the weekend prior to Christmas. She agrees to the plan as long as she gets to go to the Martina McBride concert tonight -- and said she is going to take lessons from Todd to reap all the benefits she can during the recovery period!
I reminded myself this morning that God's timing is perfect....but obviously I do not have my calendar and watch totally in synque with HIS!
Original Update December 3, 2003:
Here's the latest via Boston:
Todd's appointment yesterday went extremely well:
o Eating good (Richard has done a super job as coach and chef!
o One anti-rejection drug (Rappamune)was discontinued
o The remaining anti-rejection drug (Prograf) will possibly be discontinued the first week of January
o Appointments now to be monthly instead of twice a month -- so next appointment is 1/6/04
Our gameplan for bringing Todd home and then begin 'commuting' for monthly appointments will probably be around late February or sometime in March if aok with his doctor.
We are praying that Todd does not have any remaining leukemic cells and that he does not have any complications related to graft vs. host as the anti-rejection drugs are discontinued over the next month.
We love all of you and may you receive God's blessings!
Note: As you may know, Todd's donor which we have nicknamed "Hope" was the only match out of 5 million registered in the National Marrow Donor Program. Todd has also had to receive multiple blood transfusions during this journey to beat leukemia. Our church, Brookwood Baptist, on Overton Road in Mountain Brook is hosting both a blood drive and bone marrow registry drive this month on December 17 from 2 p.m. to 8 p.m. If you live in the Birmingham vicinity and would like to sign up, please contact Brookwood directly at 205-967-0441 for further details (to get marrow registry questionaire or for further information). Also, if you need my assistance directly, please feel free to contact me.
Agape,
gail
Tuesday, November 25, 2003 11:47 AM CST Greetings from Boston via B'ham on Day +109 post transplant!
Todd is doing well. Richard and I are doing "Trading Spaces" and he is with Todd. My cousin John transported Richard and Regan up last weekend which enabled Regan to see Todd for a couple of days prior to Thanksgiving and then brought Regan and me back to Birmingham. It was great to hear them laugh together again. They demanded that Richard and I go out on a date so they could have the apartment all to themselves without supervision. We went to the "Barking Crab" local seafood place which involved using a huge rock caveman style to crack a lobster or crab.
Before I left for Birmingham, I was talking through some details on gifts with Todd in terms of what someone might give whom....when he interrupted me mid-sentence and said, "Mom, this year we are going to learn the REAL meaning of Thanksgiving and Christmas." He was essentially saying to me to stop getting all wired up in the details and logistics and focus on the big picture of what holidays like this should really be set aside to focus on. I think I get it now....
In another conversation, I suggested to Todd that he may want to read "A Purpose Driven Life" by G. Warren which has been a popular read among BBC members. Todd just looked at me and laughed and said, "Do you really think that I need to read that NOW after going through a bone marrow transplant? Are you trying to tell me that I could have just read a book to figure out what God wanted me to do with my life instead of going through all of this!"
I think the score is Todd 2/Mom 0 based on those 2 rounds!
Hope you all are gearing up for a super Thanksgiving followed by a great holiday season!
Agape In His Name,
gail
Wednesday, November 19, 2003 2:44 PM CST Checking in on Day 103!
Todd's appointment went extremely well yesterday at Dana-Farber:
o No signs of graft vs host (skin continues to be fine, etc.)
o Counts in great shape: WBC 6.7, Hematicrit 40.7, Platelets 148
o One of 2 anti-rejection drugs (Prograf) was reduced by 50%; magnesium oxide supplement discontinued and prednizone decreased by half to 2.5 mg once a day
o Weight aok -- but dietician still wants him to eat more protein
o We dropped off a card to be sent to Todd's donor "Hope" along with an angel pin that has the word "Hope" on it as a gift -- His doctor said he could also include a picture of Todd --as long as it did not have his name on it (so we did)
o We walked earlier today to a nearby store to get some holiday shopping done (about a mile round trip) and Todd waited outside while I ran inside
This weekend we were so blessed by getting to see the Houston's (including Colton) and the Lloyds' from church who were in town. They celebrated Day 100 with us and we watched with them an incredible DVD that J. Pierce produced which included interviews from BBC friends on a recent Wednesday night fellowship. I cried big time the first time I saw it -- it is so, so special. Todd was smiling from ear to ear as each person expressed how they were thinking and praying for him. It let him see firsthand just how much people love him and are pulling for him. All of you who keep up with him are so very, very special to us. We are so thankful.
Speaking of being thankful -- 'tis the season with Thanksgiving around the corner -- and with us being right in the middle of Pilgrim Country, it does bring it to mind in a very tangible way. But Todd's illness has also brought home to us in a very tangible way just how much every day is Thanksgiving to us. We give thanks for just being able to be a family another day -- even though we are 1200 miles apart. We give thanks for each of you. We have learned that when a family member has cancer, it is bigger than the immediate family and even the extended family, but it is not bigger than God and it is not bigger than you all collectively who have teamed up to get Todd and the rest of us through this. Every day I start my day and end the day with a reading of scripture (John 4) about the royal official who asked Jesus to heal his son. Well, I tell God that I'm certainly not royal and I'm not an official, but I do have a son who has needed to be healed. I then get this feeling that it is impossible to express fully my gratitude to God -- and my gratitude to you. I have internal prayers without words that attempt to say to God that all of this is so big that I can't even speak of it using the English language. My prayer for each of you is that you will have a blessed Thanksgiving full of peace, love and joy with all family and friends.
Agape,
gail
Wednesday, November 12, 2003 12:23 AM CST Greetings from Boston on Day +96!
Todd doing extremely well....and we are all so thankful. He is managing to now eat 3 meals a day which helps get him towards the 2,000 calorie threshold more easily. He has dark hair coming in and right now it looks like a short buzz cut. His dry wit continues to run full throttle.
Richard is headed back home while I camp out here.
Todd's next doctor's appointment is on next Tuesday 11/18.
God Bless Hope (our own name for Todd's donor)
God Bless All of You
Agape!
gail
Monday, November 4, 2003 1:16 PM CST Day +89
Just got off the phone with Richard who gave me the following rundown on Todd's appointment at clinic:
o Dr. A., Toni and the dietician were all pleased and said Todd is doing great
o Todd cleared to eat a hamburger outdoors at our favorite hamburger place at Harvard -- (Lyle, Brett, Ben and Charles know this place). But they are not keen on places like MacDonald's or Subway where the food is prepared in advanced and/or the ingredients sit out.
o His dietician is pleased with his weight holding its own and the amount of ounces and calories he is taking in.
o Next appointment is in two weeks, then appointments will be scheduled for once a month.
My heart is so thankful to a special young lady 26 years old who donated her marrow -- the one out of 5 million in the National Marrow Donor Program. I pray for her even though I do not know her name -- but I call her "Hope" because she gave Todd hope and I pray that we can meet her next August.
Todd will remain in Boston probably at least another 4 months. I know some folks may wonder how one deals with all of this. I refuse to classify any logistical issues as problems. When life is beginning to truck along, it is real easy for me to look at any issues on my list and classify the next few as problems. My definition of a problem would have been if this one young lady had not agreed to donate her marrow to give Todd a chance. Other issues are not problems....
God Bless Hope
God Bless All of You
Thank you for the continuing prayers
Please pray for Sean (preparing for a BMT), little Katie (recovering from BMT), Brad (our transplant buddy recovering in Maine), Mallory (that she forever remains in remission) and little Margaret Anne (beginning Phase 3 of chemo for leukemia) and little Taylor W. (our little buddy who had a transplant and is undergoing additional treatment for another form of childhood cancer)....My prayers will never cease until they find not only cures, but preventatives so that no man, woman or child must suffer through cancer of any form.
Agape!
gail
Saturday Nov 1, 2003 Day +86 -- Original Posting
"I thank my God everytime I remember you." Philippians 1:3
I just received a cell phone call from Todd who was at the Harvard football game with Richard and having a wonderful time just 'being normal' sitting in the bleacher stands. Of course, anyone that knows the Stevens' family knows that sitting in a football stadium is 'the norm.' I could hear his voice smiling as he said, "Hey, Mom -- guess where we are!" Richard chose the Harvard game over the Boston College based on likely crowds so Todd could be a safe distance.
These two weeks with Regan have gone by fast and I am beginning to reload my suitcase as I leave one child to be with the other. I plan to be back the week of Thanksgiving as Richard and I trade hats. (Richard will stay with Todd during Thanksgiving). Richard has done an absolutely phenomenal job in working with Todd. I am so blessed to be teamed up with him on this earth to raise these children. He is a true spiritual partner. We have learned over the past 3 1/2 years as Todd has dealt with leukemia to play to our strengths and ignore (most of the time) each other's weaknesses. I guess you could say we really try to practice the art of "Agape Love" -- which brings me to my next topic....
Many times I end my updates with the word "Agape" which is a very special Greek word for Love. I feel the use of the word "love" in our English language has been abused and means many things to many people. The word "Agape" has been somewhat frozen in time since Christ was on this earth to mean "Unconditional Love" -- that is, I love you for who you are in the eyes of God -- not just in a brotherly way. If I ever struggle with the concept, I simply imagine how challenging the world would be if it were only inhabited by clones of myself (what a nightmare!). That allows me quickly get in gear to see clearly the child of God in others, the heart of their soul and its uniqueness. My Sunday School teacher, Dr. Tom T. and I had a 'heart-to-heart' talk a few years ago about how 'seeing others with the eyes of our hearts' is so key to a true spiritual walk with Christ. We shared further about how listening with the ears of our heart and talking with the mouth of our heart -- rather than having our eyes, ears and mouth be connected directly to our minds. He issued me a challenge to carry forward the theme of 'the heart'. The verse above was given to me last week by "The Agape Girls" including Francie, Julia, Skye, Caroline, Shelby, Michelle, Anna and Taylor. These are the 4th grade girls that Sally Mc. and I taught Sunday School at BBC. We called them "The Agape Girls" to illustrate that their bonding as friends in God's name as well as receiving our own love as their SS teachers, would supplement their parent's love and teachings to help them make the right choices in life. I got 'agape hugs' from many of them when I went to church....and the verse above was on a hand designed platter signed "The Agape Girls" and with each girl's signature. I am going to get a plate hanger and put it on the wall at home as a constant reminder to 'practice what I teach' to others.
Agape!
gail
Wednesday, October 29, 2003 10:51 AM CST Here's an interim report:
Todd continues to do well--
o Next appointment is Tues. 11/4
o Eating is still somewhat a struggle, but has acquired a taste for chicken pot pies
o Temperature under control
o Richard and he may walk over to one of the local college football games nearby (like Northeastern) and keep a safe distance outside from others while watching the game (his nurse approved the request)
Regan and I are enjoying being in the same household for this couple of weeks.
Another joy was getting to go to work when I got back and later in the week to fellowship dinner and last Sunday to church. There are so many special moments associated with seeing folks after being away.
I continue to be thankful for the donor giving Todd this chance at life and all the teams of people who have supported him getting this far.
Alot of folks have been asking what Todd's plans are for returning to Birmingham. Current plans are to stay in Boston until well after the first of the year.
Agape,
gail
Wednesday, October 22, 2003 9:18 AM CDT Hi on Day +76!
Todd doing very well per clinic visit with doctor yesterday p.m.:
o Counts continue to be good
o The other anti-rejection drug Prograf was reduced by 1/3 (and there seemed to be no repercussions earlier when the one anti-rejection drug was reduced by 1/2)
o The calorie intake seems to be doing so much better
o Todd can order a pizza takeout from a public restaurant (which this normally does not occur until around Day 100)
o His daily exercise level needs to be increased
Todd and Richard are holding down the fort in Boston while Regan and I are now teamed up in Birmingham for a couple of weeks.
Sunday, October 19, 2003 9:26 PM CDT Hi!
Just a quick update as Richard and I are having a
'changing of the guard' here in Boston as he came up here to relieve me while I head south (to colder weather?)....to spend time with Regan which will probably include some shopping expeditions as well as go to work onsite.
Todd has hair!!!!!!! It is about 1/8 inch long and it feels like the fuzz on a peach. He is doing great, but still expectedly tired. Next appointment is 4 p.m. ET on Tuesday 10/22. He ate 2,000 calories day before yesterday!!!!!!!!!!!!! and another 1900 today!!!!!!!!!!!!! Thank you for all the prayers. He still finds it tough to do, but this is about twice as good as it was going a week or two ago. Fever appears to be behaving much better between 99.3 F and normal even after leaving off the incremental antibiotic.
We had another blessed weekend with guests Lyle and Brett T. and Ben O. We talked and walked and laughed. Todd really perked up and got back his dry witty personality which was just wonderful.
Earlier I debriefed Richard on doing meds 3x a day, cooking baked chicken to Todd's specs, and a few other hoops to jump through. They will do well together. Richard is such a great dad and handles alot of day-to-day logistics beyond what I could even expect.
I want to say a special thanks to my cousin Jill in Columbus, MS who has been behind the scenes propping me up with prayers -- not only her own, but through her church and others. I am blessed to have her in my life not only as a cousin, but as a sister in Christ. She knows firsthand what it means to lean on God for strength and shares it with me so beautifully. I know she checks this site literally every day -- so "Hi, Cuz!"
Spiritual transplant:
As I pack my suitcase, I keep having flashbacks of other families here our lives have intersected. I will never forget meeting a young girl whose father was diagnosed with leukemia a few weeks ago and asked me to email her some websites. She emailed me her thanks but also to let me know of the loss of her dad. I had the opportunity to share back the loss of my own dad to cancer 9 years ago and how the hurt was so bad and the first year of going through family holidays was so tough. But I also shared with her that faith and time are the main healers -- but that I never wanted to completely 'get over' the loss of my dad. I also want to have this hole in my heart that does not heal and hurts -- as it helps me to also keep close at hand all the wonderful memories and to continue to be blessed by having such a super dad. The young girl emails me occasionally to share her own thoughts and interestingly I do not know her name -- just her email address -- but I will never forget her face.
Wednesday, October 15, 2003 2:25 PM CDT Hi on Day +69!
Todd had a strong round yesterday at clinic:
o His doctor said his counts "were as great as they can be" at this stage of the process
WBC Count 6.0 K/UL (Norm 4.8-10.8)
Hematocrit 37.2 GM/DL (Norm 42-52)
Platelets 121 K/UL (Norm 150-400)
o There is a good chance that his blood type has already switched from O- to O+ (his donor's type) since he has required no transfusions since he got out of the hospital -- originally it was thought this could take as long as 6 months
o Todd still running an occasional low grade temp (99.9 F. or lower) which mysteriously declines to normal after he walks. We have discontinued the additional antibiotic for now and we'll see what happens from here on the temp. At this time it is 98.2 F.
o He is still TIRED which the doctor thinks could be a sign of graft vs. host which is still not alarming given no other symptoms
o He lost only a pound this week -- and the dietician complemented him on his eating -- especially reaching the protein requirement bogey. He still needs to add about 500 calories per day -- which we are working on. If you want a hot stock tip -- try Starbucks -- as Todd's favorite liquid is Starbucks Mocha Frappacinos (pre-bottled) -- he drinks 3-4 a day.
We continue to be so thankful to be where we are with all of this.
Happenings--
We got a HUGE "scroll poster" from the Hightower SS Class which says "EAT! EAT! EAT! and is signed by each little one in the class along with recommendations. Todd just grinned when he saw it and I have it put up where he HAS TO READ IT. The class also prayed specifically for Todd to eat per Meg and Price's note. Note: Meg and Price -- Please do NOT let your class pray for ME to eat, also -- just Todd.
Todd's recent acquisiton of an XBox has meant that he has mastered several games and continues to try to get me to play also. I am pleased to report that his hand/eye and XBOX IQ far exceeds that of his mom and I have not had the chemo and head/total body radiation that he has -- so I hope this is a good sign for his re-entering Samford next fall.
Spiritual transplant:
Of course the Red Sox news is big around here and I have my own pink hat with a big navy B on it which Richard gave me.
I have thought about the game of baseball where essentially all the statistics of each game are recorded by player -- including runs, hits, errors, cumulative batting averages, etc. I started thinking about what my profile looked like in terms of my spiritual walk. Have I reached for a 'high and outside' ball (synonomous with reaching out to someone outside of my comfort zone) in an attempt to advance the Kingdom or have I just been content to 'pray for a walk' and take the easier road. Have I really been on God's team as a true team player on the team of believers as opposed to being concerned about my own 'ata-girls' for everyone to see. Have I been content to play the position God (the Head Coach of Coaches) wants me to play -- which may mean being on the bench occasionally vs. me calling that shot for myself.
Humbly in His Name,
gail
Saturday, October 11, 2003 2:29 PM CDT Hi!
CaringBridge is doing a server update and will be down for a few hours so here's an update:
o Got a call from Toni -- Todd's coordinator nurse -- yesterday evening indicating there is no evidence of infection to date in the cultures run last Tuesday. In the interim, his fever is still fluctuating but south of 100 F. and around normal.
o He and I went for about a 3/4 mile walk earlier today.
o The hydrogen peroxide/yogurt rounds are helping the appetite and it looks like he has not lost weight for 2 days in a row!
o A BIG THANK YOU to the BBC staff and choir and deacons for posing with Regan for some action shots around the church. WE LOVE EACH OF THEM. THAT was so much thought and effort. We took the pictures to the clinic last Tuesday and showed Toni, Amy (social worker) and Suzanne (dietician). They could not believe all the people helping us out and thought it was wonderful. Thank you from all of us to each of you.
o Richard made it home this morning.
o Regan doing much better after going thru strep and a virus earlier this week. Thank you Lynne, Meg and Dr. Hamm for getting her on the mend in record time!
o Brad's grandmother, Pat, called me to let me know Brad is getting out of the hospital on Monday! Pat got the union construction workers of Local 7 who are putting up a new high rise building next to the hospital to write in big letters "Hang in there, Brad!" on the outside of the building on the I-beam. I took some pictures of it.
Well, better get this logged in!
Love you all,
gail
Wednesday, October 8, 2003 12:37 AM CDT How 'bout those Red Sox!
Todd saw his doctor, nurse coordinator, social worker and dietician yesterday at clinic:
o Counts great: White cells 7.4, Hematacrit 38.8, Platelets 95
o Regarding fever, a blood culture from his port was taken and we should hear back tomorrow if there is a reason for the infection (port, graft vs host, etc.) -- but the great news is that there are no other signs presenting. The additional antibiotic was continued and a low dosage of prednizone added
o Regarding appetite, it appears that a large part of the weight loss problem may be eliminated by activating Todd's taste buds by using a regimen of 50/50 water/hydrogen pyroxide followed by eating live bacteria yogurt. We tried it yesterday and again this morning -- and it made an instant big difference in his ability to take in protein.
o He looks and feels so much better this morning!
Lynne let us know that Regan has strep throat. Thank you, Meg, for signing up early on to take her to the pediatrician and thanks so much to Dr. Hamm for looking out after her. She is home from school today and appears to be doing much better!
Brad may get out of the hosptial in about a week! His grandmother Pat called last night and she is so thankful, relieved and excited. They were able to take him outside yesterday in a wheelchair.
We look forward to having Lyle T., Brett T. and Ben O. join us in about a week and a half.
Blessings to all of you!
Monday, October 6, 2003 1:57 PM CDT Hi from Red Sox territory!
Todd doing well:
o Temp ranging from 99.5 F. to 101 F. -- but since no other symptoms, a check in with DFCI last Friday indicated we should just keep moving forward
o Next appointment tomorrow at 11:30 a.m.
o Eating has backslided where foods like bacon, roast beef with carrots/onions and trimmings, etc. now no longer work and intake of liquids has fallen back too -- so I left a message in advance at DFCI and we'll focus on it tomorrow -- I think he has probably lost at least 7 pounds in the last couple of weeks
o No visible signs of graft vs host as a result of pulling back on one of the anti-rejection drugs
o We all went for a good walk yesterday afternoon
The weekend was just wonderful. Libby and son Charles arrived Friday early evening and were fortunately able to stay in some guest rooms here in the building which made it so convenient. We went out (while Todd held down the fort)-- and managed to decrease the lobster population significantly in terms of number and weight (ask Libby or Charles for details). We then returned and camped out with Todd. Saturday Libby and I went shopping while Richard and Charles found a piece to get Todd's XBox linked up to the TV. Todd and Charles had a great time spending the day at the apartment. Richard met up with Libby and I later in the afternoon. We then took in the ALA vs GA, AU vs TN and the Red Sox vs Oakland games. We had alot of fun just laughing and sharing. The next morning we held hands in prayer before they left. What a blessing their visit was to all of us.
Regarding Brad, I had a call from his grandmother Pat who indicated Brad may have developed graft vs. host related to the digestive system and could potentially take him back to critical status. Results from a biopsy may be available today to confirm. Pat herself was put in the hospital last Thursday night for a day or so due to high blood pressure. I pray that she her health holds up through all of this and that Brad gets well soon so he can go home with her to Maine to recover.
Take care,
gail
Wednesday, October 1, 2003 2:01 PM CDT Hi!m Day 55+
Todd's appointment at clinic yesterday afternoon went well.
o Regarding the fever: One round of antibiotic worked it down from 101 to 99.3 by the time the clinic staff took a read on it, but it was back to 100.7 last night and down back to 99.7 most recently -- the doctor said to keep him on the antibiotic for the next week and watch it.
o Overall appointment went great: Counts continued to be strong and no evidence of graft vs host for now. The doctor said he will now begin slowly decreasing the anti-rejection drugs and cut one of the two drugs Todd is on in half beginning today -- and now we start watching. He continues to say Todd is doing very well.
o During the appointment we were joined by Deborah who is actually the person who located and coordinated the wonderful donor. She had heard how well Todd was doing and wanted to just sit in and hear for herself. I am so glad she did as I had not seen her since well before the transplant.
o Todd's weight has declined a bit, but he is actually getting up late morning and asking for bacon and orange juice -- which is wonderful. The rest of the day is still a bit tough to continue to get food down him, but I have managed 1/2 of a box of Frosted Cheerios and he has asked for roast beef, carrots and onions for dinner -- so I'm on my way to the store for the ingredients. He drinks a fair amount of Gatorade and Starbucks bottled Frappacinos during the day.
o Todd insisted on walking to the clinic and back to the apartment.
Brad's grandmother, Pat, walked over yesterday from the stem cell unit and sat with us in the clinic waiting room and gave us an update on Brad. He is up walking with a walker and they had not given him a blood transfusion that morning. We are so excited for him.
Looking ahead: Libby and son Charles will join us for the weekend and we had a call earlier today from Lyle T. that he and Brett will be coming up for a weekend later in October. Regan is lobbying to return about the same time given the teacher workday and end of the nine weeks coming up.
Well, I think that's the news for now. I am grabbing Regan's fifth grade backpack and heading to the store!
Agape,
gail
Sunday, September 28, 2003 3:25 PM CDT Hi!
Well -- what a wonderful blessed weekend we have had! Regan spent the weekend with us and my cousin John and his wife and boys were able to team up with us at dinner a couple of nights and join us here at the apartment early this afternoon. Regan and I went shopping yesterday on Newbury Street and the Prudential Center Mall and Richard met us later on to carry a few shopping bags back to the apartment (as we rode the "T"). Richard flew back this afternoon with Regan and John and his family.
So Todd and I are holding down the fort this week. He is still tired and not eating very well and not drinking quite enough ounces of fluids and still running about a degree of fever. He did get up this morning and say he was honestly hungry for a change and wanted bacon for breakfast and a few Frosted Cheerios (which he eats one or two cheerios occasionally at a time -- and may take 4 hours to eventually eat a box). His taste buds were nonexistent in the hospital and now are very, very slowly coming back -- for example, he said today he could actually taste the sweetness of the cereal. I hope and pray his weight is ok on Tuesday afternoon when we check in at clinic.
Practice Swings of Faith
One of my favorite things about watching the Red Sox play this season is seeing a batter warm up by taking a weight and slipping it on the bat and then swinging the bat a few times. When I played softball (quite a few years ago), I used to love to warm up similarly by taking two bats (in lieu of a weight). Of course, the effect is to make the single bat feel so much lighter. I feel like my faith in God has give me many opportunities along the way to take practice swings in the form of:
-- listening to sermons while trying to avoid thinking about what I needed to fix for lunch
--teaching Sunday School to little girls when it would have been so much easier to sit in a class and be taught
-- assisting with spiritual retreats when at times I felt like I should just go sit on a log and stare at a tree and call it my own retreat
-- assisting in building a church when I would be so tired that all I could feel were my sore feet
-- serving on various committees when I may have been missing out on doing something else -- but now I can't remember what that was
-- going to many Bible studies
-- enhancing my personal prayer life
Now I find myself so thankful that I took the time to do these things when God's calendar for me allowed for the time for my faith (along with your own prayers) has given me the strength to hold up under all of this).
Footnote Mon 9/29 5:00 p.m.
Todd's fever did go up to 101 degrees F. this afternoon so we talked to his doctor who has prescribed an antibiotic to get us through the evening and morning until we go in for a regular appointment tomorrow at 4 p.m. Given that no other symptoms are presenting, he said this would allow us to avoid checking back into the hospital this evening....we'll take a few extra prayers right now in the interim.
Agape,
gail
Thursday, September 25, 2003 7:28 PM EDT Hi!
Todd did great during removal of Hickman line -- thank you so much for the prayers. He walked to the hospital....had it done via local anesthesia....and insisted on walking home. He is VERY tired and....as usual we are pushing food and liquids. Richard is trying out one of his secret recipes on him -- so we hope this works.
I am at the hospital right now sitting with Brad's grandmother who called me indicating Brad has serious internal bleeding -- so they were gearing up to take him to surgery tonight. I am so hoping and praying that the doctors and nurses will be guided by God to find out what is wrong and be able to fix it. Brad talked to me while we went down to the operating room -- he is such a dear.
I talked to Regan tonight. She loves the hugs she gets at church. We will meet her and John and his beautiful family at the hotel tomorrow. I am so excited I am numb.
Original: Sept 24, 2003 11:28 AM CDT
Here's a rundown based on Day 47+:
o Todd's clinic visit yesterday went extremely well --
-- Counts strong: White count 5,200
Hemoglobin 12.1
Hematicrit 35.5
Platelets 110
-- Hickman line -- which was used for all meds, nutrition, transfusions -- and the new marrow -- to be removed tomorrow (Thursday)at 2 pm EST at Brigham and Williams Hospital. Todd is nervous about this as they evidently do not put patients to sleep to do this -- so hopefully that will go smoothly
-- He has been having a fever ranging as high as 99.8 degrees F. off and on over the last 3 days -- but the doctor said that his young immune system is going to have to stand up and fight hard any small thing -- so Todd is trying to push liquids to try and keep it under control. It was 97.7 at clinic which was good. He insisted on walking to the clinic and back and will take a walk with Richard later today--as the doctor is continuing to recommend the exercise.
-- Todd lost 3 pounds for the week and the dietician has asked that he try to maintain his weight over the next week or at least not lose more than 2 pounds. He is still struggling to eat and drink enough calories and ounces -- but Lyle T. has explained to us that this is so very very tough to do. Todd even eats ice cream for breakfast once in a while! He has also been asked to eat processed peanuts to try and build up his magnesium from natural sources.
-- The doctor indicated that beginning on Day 60+ that they typically start scaling back on anti-rejection/immuno-suppressive drugs (which Todd is taking orally now) and will gradually do that over about 6 months while keeping an eye out for any graft vs. host reaction.
We are looking forward to seeing Regan and my cousin John, his wife and the boys Friday evening. Last night Regan called us to help her answer a technical question about the French Revolution -- so I found the answer using Google on the Internet while Richard explained the answer to her (I am the techie & Richard is the historian). The doctor said Regan will not have to wear a mask and gloves while she is in the apartment around Todd -- which was great.
I just had a call from Brad's grandmother and the doctors have said there is now a chance he could get out of the hospital in 2 weeks. The Pig DNA trial drug was stopped after about 2 weeks in attempt to open the blood vessels in the liver. He is doing better but still critical right now, but they are taking no chances. I thank you for all the additional prayers for Brad. When Todd was in the unit he would always watch for me to come in and would wave to me through the plastic curtain.
OK -- now about the Boston Marathon Jimmy Fund Walk last Sunday -- Totally awesome. Richard and I walked with other patients and families the last 3 miles of the walk. It is organized so that the patients/families leave Harvard Medical School's quad, walk past Dana-Farber Cancer Institute, past our apartment and merge into the official Boston Marathon route with other walkers who have been walking the 26.2 mile or 12 mile version. It was such a thrill to see thousands of white Jimmy Fund shirts on both adults and children both in front of us and behind us as far as we could see....all walking for loved ones -- many who were pictured on the T-shirts. I was overwhelmed with tears of joy as I walked as I thought of all of you who have 'walked this marathon' with us. Richard and I were cheered as we crossed the finish line downtown at Copley Square and they hung medals around our necks and took our picture. Earlier at the med school quad Richard noticed Harry Belafonte standing humbly a few feet from us. He shared his story of beating cancer (now clean 6 years) with the patients and families. The single day event raised about $5 million for cancer research. "Jimmy" a little boy who was actually cured of cancer around 50 years ago here.
Todd's transplant and this experience have been so moving to me....to the extent I will never be the same person going forward. I have such a greater appreciation for EACH and EVERY DAY of life as well as the challenge I have to end each day hoping that I have contributed in some way to God's Kingdom through my prayers, my thoughts and my actions.
I love you all and hope you can at least feel a long distance hug!
Agape,
gail
Saturday, September 20, 2003 11:08 PM CDT Here's an update:
o We had a super visit from Ed and Bettye C. who stopped b the apartment to see Todd. Then we went out for lunch -- which Todd told us to take our time in order to give him some time 'w/o parents' at the apt.
o Todd continuing to rest during the day a bit more now and actually was nauseated this morning -- which is the first time since getting home from the hospital and the second time since going through transplant. We think since he has been trying to push so many more liquids and food -- it could have caused this reaction, but Ativan is controlling the problem.
o We are eagerly waiting to see my cousin John, wife Regina and the boys next Friday evening -- plus Regan who will join them in being here for the weekend. I am counting the hours.
o Richard and I are walking the 3 mile trail for the Jimmy Fund tomorrow morning which raises money for cancer research for Dana-Farber. There is also a longer walk using the entire Boston marathon route.
Regarding Brad, I went down to the hospital Friday evening to see his grandmother who spends nights with him. They have drained more fluids off (for the 3rd time) and counts continue to improve and the transplant related stats look good.
We continue to pray for Todd's healing and also the healing for all we have met directly or indirectly through this journey.
Have a blessed week -- you each and every one are so dear to us and we thank God for your being there for us each step of the way.
Agape,
Gail
Wednesday, September 17, 2003 9:32 AM CDT Checking in on Day +41:
Todd's appointment @ clinic yesterday went well
o Counts: White Cells 6.4 vs 3.9 last week
Hemoglobin 12.7 vs 11.7 last week
Hematicrit 37.0 vs 35.0 last week
% Polys: 49% vs 49% last week
o Todd is extremely tired now and it was explained to him that this is due primarily to --
-- the fact that an unrelated donor bone marrow transplant is more to go through than a heart transplant and while he has done so well, he may have a 'slump' where he just doesn't feel up to par
-- his intake of liquids and total calories is just not where it needs to be (calorie intake is about 1/2 of what it should be) -- so he (and we) received some strong coaching as he lost 5 pounds in a week -- and that is not acceptable going forward (I have tried sneaking additives in that have been suggested along the way, but he figures it out and balks)
We had a wonderful time getting out Sunday night and also Tuesday night to have dinner with Jim and Sondra M. They were so gracious to do that--plus Todd was elated that they got us out of the apartment and away from him for awhile! They loaded him up with videos and car catalogues.
We hopefully will get to see the Ed and Bettye C. this weekend.
Regan is doing well based on our conversation last night.
Prayer requests:
o Please pray with us that Todd will get the calories and liquids in he needs to each day going forward so that his body can recover and not incur any kidney or other damage
o We pray for his complete healing
o We also pray for Brad, the grandson of a wonderful lady I have teamed up with here. His transplant was shortly after Todd's and his liver function has been affected critically by the upfront chemo and radiation with the only hope right now dependent on a pig DNA based clinical trial drug working out to get it back
Agape,
Gail
Wednesday, September 13, 2003 6:07 PM EDT Touching base with an interim update:
Todd continues to do well.
o Graft/Host rash flared up slightly on forearms a couple of days ago but topical ointment simmered it back down
o Appetite still slow, but he is trying and asked for a frozen pizza to try tonight (which further supports the Italian donor theory). He cannot order out -- and my homemade pizza skills are lacking.
o His sense of humor is running pretty strong
o Today he said he missed being able to drive -- which is a good sign he is feeling better
o He really enjoys reading all the cards you send him
o He is keeping up with the pro and college football games -- I never thought at least 3 of us in the family could actually share the same single TV -- so I guess you can say I'm also keeping up with the pro and college football games -- and it is a privilege to do so
o He gets on the internet occasionally -- and enjoys making me logoff
o We try to keep him supplied with recent car and boat magazines
o He is putting up with mom and dad
o Early indications are that chemo, radiation and stem cell transplant have not eliminated any sibling rivalry
We are awaiting the rumored FedEx arrival of more car magazines from Diane M. (Thanks, Diane!) and for little 7 year old Riley's school assignment asking Todd to send him a postcard back from this area. (Hi, Riley!)
Regan said she is missing us as of last week. We are so thankful for everyone who is taking care of her and so proud of her for doing well in school. We look forward to having her up here for the weekend soon.
We continue to thank God for each of you and are so thankful to have Todd doing well. Next Tuesday he has another appointment.
Prayer from a mom's heart:
A recent article in the Alabama Baptist (9/4/03) recapped the story of Rony from Honduras who is now 13 years old and has had 3 major surgeries by Dr. Morris to correct his feet. Todd read the update and has actually tracked Rony's story and uses it as the model he wants to follow on the medical mission field. He used this story in his application earlier this year to attend Samford and asked me to save this recent article. This reminded me of verse Isaiah 40:31 "Wings of Eagles" which Marla Corts gave Todd to take with him to Boston....and I also recalled John Josey saying in a Bible study several years ago to 'back it up a verse'....so I backed this particular verse up a few verses and offer the following as my prayer for Todd:
"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:28-31 (NIV)
Dear God: Please heal my son and let my son walk and not be faint....and run and not grow weary....and soar on wings like eagles...for Your Kingdom. In Your Name. Amen.
Love,
Gail
Original Journal Entry 9/10/03 10:05 AM ET
Here's an update from Todd's appointment on 9/9/03:
Todd's appointment with his doctor, nurse coordinator, medical social worker and dietician went extremely well yesterday:
o He decided to walk the half mile to Dana-Farber from the apartment (in lieu of a cab) and to walk back (and has been walking outside anywhere from 1/2 mile to a mile at least every other day for the past few days)
o Counts are in good shape: White Cell Count @ 3.9, Hematacrit at 35.0, Poly % at 49%, Platelets 30 (but doctor said do not worry as this is seen at this stage).
o Graft vs. Host rash under control and no other signs of graft/host apparent
o Drinking of liquids and eating still have some distance to go as calories need to be 2,500 per day and drink 72-80 ounces per day to enable his body to rebuild
o Two meds were discontinued: Potassium Chloride and Magnesium Oxide. He continues on 2 immuno-suppressive/anti-rejection drugs, 2 anti-bacterial drugs, folic acid and just a few non-prescription (primarily vitamin related)
o His nurse coordinator said he looked great last week and looked even better this week
We continue to be so thankful!
The doctor clarified that Todd really does not have to wear a mask while outside unless someone is digging up dirt nearby, cutting the grass, coughing, as he walks by.
We are continuing to pray that Todd avoids any complications including graft vs. host (GVH). The 'mile markers' for GVH are the first 3 months for any 'near term' issues and 3 months and out for any longer term issues. We also pray that Todd is completely healed.
On a ligher note -- Todd has DEMANDED that Richard and I not have a car up here and to get in shape by walking everywhere (including grocery runs). We are allowed to ride the "T" (public transportation) for distances greater than about 2 miles. We average walking about 2 miles a day or more. Richard may get one of our vehicles up here given that the weather may get colder in a few weeks. Todd has refused to let that be any excuse....and the only way he'll allow it is to control the car keys and grant us permission to use the vehicle on a case by case basis! It's good to see his spunk!
We continue prayers here locally for patients and families we have been teamed up with in the intensive care stem cell unit. This is a tough road for all....and it is rewarding to see anyone get to go home and be with their families. We especially keep Brad in our prayers as he is now on a drug to try and get his liver functioning. I'll walk to the hospital tonight to have a quick dinner with his grandmother and sit with her for a little while. Brad asked her the other night to pray some 'Baptist prayers' with him.
We realize prayers are not just 'one way' and continue to pray ceaselessly for you all. We get the weekly BBC prayer list (thank you, Londa!) and the Colonel keeps us posted within the week. We look forward to seeing Jim and Sondra M. up this way in a few days, followed by Ed and Bettye C., my cousin John and family (who are brining Regan!) and Libby and Charles. This will do Todd so good to have some quality 'non-parent' face-to-face conversation.
The phone calls and all the cards continue to be blessings. We have all the cards out and displayed in the apartment as constant reminders of all of you.
We love you all!
Thought:
I mentioned all the walking we were doing and I must confess as one who has traditionally always gone up one more level in the parking deck to find a spot closest to the elevator doors -- or looking for a parking place closest to the church (and if need be 'creating one') this has been an adjustment. I found myself early on as heading out on a walk wishing I was already at the destination (hospital to see Todd, grocery store, back to apartment, etc.) RATHER than even think about enjoying the interim journey. Over time up here, I have learned to 'take one step at a time' and actually to enjoy the interim process of the walk itself. It reminds me of my daily journey with God, while the end goal is supreme (everlasting life with Him), the process of life along the way presents immeasurable opportunities for seeing the blessings.
Agape,
Gail
Friday, September 5, 2003 8:30 AM CDT "Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me." Philippians 3:12 (NIV)
Checking in on Day +28 -- 4 weeks post transplant/1 week out of the hospital stem cell unit:
Todd seems to be doing well and we continue to be SO thankful to God and all of you for praying us through all of this. The transplant team of doctors and nurses here at Dana-Farber Cancer Institute and Brigham & Women's Hospital her in Boston have been so wonderful....as well as the doctors and nurses @ Children's in Birmingham who did everything they could to have him in the best physical shape to go through this. We, again and again and again, ceaselessly express our thanks to all of them for all they have done and all they are doing.
Yesterday he managed to eat 2 small meals....and yes, they were both spaghetti -- per his request! I don't think he has eaten 2 meals within the same day in a month , but his weight is hanging in there at 164-165. He lost 12 pounds during transplant. He is still working on upping the liquid intake but is getting there -- he added orange juice (pasteurized) this a.m., so it's good to get some form of fruit.
He still has some graft vs. host related rash -- primarily on his forearms, but is doing great in treating it topically and it seems to be responding.
We had a super visit from family friend Moe Davis earlier this week while he was here on business. He had taken Regan to the beach with his family over Labor Day and he and his wife, Nancy, are helping out with logistics related to Richard's mom (along with others -- including Mimi S.!) We are looking forward to Jim and Sondra M. visiting us soon, followed by my cousin John and his family (who will bring Regan for a visit with them). Then Libby and Charles will come in. This is great for Todd as he seems to really enjoy some quality conversation that is not initiated by his parents!
Todd's primary home health nurse, Pam, came yesterday to tend to the Hickman lines. She is so wonderful. We greeted her at the door with Purell, masks and gloves....and she elected to wear another mask and another set of gloves on top of that -- just to be extra careful with him. We have taken pictures of several of the folks who have visited or taken care of him, but they look a bit unusual as they all have masks and gloves on!
We have met so many, many friendly warm helpful loving folks here that have gone so far out of their way to make our stay a great one, extra helpful with additional information, greeting us with a smile, et al. In fact, EVERY one we have met, has just been super without exception.
(Pause)
I made a pact with myself that I would not turn Todd's website into a pulpit as we go through this, because I recognize that, unfortunately, all of us go through some challenges in life with ourselves and/or other family members and/or friends -- that have the capacity to build our faith in God. We are also so thankful that you share your prayers in such a way to make time for Todd's needs. But after talking one day to the chaplain, she encouraged me to be more open and to share what we feel....so please oblige me occasionally.
I continue to be so thankful for Todd's own 1 to 1 relationship with God -- that is not dependent on Richard and me being in the middle. He is God's own child first and we are 'on the bench' in many ways -- ready to come in as needed for support. He and God are able to ta |
