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6 Jan 03 Hi Everyone - here is the promised information on Ken's funeral. Place: Wright and Ferguson Funeral Home 1161 Highland Colony Parkway Madison, Mississippi 39157 (601) 853-7696 Time: Visitation - 12:00 PM Funeral service - 2:00PM Date: Saturday, Jan. 11, 2003 Several people have asked for an address to send cards: C/O Frances Bailey 227 Timbermill Madison, Mississippi 39110 Thank you so much. Love, Nancy 5 Jan 03 Hi Everyone - this is Nancy - I'm having to fill in to enter this update because Ken isn't here to do it. He is in Heaven with Jesus. He died peacefully this morning around 5:20. I really don't know what else to write. I miss him but I'm glad that I will see him again when I get to Heaven. The Bible says that when a man and a woman get married they become one. So I feel like half of me isn't here in the "shadowlands" anymore. Y'all should have seen the sunrise this morning from Ken's hospital room window. It was glorious. It made me think maybe it's all bright like that to welcome Ken home. Steven saw it too from our apartment balcony - he even took pictures of it with the camera. Steven also said tonight's sunset was beautiful - I didn't see it. But here's a neat thought - maybe the celebration was still going on! After all, it was a really long illness ... So - I will update this site very soon as soon as I know information about Ken's funeral. I want to thank all of you for the prayers, the phone calls, the emails, writing in our guest book (I usually read the guestbook first thing in the morning - such an encouragement to me and Ken!), all the support you have given to us. Ken and I know we are blessed with so many incredible friends. We have an incredible family too - you should have seen them go into high gear to take care of us. And God is good and everything He does is good. ( Psalm 119:68). I don't understand it all but that's ok - I trust Him. I was having some questions - you know - why is this happening - it's not fair - but as I was questioning, God was gracious and helped me understand this. God really really really loves Jesus. He would never have allowed Jesus to have to go through the Cross if it weren't absolutely necessary. And God really really really loves Ken, me and our kids. And He would never have allowed us to go through this if it weren't necessary also - not of course for our salvation, but for something really important - something that Ken and I cared about a lot. And then there's "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." (2 Corinthians 4:17) Gotta like that! For someone who didn't know what else to write, I sure haven't stopped - I am putting Ken's last update below. He had typed it into the word processor and he had asked me to check it for typos, etc. Before I could do that, an infection set in and it was fast moving. So here it is- 2 Jan 02 (Day) Nancy and I hope you all had a very happy New Year's. We did in our family. Straight to the medical news, the Mylotarg did absolutely nothing. It caused all of my counts to drop for about 7 days and when they started coming back, they came back all leukemia and more aggressive than they have ever been. The number of leukemia cells circulating in my blood was 98% blast. That means for every 98 white blood cells in my body, 98 are leukemia and 2 are "good" white blood cells. Not nearly enough to keep me healthy. This was the last treatment for me. Anymore chemo will kill me faster than the leukemia, so with a lot of praying and family discussions, we have agreed with the doctors and have entered what they call "end of life care" here in Seattle. The reason we are not coming to Jackson anymore is because I had another adventure with going septic several nights ago. By going septic, I mean my body was invaded massively by a bacteria and they were barely able to pull me through. With a lot of praying and massive antibiotics, they were able to bring me back to health, but it has left me much weaker and in a lot of pain to where I need the pain medication in a 24 hour infusion to keep me feeling well. With my broken foot, no immune system and having to live with oxygen on all the time, it is too risky to try and fly home to Jackson. Since I have stopped all treatments, I have actually started feeling and looking better. They have put me on a new drug that is suppose to lower the number of white blood cells in my blood stream. So far it has worked well in keeping the number down from a high of 60,000 to 16,000. This doesn't affect the leukemia in the bone marrow, it just helps with the pain caused by all those blast in the blood stream. The doctors have told me I have a few days to a few weeks left. We are grateful for all they have done for us. Medically speaking, they have worked as hard as anyone can expect to try and cure me of this disease, unfortunately, medical technology is not far enough advanced to help a person like me with such an aggressive form of leukemia. So, what is left. Well, everything, as far as we are concerned. Our whole family has turned to the Lord throughout this ordeal. The amount of faith in my little family has overwhelmed me. Just when I think it can't get any strongerit shows up stronger. I have turned this problem completely and utterly over to the Lord. I have been praying for the peace that passes all understanding that only God can give. Let me tell you, He has poured it out on me in a dose I didn't think was possible. I sat up in my bed last night here in the hospital and just thought about my Lord and where He has placed me. He has taken away any inkling of fear I have ever had and cast it away. He has put a feeling in my heart I couldn't even begin to explain. I wish I could, because it has truly given me the ability to say that whatever happens in the next days, weeks and months, we know it is God's perfect plan. I am at peace with whatever plan the Lord has for me and I want Him to choose, not me. The peace, honor, glory and love I have for my Lord allows me to say, "I want your choice, even if it isn't the choice my human heart would make." In other words, I don't want to mess this plan up. My will has aligned with Yours finally, and it gives me strength to be happy and say, "ok". Happy Birthday Lord, Savior, Jesus Christ!! (Day 118) Ok, where to begin. My counts came back last week and they were about 60 percent leukemia. Needless to say, that is not what we wanted to hear. The doctors gave me very few choices to pick from. One was to patch me up and sent me home for "end of life care". The other was to hang around here for the same care or I could try a couple of newer drugs that work on some people but don't seem to do much for other people. It was a very hard choice to make. This new chemo would make me neutrapenic again for about a month. This could make me neutrapenic for over two straight months prolonging my exposure to a life threatening infection. After much praying, we decided to try the new chemo. It is called Mylotarg. It works on about 34% of the people under the age of 60 who try it. It is usually used on the elderly because the side effects are usually a lot less than with normal chemo. I took it and it caused a few side effects that night, but I have been feeling better every day since. Now we are back into the "wait and see game". I am doing much better with my foot. Turns out it is a fracture of the left ankle. There will be no need for surgery and I will have to keep the weight off of it for a couple of months. I am using a walker and a wheel chair to get around right now. For my oxygen problems, my lungs seem to be getting better everyday. I use supplemental oxygen right now but at very low levels. The VA came and set up an O2 generator in our apartment yesterday and I was able to come home for Christmas Eve for 3 hours (trial run) and today I will be able to go home for about six hours. If everything keeps moving in this direction, I could start spending the night back in the apartment again real soon. My brother Scott came to town last night around 2230. It will be great to see him today. He gave up his Christmas with his family today to be with us. Needless to say, we are very happy to have him here to help out while I'm trying to get mobile again. How things do change is only a year. Last Christmas I woke up and made my traditional blueberry pancakes for the kids and we had a wonderful Christmas with Nancy's family who were visiting. I had gone through the initial chemo from May to November and I was feeling great. I was back in the Air Force as commander of the 85th and had an assignment to the Naval War College in Rhode Island the next summer. I was BACK! I look back over that year and I realize how little we really do control our lives. I wake up each morning now and the first thing I do is praise the Lord for allowing me to come to Him before it was too late. To live in this life, grabbing for all I can suck in and then to die without Him would be tragic. To live this life for Him and to know His plan is the perfect plan gives Nancy and me all the peace in the world,. God Bless you all..,.Merry Chirstmas! 12 Dec 02 (Day 112) A lot of things have happened since my last update. First, my lungs were unable to recover from my latest round of chemo liked we hoped they would, so I have had to go on some pretty heavy steroids to try and bring the resulting inflammation under control. This landed me on high flow oxygen for about a week or so which caused my oxygen levels to really whack out. At times this would cause me to go to very low levels of O2 saturation which in turn would cause me to lose my balance or to start hallucinating (or both). I lost my balance twice in my room and now have a broken foot. This caused me to be put on some more pain medicine which caused me to stumble again and so I am nursing an ankle with possibly two fractures. That is all the bad news. The good news is that I am now tapering off the steroids, the pain medicines and the oxygen. The next big hurdle is to wait for my counts to come back. This could happen any time between now and two weeks from now. I have now been without an immune system (neutrapenic) for 20 days. On even brighter news, Lesley, my sister-in-law (my brother's wife) is out here visiting. She has been helping out with the kids so that Nancy can stay up here at night with me. When she leaves, my brother, Scott, is coming up here Christmas Eve for a few days to visit and help out. He will stay until my sister, Sara, and her family get up here and stay through New Year's. It will be great to see them all. And having them to help out will be a big boost. Hopefully, I will be out of the hospital by then at some point. I have really been out of it lately (pain medicine and the hallucinating). I'm afraid my emails have really backed up and I have missed many emails over the last two weeks. If you wrote me and I didn't write back, sorry, it is probably gone now. But remember, I do read all of my guest book entries and they have really helped raise our spirits. Please keep the prayers coming. We know the Lord is listening and His plan is unfolding before our eyes. Even though things have been looking tough lately, we have not lost our faith in the Lord Jesus Christ. No matter what happens, we are firmly planted in Him. God bless you all. Until I get my strength back more, I will probably keep the updates to a bare minimum. 7 Dec 02 (Day 100) Well I am out of the hospital (for a little while at least). I finished up the chemo on Tuesday and they are allowing me to be an outpatient as long as I am feeling good and not running any temperatures. So far so good. I tolerated the chemo pretty well. Unfortunately they mixed it with that high dose cyclosporin and my stomach was not too fond of that. With the help of some anti-nausea medications, I did pretty good. Of course, I am now neutrapenic (no immune system) and that will last for about 3 weeks. My only problem right now is that I bit tongue in my sleep causing a blood blister to form. Since my platelets are so low (along with the netrapenia) it turned into a very large sore that is keeping me from eating and drinking very well. I will have to live with that until my immune system comes back. Nancy went out and bought some Christmas decorations. We have a tree up and the kids all decorated it on 1 Dec. We have our stockings up and of course a nativity scene. They did a really good job and the house feels like Christmas. The kids are doing great. Their school continues to spoil them. This week a wealthy lady took the kids out to buy new clothes so they could go to a $200.00 a plate dinner tonight (which she is paying for also). Keeley has a very elegant dress, fancy shoes and some new earrings for her big night out. My boys are, of course, going in kakis and sweaters. I guess they take after their dad. They said if they had to put on a tux of a suit, they weren't going. No one seemed to mind, so off they went. I really want to thank everyone for the guest book and map entries. They really help Nancy and me keep our spirits up. A lot of folks have asked about visiting us over the next couple of weeks. I'm afraid I am going to have to say, "please wait to come see us until my immune system is back". That will be sometime in late December. Right now, even a common cold could kill me and the person visiting may not even know they have the cold yet. I hope everyone understands. The Lord continues to bless the Tatum family. Soon we will know what God has planned, until then we pray and sit on the watch tower waiting to see His plan unfold. Thank you for joining us in prayer. I know He is listening. God bless you all. Thanksgiving Day 2002 (day 91) Happy Thanksgivings to all of our family and friends! Well it is a fast moving ballgame in the world of leukemia. On Friday I was in the beginning of a relapse. By Sunday the leukemia was raging out of control and I had 35% blast (leukemia cells) in my circulating blood. This is the first time the leukemia has left my marrow and circulated in my blood stream. So, on Sunday afternoon the doctors called me and Nancy back into the hospital and told us they needed to do something quick before the disease overwhelmed my new donor cells. So, here I am in the hospital (again) getting a round of "induction" chemotherapy to kill off the leukemia. They are using the HDAC Ara-C (same drug I was getting at Keesler AFB) for the first five days and then they are going to give me a combination of high dose cyclosporin and daunorubicin. Daunorubicin is a cousin to the Idarubicin I took during induction chemo at San Antonio when all this started 19 months ago. The cyclosporin is the same drug they were using to suppress my immune system, but now they will be giving it to me in a very high dose. They have found when they combine it with the Daunarubicin it helps to kill the leukemia cells that have become drug resistant. They are letting me do the HDAC Ara-C during the day in the hospital and then they are letting me go home on pass in the afternoon and returning the next morning. I can do this as long as I am tolerating the chemo. When they start the other drugs, I will have to be a full time inpatient. This will start Sunday and could last for several weeks. Nancy and the kids will be coming up here to the hospital soon. The Marrow Transplant Unit is hosting a Thanksgiving dinner for all the patients here at the Unit. For me, I will be having a unit of whole blood along with my Turkey and dressing. Yum, Yum! Nancy and I were talking this morning and we both agreed; we are a very blessed family. We are all together for Thanksgiving, God has taking care of our every needs, and everyone (even me) is feeling great. What more can a family ask for? We continue to pray for my healing and we know God is listening. What His plan is, we cannot know, but we do know He is listening. God bless you all. Thank you for the great guest book entries. They have definitely been uplifting! 25 Nov 02 (Day 88) There is no easy way to break this kind of news, so I will just blurt it out that I have relapsed with leukemia again. They found the "abnormal cells" in my bone marrow when they were doing my 80 day bone marrow biopsy. Needless to say it comes as a surprise to us and the doctors, especially since I am feeling so good. The first thing I would like to say is please don't start the pity party for the Tatums. When Nancy and the family and I came to Seattle, we decided that we were not going to put our trust in the medical community to heal me of leukemia. We have and we continue to put our trust in our Lord Jesus Christ. His plan in perfect and far superior to anything we or the doctors can come up with. So I ask you to please continue to email us and continue to sign our guest book, but please keep them spiritually uplifting. We see enough gloom and doom from our doctors who only trust what they can see. We look upon God, the doer of the impossible, for healing and comfort. Ok, for the specifics. They have lowered my immune suppressants to zero in hopes of having my new immune system rise up and start killing the leukemia cells. They think this will also trigger some graph versus host disease and I will have to deal with that when and if it comes along. They have also put me on a new medications called Hydroxyurea. This is a type of chemo that should help knock down the number of leukemia cells in my blood stream and in my marrow. One of the prayers we are praying to the Lord is for protection from the medical community from messing me up beyond repair while we wait for God's will to be done. Obviously, this changes everything as far as coming home. We will likely be up here through Christmas and possible beyond depending on how things go. My sister, Sara, and her family are planning a trip out here for New Year's and my brother, Scott, says he will visit sometime soon also. The truth is, we have no worries about when we leave here. The kids like their school, we have a nice apartment to live in, and Seattle isn't a bad place to live. Lastly, I am feeling great. We would appreciate all you prayer warriors out there to keep up the good work. We feel God's presence everyday. He has given us peace in this uncertain time. It is such a peaceful feeling to be able to truly turn this problem over to the Lord and then sit back and wait to see how He will take care of this problem. God bless you all. 15 Nov 02 (Day 78) I am very sorry to take so long to update the site. I have been getting a lot of emails asking how I am doing because my last post left everyone with the impression I was feeling ill. The biopsy came back negative and I have been feeling great every since the day they did the scope of my stomach. Thank you everyone who was praying for me. Once again the good Lord has delivered me from some unknown source of illness without the need for any medication or medical procedures. Another fine example of the power of prayer. The doctors here have started my "80 day" work up. This is the prelude to coming home. It involves thousands of blood test, x-rays, ct scans, pulmonary function test, heart test, etc., etc. They performed all these test when we first showed up and now they want to repeat them to see what this whole process has done to my poor body. All indications are that my systems are just as strong as the day I started the transplant process. We will have a more definitive answer in the next couple of weeks as I go through the tests. We had a nice visit from Greg Rackley this past week. He is flying for FedEx and he bid for a Seattle layover in order to see us. Nancy and I really enjoyed it. We sat around for a couple of hours and caught up on what is happening in the real world back home. Thank you Racko! The Kids, Nancy and I are all doing great. We are definitely ready to leave Seattle. It is not that we don't like it here, but being in a place like Mississippi where you can walk around without hitting a traffic light every block will be nice. Also, I think the kids are ready for some new friends. They have had all the brotherly and sisterly love they can stand in one two bedroom apartment for a while. If anyone has any good ideas how to get back a computer, crock pot, rice cooker, piles of books, etc. at an economical price, I am all ears. I think that is going to be our biggest challenge getting out of this place. God bless you all. Thank you so much for the prayers. My first guest book is full so I have started another one. You can still read the old entries, but you have to go to the new guest book to make an entry. 8 Nov 02 (Day 71) What a difference a week can make! Last week I was feeling better than I had felt in months. Then over about a week period I started get a little more nauseated day by day, I started losing my appetite and my temperature slowing started rising until it hit 101 on Wednesday Night. To top it all off, my white blood count, red blood and platelets all fell significantly over a three day period. So we called the Marrow Transplant Unit and they said to come in that night. They took some blood cultures, a urine sample, a chest x-ray, gave me some Tylenol and told me to come back Thursday morning. When I came in on Thursday, the doctors decided that I might be having some mild graph versus host disease (GvHD) in my stomach and order a esophago-gastroduodenoscopy (EGD) or more commonly referred to as a stomach scope. It was a completely painless procedure where they stick a camera down your throat, look at your stomach and clip off a small biopsy. We won't know the results until Monday, but everything went without a hitch. Funny thing though, I have been feeling better since Thursday night as my temperature has returned to normal and my appetite seems to be getting better. It may turn out that I had some type of bug and my immune system was able to fight it off. In any case, my counts are looking better and I am feeling better at this moment. I hope you will join Nancy and me in first thanking the Lord for me feeling better and for the smooth EGD. Also we want to ask God to continue healing my body as he has been doing for the last two months and to not let this very small setback turn into anything significant. If all goes well, we should be on our last month here in Seattle. I think the entire family has enjoyed Seattle, but everyone is definitely ready to leave. A two bedroom apartment with three teenagers can only work for so long.. God bless you all. 22 Oct 02 (Day 54) Sorry, but another boring report to give...praise the Lord! We are on day 54 today and that means we are past the halfway point to going home. I talked to one of my doctors today and he has contacted the Jackson VA to see what kind of follow-up care they can provide for me in Jackson. The University of Mississippi Medical Center (which is physically connected to the VA) has a bone marrow transplant center. So we are working to see if the VA would work in concert with them or would I need to use my private insurance to do have UMMC treat me. Right now all I know is the oncologist at the Jackson VA is named Dr. Khancer (pronounced cancer). Hmmm..... We have found a place to live in Jackson when we arrive. We have a lease on a three bedroom, fully furnished apartment at The Point in Ridgeland, MS. This will give us a chance to move right into a place and then take our time finding a home in Madison. We will be living there for three months. My sister-in-law, Leslie, went and checked the place out and her words were, "If I was going to live in an apartment, this is the place I would live". So we are looking forward to being there, hopefully the first week in December. The "Team in Training" skate marathon has been completed and Amy raised $7200.00 for the L&L Society. Her goal was $5000.00. She told me that some of the donations came from people she had never heard of who read this web page. You can read her thank you letter and see some pictures HERE. Thank you Amy for your hard work and thank you all for donating to this worthy cause. The Lord continues to watch out for the Tatums in Seattle. I'm feeling great, Nancy's doing great, the kids love their school (they are doing indoor rock climbing today). We are starting to look ahead to what is next. It reminds me of Jeremiah 29:11, "For I know the plans I have for you," declares the LORD , "plans to prosper you and not to harm you, plans to give you hope and a future." Thank you all for the great prayers, emails, guest book entries and all the other support you have provided us. We are really a blessed family. 12 Oct 02 (day 44) Things are pretty boring here in Seattle...and that is just the way we like it! There is no change from my last update except that I am getting a little stronger each day and my blood counts are getting a little better. Yesterday my white blood cells were up to 5.0 with an ANC of 3800 (both well inside the normal range). My platelets were 175 (normal). My red blood cells are the loafers. They are sitting at about 11.6 when 13.0 is the low side of normal. However, they seem to be climbing slowly each day. Visits with the doctors are very boring also. I walk in, take off my shirt, they all say, "looks good, any problems?". I say, "no" and they say, "see you in a few days". We are now down to visiting the clinic on Tuesdays and Fridays only. If I had more energy, I could be out looking for a job for the other five days. Of course I can't be around crowds either, so I would need a job where I can sleep all day and not be around anybody. Any offers? Please say prayers for the Staley family. Dan is in the hospital right now and is on day 2. Specifically pray for his new immune system to come in fast, for no graph versus host disease and for his leukemia to be gone forever. I know his family would be very gratefully. Nancy and I prayed often for the Lord to give me a perfect match, to bless my donor, and to let me have no graph versus host disease and to rid me of the leukemia forever. We cannot know all the plans God has for us, but I do know he is listening to our (and your) prayers. Please don't let up just because things are looking good. God bless you all. 3 Oct 02 (Day 35) Hi folks, everything is still going unbelievably outstanding. My blood work is looking good, no signs of any significant GvHD (graph versus host disease) and I am starting to regain a little of my energy back. The doctors think I am doing so well they gave me the day off today from coming into the hospital. If everything still looks good tomorrow, I will be off for the whole weekend and then we will only come back to see them on Monday, Wednesday and Friday. My white blood cells are up to 3.7 and my ANC is over 2500 (all of which is outstanding). They took a skin biopsy from the left side of my back early last week to see if there is any GvHD, but the results still haven't come back yet. I am off all IVs now and I am eating all I want of any kind of food I want. I still haven't braved anything spicy, but maybe in a week or so. I did go get a Quarter Pounder with cheese the other day and that is one of the things that convinced the dietitian I didn't need any more IV nutrition. Last night Nancy made me a BBQ sandwich with Cole slaw and after I wolfed it down I asked for another. They keep telling me to "eat, eat, eat, don't worry about your weight". However, I refuse to gain another forty pounds (like I did over the last year and a half), so we have started a walking program each afternoon. We are only walking around about a two city block area, but it has one monster hill on one side of it and just one round can really take it out of me. We walked two rounds two days ago and it felt like I had been to the gym for an hour. Hopefully this too will help me get some of my energy back over the long run. Nancy and the kids are still doing great. The kids seem to love the "Hutch" school more and more everyday. Last night they went to a book store to listen to best selling author Dave Egger (he wrote the book titled, "Heartbreaking Work of Staggering Genius"). I personally have never heard of him, but the kids said he was really "neat", plus he bought them all dinner, so he can't be too bad, huh? Today or tomorrow the kids are going rock climbing in an indoor park. I wish they had schools like this when I was a kid. We had a visit from our pastor at our adopted church up here in Seattle yesterday. Pastor Schatz has been very good about visiting with us. We really appreciate it. He knows we are only going to be up here for another couple of months, but he treats us like we have been in the congregation forever. He has invited us up to his house for Sunday dinner when I get a little more energy back and he wants us to come over for Thanksgiving with his family. Living in a big city is different than what we are used to in a lot of ways, but the people are the same...lots of people who really care and want to help out. Thank you all (again and again and again) for the prayers. I'm not really sure how many people have told me they or their church or their bible study are praying daily/weekly for us, but it must be in the thousands. All I can say is thank you and please keep them up. Nancy and I know the Lord is listening. Your guest book entries are a great source of strength to us also. Please continue to sign it, even if you signed it a hundred times before. God Bless you all. P.S. Did you notice that Hurricane Lili strengthened into a strong category four hurricane right before landfall and then weakened into a category 2 almost as fast before it hit Louisiana. At the National Hurricane Center they had no explanation. They said, "A VERY INTERESTING EVENT OCCURRED WITH LILI IN THE PAST 24 HOURS. IT INTENSIFIED RAPIDLY TO A STRONG CATEGORY FOUR HURRICANE AND WEAKENED TO A CATEGORY TWO AS FAST AS IT STRENGTHENED. THERE WILL BE MANY EXPLANATIONS AFTER THE FACT...AND PERHAPS MANY PHD DISSERTATIONS. I AM GLAD THERE WILL BE SOME. THE TRUTH IS THAT NOBODY WAS ABLE TO PREDICT THESE SUDDEN CHANGES IN INTENSITY." Of course no one in any of those dissertations will ever give credit to all the praying that has been going on for the last few days. You don't have to look very far to see the power of God at work in our lives every day...we just have to open our eyes. 26 Sep 02 (Day 28) Hello from our apartment in Seattle!! I was released from the hospital yesterday and I am now an out-patient at the VA hospital. Basically what that means is that we all get up each morning around 0615, everybody gets ready for their day and then we drive the kids to school and from there Nancy takes me to the VA Hospital for my daily appointment. At the VA, they draw my blood, take my vitals and then I sit around waiting for the lab results and to talk to the doctors. If everything is looking good (like it was today) they say, "keep up the good work" and I am free for the rest of the day. That usually means lunch, a nap, and then Nancy goes and picks the kids up at school in the afternoon and we sit around entertaining ourselves with homework, computers and TV. I am really doing very well for this stage of the game. All of my doctors are very pleased with how well I have taking to this new immune system. Of course, we stay here until at least day 100 because there is always something lurching in the background waiting to shake things up. But we feel confident the Lord is watching over us. The evidence is very clear! My blood counts are really doing great. My white blood count is 3.2 (almost normal), hemoglobin is 12.4 (only .6 below normal) and my platelets are in the normal range at 190. This is the highest my platelets have been in a long time. The man who gave me the gift of his stem cells must be one healthy dude! So far I have not developed any signs of graph versus host disease (GvHD). Of course it is still early in the game and they are watching my skin and my blood work very carefully to see if the new immune system is going to decide to turn on me anytime soon. The first 100 days are the critical ones. If I can make it through those with minimal problems, the chances of getting any serious GvHD is very much reduced. I am back to eating very lightly each day. My mouth is still tender, but it gets better everyday. I don't look at food and go, "ugh" anymore, but I still can't eat anything that isn't smooth (I like oatmeal, macaroni and cheese, ramen noodles, etc). Since I'm not taking in a lot of calories, I have to hook up a bag of Total Body Nutrition (TBN) each night and run it through my Hickman while I sleep. It provides me with about 2000 calories a day of liquid nutrition. When I get to where I am eating 1000 calories a day, they will cut it in half and when I get to 2000 a day, they will stop it. I hope that will happen within the next two weeks. The dietitian keeps telling me I am well ahead of the ball game right now. Well, that is it for now. Thank you so much for all the guest book entries and the emails. I'm trying to get back into the email answering mode. If I missed one of yours, send me another and I will answer it. The Lord has shown Himself to us so powerfully over the last month. He never left my side during that entire hospital stay. Please keep the prayers coming. He is listening!!! God Bless you all. 20 Sep 02 (Day 22) Hi, folk. This will be a very short update. Praise the Lord for your prayers and intercession, for I now have a new immune system (in it's baby form however). For the last two weeks, I have been in a narcotic half sleep/half wake state to keep the pain from my mouth and throat under control. When you need that stuff it is truly a gift from God, but when it is time to come off, it is time to come off. This is the first time in two weeks I have been able to look at the computer for longer than about 2 minutes. Nancy and Keeley have been sick for the last week or so, so I haven't seen their smiling faces around for a while. They have done some throat cultures on her to see if she can start coming back on Sunday or Monday. Of course, they are telling me I may be released back to the apartment around Monday. That would be great! The kids are loving the Hutch school. Not a lot of classroom time, but lots of field trips and such. Well, I have hit my limit again. Please keep the prayers and guest book signatures coming. I am sorry, but my email account was temporarily closed since it was inactive for so long with some many mails coming through. We still get the mails, but it is impossible to respond to all of them right now. God bless you all! 8 Sep 02 (Day 10) Hi everybody. I am happy to be typing my own update today. The mouth sores that they said, "will be here any day now" finally arrived on Wednesday. When my absolute neutrafil count (the VA calls it "absolute granulocyte count " ) hit zero, the mouth sores were only about a day behind. Usually when these things show up, only my new immune system will cause them to go away. Since that is still at least a week away, things were looking pretty bleak for my mouth. They put me on a continuous IV of Morphine. This pump infuses morphine 24 hours a day and I can hit a button and give my system a jolt of additional morphine. Right now I am on 2.5mg/hour continuous and 2.0 mg/button push. At one point this week the pain was almost too much to bear. One side of my mouth swelled up to about 5 times it's normal size. I couldn't swallow and couldn't sleep. However, after much praying (and fasting, but hey, I can't eat anyway) my mouth sores started to improve two days ago and they are behaving very well right now. I can swallow pills again and I can drink water. Praise the Lord!! Nothing much has changed on the transplant side of the house. I started running a fever last night and they have put me on some new antibiotics. I am sitting around waiting on my new immune system to make its debut which may happen between day 12-24. Some of my liver function test have elevated over the last few days, but the doctors said they are not too concerned about anything right now since I am doing good. Nancy has all the kids enrolled in "The Hutch" school. It looks like they will be enjoying this type of school work. They only go to school 4 days a week and only full days on Tuesday-Thursday. I am sure I have left a lot out. The morphine does make me loopy. I will have Nancy do the next update. I am having a hard time just reading back over this short thing. God bless you all and please, keep those prayers coming. 1 Sep 02 (Day 3) Hi - this is Nancy - I'm writing Ken's update this time. He is doing very well, but he is very, very tired. He doesn't have any appetite but that's ok because he is getting his nutrition through his Hickman. They have already started giving him methotrexate which he gets on days 1, 3, 6, and 11. This is to prevent him from getting raging Graft vs Host Disease. He hasn't developed any of the dreaded mouth sores yet but his nurses all tell him it is just a matter of time. They said it could be so bad that he will have to be on a continuous infusion of morphine for a couple of weeks. Please pray that he does not get those sores to that extent. We watched the Oregon Ducks trounce Mississippi State on Fox Sports Net here at the hospital yesterday. It was not fun. Then the kids and I went to church this morning and the Pastor put on a Oregon Duck hat and even blew a duck call. He never expected to have any MSU fans in his congregation, I guess. I told him after the service that he had rubbed salt into the wound! The kids register for school on Wednesday and start on the next Monday. They are hoping to meet some other kids their age there. There is a possibility that they could be the only kids enrolled in the high school. I hope that is not the case. Thank you for all your prayers and emails... Ken apologizes that he is not answering right now - he just doesn't have the energy. God bless all of you - Love, Nancy 30 Aug 02 (Day 1) Happy Birthday for the third time to me! I was born of my mother on 26 Jun 59, I was again through Jesus Christ on 13 Dec 97 and now I have been born again with a new immune system as of 29 Aug 02. Everything went without a hitch last night. The two bags of stem cells from my hero the donor arrived in Seattle about 2030. After being processed at the Hutch and here at the VA, I had them both infused in me by 2345. Nancy, Ron, Keeley and Steven were all here. It was quite the event, then everyone went home and went to bed. I know we over use the word hero in this country, but by my definition, "one who goes above and beyond the call of duty to help out another with little regard to his own life or health" is a hero. And I think a person who is willing to undergo unnecessary medical treatments and procedures to help out another person they have never met is awesome. So I say thank you Lord for this person and may You bless him for his unselfishness. I look forward to meeting him in a year. The only thing I know about him is that he is a 23 year old male, CMV negative with O positive blood. The rest will have to wait. As for me, I am feeling great. The three days of total body irradiation went relatively easy. I have to admit by the sixth session on the third day I was tired (that was yesterday). But I woke up today feeling very well. Of course, my blood counts from my old immune system still have not bottomed out and the new immune system won't start back up for another couple of weeks, so I could be in for some rather "bad" days. But I am celebrating good health at this very moment. They started me on the Cyclosporine about three days ago. This is one of the main drugs used to suppress my new immune system so that it doesn't start attacking my organs when it "comes alive" in a few weeks. They give it to me in an IV mixture of fat emulsion (it looks like a big bottle of milk). The side effects so far have been that my whole body feels flush and hot, yet I have a normal temperature. Also, when I touch something with my fingertips, everything feels like it is about 200 degrees. I have beren overwhelmed by the number of emails and guest book entries. There is no way I will be able to keep up with all the emails, but please know I read them all and they have uplifted mine and the Family's spirits very much. That is about all from here. Steven and I are looking forward to watching Mississippi State whoop-up on Oregon on TV tomorrow. Thank you all for your prayers. God is great! He has shown us so much through this tribulation. I spent 37 years running from the Lord and now I have spend the last year and a half just trying to keep up with him. God bless you all. 27 Aug 02 (Day -2) Well the party is definitely over. I hardly had any side effects from six rounds of intensive chemotherapy over the last year and a half. That all came crumbling down with just one dose of the Cytoxan. Add another dose on two nights ago and things only got worst. I have been feeling between queasy and nauseous for the last 48 hours. Although I have only been actively sick twice, the rest of the time I have felt like I was on a small boat out in the middle of the Gulf with ten foot swells slowly rolling by. All I have eaten in three days is one piece of toast, one piece of chicken and a carton of milk and orange juice. Add in a Foley catheter and things couldn't be better...not. Fortunately, things are better now. The catheter is gone, the chemo is over and I have had a day off from everything. I mostly slept over the last 48 hours. Nancy has been here to help me through the tough times and she has brought the kids by when I was feeling semi-ok. (they mostly saw me sleep). God is seeing me through this and I pray he will allow me to go through the radiation treatment which starts today with a little more ease. I will be getting the radiation twice a day for the next three days followed by the transplant on Thursday night. Thank you everyone who has been signing my guest book and sending me emails. If I don't respond back to the email, please understand it is because I am not feeling well. Some of you have asked me what they can specifically pray. Any prayer is needed and we are thankful for them all. Nancy and I are praying specifically for: The nausea to end Minimal side effects from the total body radiation (both short term and long term) For all the leukemia cells to be killed by the chemo and radiation Blessings on my unknown donor That his stem cells will like my body but hate any leftover leukemia That Nancy and the kids will be protected and watched over during this time Thank you very much, and my God bless you all. 23 Aug 02 (Day -6) We had the "big" conference with the doctors today and they told us all the things that can go bad during a MUD BMT. After they told us all the possible side effects, we signed the consents to have the procedure done. Nancy and I have been praying for the Lord to make our path a little clearer. With me feeling so good, I asked if He could give me a clear path to follow. Well, the answer came back crystal clear when the doctors told me that the leukemia is already starting to come back. I have 7% leukemia blast in my bone marrow (less than 5% is considered to be "in remission"). After consulting with other doctors, they decided I am beginning to relapse and the best course of action is to press full steam ahead with the transplant. I told Nancy in the car on the way back that the Lord could not have been any clearer. You may have noticed the "Day -6" on the top of the page. This is the way they do transplants around the world. I will have the chemotherapy (Cyclophosphamide at 60mg/kg of body weight) on day -5 and day -4. Then I will be allowed to rest on day-3 followed by total body radiation (200 cGy per day) on day -2, day -1 and day 0. Day 1 will start the day after the transplant. The first 100 days are the most critical. The chemo will be given in a single dose each day and take about an hour to transfuse. The radiation will be given twice a day for three days. They will zap my front side for 15 minutes and then my back side for 15 minutes at each session. Each 15 minute zap will be 100 cGy worth of radiation for a total of 1200 cGy. Side effects for both chemo and radiation are nausea, mucositis, fatigue, hair loss, fever and infection. The Cyclophosphamide, also known as Cytoxan, has a nasty side effect of causing the bladder to bleed. Because of this, I will be the lucky recipient of a Foley Catheter. They will used this to irrigate the bladder during the chemo. I get to have this thing with me until 24 hours after the last chemo is infused (about 3 days). They told me today that I am now CMV positive. I'm not sure how that happened since I was CMV negative the last time it was checked and I haven't had any blood transfusions since. I am going to ask them to check it again, but nevertheless, the donor is CMV negative. A good friend of mine, Amy Tippett, is raising money for the Leukemia and Lymphoma Society in the "Athens to Atlanta Road Skate". They will be in-line skating 86 miles on 6 Oct 2002. You may remember the Team in Training fundraiser that Duke and Nicole did last year where they both raised a lot of money for the Society. Amy has made me her honorary teammate for this event and is looking to raise at least $5000.00. If you are interested in helping out, please click HERE or on the link on the main page. They really are close to finding a cure for these horrible diseases and the money is put to good use for research and for helping out poorer families who can't afford transplants and other treatments. That's about it from Seattle. The Lord has been very, very good to the Tatums. I am feeling good, Nancy and the kids like it here, I have no financial worries whatsoever and I am receiving the best medical care available. Jesus meant it when he said, "Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid" (John 14:27). God bless you all and please keep the prayers coming. 20 Aug 02 My schedule is starting to unfold as I continue with the preparation for the BMT. Yesterday I had my consultation with the radiologist who will perform the total body irradiation (TBI). They went over the reasons for the TBI and the short and long term potential side effects of radiation exposure at this level. I will be receiving about 1200 centigrays (cGy) of radiation spread over 6 sessions (twice a day for three days). A standard chest x-ray exposes your skin to about .3 cGy of radiation and a CT scan of your entire body exposes your skin to about 3 cGy of radiation. So, I will be receiving about 400 CT scans or about 4000 chest x-ray worth of radiation exposure to all of the skin on my entire body over a three day period. The major side effect of this radiation is the development of cataracts of one or both eyes within 2-5 years after the procedure (30-35% chance). The risk of developing another cancer due to the radiation is actually pretty low according to the statistics (abut 1% chance). If you click HERE, you can see what the set-up looks like for receiving the TBI. The plan is for me to be admitted to the hospital on Satuday, 24 Aug 02 to start the chemotherapy. The agent they will be using is called cytoxan. I think I get it for three days, but I need to comfirm that with my doctors. After the cytoxan, I will begin the TBI for three days and then the transplant on the 29th (probably late at night). On the lighter side, Ron, Steven and I went to see the Mariners play the Yankees at Safeco Stadium on Saturday. It was the first time the boys had ever been to a Major League Baseball game. Unfortunately, the Mariners lost, but we did get to see the Yankees hit two home runs into our section of the bleachers. Of course, Steven is a Yankees fan, so he thought it was a great game. Also, the entire family went to the Zoo on Friday. Seattle has a great Zoo. All of the animals are placed in there own natural habitat. We found a church we like about a mile and a half from our house. Trinity Lutheran Church, a Missouri Synod church like the one back home, was first built in 1901. It is a relatively small church compared to our last one. The people there were extremely friendly and the sermon of the day was straight out of the Bible. Unfortunately, I probably won't be going back for a while until after the transplant, but hopefully the rest of the family will be able to attend on a regular basis while I am in the hospital. That's about it for now. My other Air Force comrades with leukemia are doing well. Dan Staley has just been medically retired and will be coming up here in September for an October MUD BMT. Greg Smith is as healthy as a horse and working to get back on flying status in the AC-130. I haven't heard from Mike Dunn. Hopefully he will drop me a line (hint, hint) and give me an update soon. Please keep the prayers coming for all of us. They are doing exactly what we know they will do....anything and everything! God bless you all. 13 Aug 02 Things are still running smoothly here. We are enjoying our "free" time before I start the real procedures. I have been doing numerous test all over the hospital. I have put a new section on the web page that shows the blow by blow of everything I have been doing to prepare for the transplant. If you would like to see it, click HERE. Ron, Steven and I went to a pre-season Seattle Seahawks game on Saturday night. It was the first game ever played in the new stadium. It was fun, but the Seahawks were blown out by the Colts 28-10. I was also taken to the cleaners ($132.00 for three tickets and $40.00 for hotdogs and cokes). We are still trying to figure out the downtown bus system here. We had no problem getting to the game, but coming home at 2300 was a little sporty. We eventually called Nancy to come pick us up in downtown Seattle after 30 buses with the wrong numbers on them passed us by. Don't even ask me about the people we ran into at midnight in downtown Seattle waiting at bus stops. Suffice to say, it was a new experience. We are praising the Lord for my good bone marrow biopsy report. The doctors told me the preliminary results showed no problems. Tomorrow I will have a Hickman catheter placed in my chest. Other than that, my schedule seems to be slowing down until I get measured for the total body radiation (TBI) on the 19th followed by the actual TBI starting on the 22nd. The TBI is the point of no return. Everything up until then is reversible, but once I start the TBI, I am committed to the transplant (not like I have a real choice in the matter). We are also thanking the Lord for all the test results that have been coming back. According to the VA, my body has not sustained any damage from any of the six rounds of intense chemotherapy I have endured over the last 18 months. I am as healthy as a horse and still finding it hard to believe I need a BMT. We all went down to Alki Beach tonight for some fish and chips. After dinner we walked along the boardwalk on the Puget Sound. It was really a sight to behold. You can see the mountains, the Sound, the Space Needle, the downtown skyline and both stadiums along the walk. There are no bugs (unlike down south) and the temperature was around 75 degrees with a cool breeze. I am beginning to understand why so many people love it up here. Our address up here is 303 10th Street, Apartment 609, Seattle, WA, 98122. Please keep signing the guest book. It helps keep us in touch with the world we left behind. God Bless you all. 9 Aug 02 We have arrived in Seattle! We are thanking the Lord for a smooth trip and transition into Seattle. We left Jackson, MS at 0605 CDT and arrived here at 1300 PDT. By 1700 we had our rental car and were in our apartment. The apartment is very, very nice. It is a two bedroom on the sixth floor of a six story apartment building. From the balcony in the living room you can see Mt. Rainier looking southeast and the Space Needle looking Northwest. The weather is great. The high today was a toasty 77 degrees with no clouds in the sky. We are living in downtown Seattle about a mile from where the Seahawks and the Mariners play ball. My first impression of the Bone Marrow Unit (BMU) at the VA hospital is great. When Nancy and I showed up this morning they were ready for us and had our day (and next two weeks) all planned out. We met the team of nurses, doctors, pharmacists, social workers and psychologist today and several of the other patients and their family members. All of the current patients did nothing but rave about the care they are receiving here. Nancy and I are very happy with everything we have seen so far. Today I had thirty vials of blood drawn (I'm not kidding30 vials), a chest x-ray, an EKG, nasal and throat cultures, a urinalysis and couple of other odds and ends test. Tomorrow I have a CT Scan, Dental exam, physical exam and a bone marrow aspirate scheduled. Saturday and Sunday we will be free to explore Seattle then back to the grind on Monday. Nancy and the kids are doing great. The kids are already bored since they were cooped up in the apartment all day, but we will find things to do this weekend. Their school doesn't start until 9 Sep. It is going to take a little while to get used to the new environment, but the VA really has made this transition much easier than I thought it would be. Please keep us in your prayers. Specifically, we are praying for the next two weeks to continue to go smoothly with no adverse surprises. God Bless you all. |
Mach's Trip through a MUD BMT (matched unrelated donor bone marrow transplant) |
There are three journals: Bone Marrow Transplant Click on any of the links above to go to the other journals |
