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3 Aug 02 "Houston, we are go for transplant....let the countdown begin". I talked to the VA in Seattle yesterday. My donor has agreed to donate, passed his physical and we have set a date of 29 Aug 02 for my BMT. I guess I really need to quit calling it a BMT since the donor has agreed to donate peripheral stem cells (PSC), so technically I am having a PSCT (T for transplant). PSCs are better than bone marrow for me and harder on the donor. For me, it means a faster engraphment of the new immune system...up to a week earlier (two weeks vs. three weeks for bone marrow). You may be asking, "what are stem cells?". Stem Cells are produced by the body and have the ability to become different types of cells. Scientist don't really know how they work, they only know that when the body needs red blood, the stem cells become red blood cells. When the body needs platelets, the stem cells become platelets. When the body needs white blood cells...well, you get the picture. For the donor, it requires a lot more time and preparation. If he were giving bone marrow, they would bring him in on the 29th of August, put him to sleep, and pull bone marrow out of his rear pelvis bone with a needle in four to six spots. This is the same procedure I endure every time they do a bone marrow aspiration for a bone marrow biopsy, only they don't put me to sleep and they only stick me once (sometimes twice). For a PSCT, the donor takes Neupogen shots for a few days before the collection. This is the same drug I take when I am neutrapenic (no immune system). Neupogen forces a neutrapenic patient to produce stem cells that become white blood cells. A healthy person already has all the white blood cells he needs, so when he takes Neupogen it causes the body to produce an excess of stem cells and they flow out of the bone marrow and into the blood stream. Then the donor comes to the hospital for one to three days and is hooked up to a machine that takes the stem cells out of his blood and then puts the blood back into him. This procedure takes about three hours and depending on how many cells they collect, it could take up to three days to collect enough for a transplant. As far as the transplant is concerned, it is the same for a BMT or a PSCT. They simply hook up the bag of cells to my Hickman catheter and it infuses exactly like a blood transfusion. Eventually they find their way into the bone and start producing the new bone marrow. Everyone who has ever had one tells me that the actual transplant (the infusion) is anti-climatic. It is the next 100 days that all the excitement happens. I will write about that later. In other exciting news, tonight is our last night in Niceville. The house is empty and all of our stuff is in storage. We will be pulling out of the driveway after church tomorrow and heading to Madison, MS for three days. I truly have not been worried about anything that has happened or is about to happen. We have put our trust in the Lord and He has shown us why that is the smart way to live. Everything has been falling in place as if their were a master coordinator planning it all (and there is!). As the Bible says in 2 Samuel 22:32, "As for God, His way is perfect; The word of the LORD is proven; He is a shield to all who trust in Him.". Amen! God Bless you all. 26 Jul 02 We sold our house! That same couple I wrote about last time, who was interested in our house, made an offer, we countered, and they accepted. Everybody is happy with the sale. The new owner came by with the housing inspector and told me he is remodeling the kitchen, all the bathrooms and putting new floors throughout the house. I would love to come back some day and see what they do. Nancy and I are thanking the Lord for taking this worry away from us as we move to Seattle. Not having a house and all the bills associated with it will save us over $2000.00 a month. Since the VA gives us our apartment and all the utilities for free, we should have no money problems (even on retirement pay) while we are in Seattle. The VA is paying for Nancy and me to fly to Seattle, but they don't pay for the kids. However, I was able to find three round trip tickets from Jackson to Seattle for $220.00 each. I couldn't believe the prices. The last time I check (back in May) the prices were over $400.00 each. We also found a mid-size rental car for $395.00 a month. That is about the same price as a standard car payment. This company has a deal with the five cancer hospitals in Seattle to provide cars for long-term care patients. We all had a nice visit with my sister (Sara) and her family in Gulf Shores, Alabama this week. Johnny cooked us fresh Amberjack and Snapper he had caught a few days earlier and, of course, it was great. We all had a good time. Next stop is Jackson to visit with the rest of my family and Nancy's family before we jump on the plane for Seattle. I want to apologize to everyone for not putting out invitations to our retirement/going away party. It was put together on very short notice since no one (including us and the VA) knew when we would be leaving the local area. I have received many emails from friends who wanted to attend, but didn't know anything about it. The squadron did an outstanding job working on such short notice and there was no way invitations could have be sent out and received before the party. I am feeling great. Other than weighing a hefty 245 pounds, you would never know I had ever been ill. I keep asking the Lord if I really need to go get a bone marrow transplant and I keeping getting this feeling ( I can't explain it with words) that I am supposed to go to Seattle for this treatment for more reasons than just to cure leukemia. Don't ask me to explain it. Nancy and I are simply trusting in the Lord. It may not become obvious to us until much later. Please keep us in your prayers and God bless you all. 18 Jul 02 Finally we have some movement in the VA bureaucracy! Although the package is still in D.C. awaiting approval, the Seattle VA has scheduled me to start my transplant procedures on 8 Aug 02. We will all fly up there on 7 Aug. The VA will be providing us with our living quarters and of course they will be footing all of the medical bills. We will be responsible for our personnel spending while we are up there. The actual transplant date has not been set yet, but it will probably be about two weeks after we show in Seattle. If the transplant happens on or about 22 Aug, then we will probably be up in Seattle until around the first of December. We are planning on moving out of our house on 29, 30 and 31 July. All of our "stuff" will be put into storage until we finish with the transplant. After we move out of the house, we are going to move up to Madison, MS for a few days to get the kids enrolled in school. They will be going to the "Hutch" school in Seattle, but this school works with their home school so they can follow the same curriculum as the Madison schools. They will even use the same text books as the school in Madison. That way, when we move back to Madison, they will be at the same place as all the other students in Mississippi. As far as the house is concerned, we have been showing it to a lot of prospective buyers. There appears to be one family very interested in the house. They are coming back tomorrow for another look and have asked a lot of question about the house. They also want to have a home inspector come out before they make a bid. We told them that would be fine. Sounds to me like they are really interested in our house. The 85th TES gave Nancy and me a going away party/retirement party last Friday. It was awesome. I couldn't believe how many people came out to say goodbye to us. They gave us lots of going away mementos and they even had my jet, F-15C tail 850126, sitting out in front of the squadron with my name still painted on the canopy sill. I want to say a special thank you to E.T. Murphy and Kooler Krumm for making this party happen on such a short notice. I know all of the "Skulls" were involved in the setting up and taking down of the party and I just want to say, "Thank you" all. Nancy and I will always think of the Skulls as the best squadron in the USAF. God has been good to the Tatum family. We have been passing all of our worries onto Him and he has giving us back peace of mind. Thank you all for your prayers. I am feeling great. It is hard to believe I need a bone marrow transplant. As we get closer to the transplant, I will start updated this site more often to keep everyone informed on what is going on. God Bless you all. 11 Jul 02 Happy 20th anniversary to Nancy and me (10 Jul). It is hard to believe that we have been married for 20 years. Marrying Nancy is by far the best decision this side of heaven that I have ever made. I still haven't heard anything worth repeating from the VA. I have talked to the center in Washington and the one in Biloxi and everything appears to be ready to go. I had to go to Biloxi last Wednesday for a bunch of test. They did a heart echo, EKG, pulmonary test, kidney test, liver test, chest x-ray and I even had to see a shrink. Then I had to have a TB test and a dental exam. The reason for all the tests is to make sure I am physically and mentally ready for the bone marrow transplant. If you want to read a little of what it will be like to have a bone marrow transplant, click here. His name is Andrew and he is on day seven of the exact same procedure I will be going through. He and his wife, Susan, are very loyal followers of Christ as you will see in his pages. My squadron is giving me a going away party tomorrow at the new squadron building. I have been keeping to myself over the last few months since the relapse, so it will be good to see everybody again. I hope they recognize me, I have gained about 30 pounds due to the steroids and just being inactive for the last three months. I have passed many people face-to-face over the last couple of week that didn't even recognize me until I said something. The bald head doesn't help much either. I found the web site of a sixteen year old girl who is in remission from leukemia. She has such a strong faith in Jesus and is able to clearly articulate it through her writings. If you would like to see one of Deiah's letters, click here. Keep those prayers coming. If you haven't signed my guest book lately, please sign it again. Your messages really help keep our spirits up. As it is said in Proverbs, "The spirit of a man will sustain him in sickness, But who can bear a broken spirit?" God Bless you all. 1 July 02 The trip to Lake Martin was a complete success. The kids had a great time, I visited with both of my brothers and sister along with their entire families. Also my Aunt Julie, Aunt Mary Alice and my cousin Debra came by to visit with all of us one day. It was a great trip and I didn't get sunburned! I received an email from the VA in Seattle telling me that I should be hearing from them this week concerning when I should show up for the transplant. They said they had all the paperwork in order and they just needed for one of their oncologist to talk to the Biloxi VA and then everything should be set. We have the appraisal back for our house. We were very surprised at the final figure. If we can sell the house for close to what it appraised, then this will have turned out to be a very good investment for four years. Of course, asking ain't getting. My father always told me something is only worth what another person is willing to pay for it. I had my 43rd birthday up at the lake last week. Looked like a wildfire raging on top of that cake. Also, today is my first day of retirement. Funny, I don't feel any different than I did yesterday. Nancy and I are continuing to place our faith in the Lord. We have lots of things we could be worrying about, but we believe Jesus when he said, "Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble". God bless you all. 20 Jun 02 With the Lord's help, we are back from Keesler for good. Ron, Steven and I drove back to Keesler on Monday and I had a bone marrow biopsy performed on me and had my Hickman catheter removed. Both procedures went without a hitch. A lot of people talk about how painful a bone marrow biopsy is, but I don't see why they say it is all that painful. I have now had eight of them and yes, there is about a five second period (when they are sucking the fluid from the bones) that is rather painful. But after they finish that part, the rest is a breeze. As far as the Hickman being removed, the surgeon told me it was the easiest one he had ever removed. Both procedures were done under local anesthesia and the boys and I drove home as soon as they were complete. Dr. Dice called me yesterday and told me the results of my biopsy showed 0% blast (i.e. no leukemia). So, I am still in complete remission and ready for the bone marrow transplant. Thank you Lord! I have been running around like a chicken with its head cut off trying to get all the paperwork needed to retire. I finally finished the bulk of it yesterday and I have an appointment Friday morning to out process. After that, I will be officially retired on 1 July. We are all getting exited about the family reunion next week at Lake Martin. Everyone always has a great time and we are all looking forward to a little R&R before we make the trek to Seattle. Lastly, Nancy and I have decided to sell our house. Our plan is to move to Mississippi after the transplant. So, if anyone knows of anyone looking for a 2600 square foot, four bedroom house, with a pool on a lake, tell them to give us a call. I'm still waiting on the appraisal to see how much we are going to ask for it. Hopefully we will be able to sell it fast. Thank you all for the prayers for my family and me. God's presence has been felt everyday. He is showering us with more blessing than I ever imagined possible. God Bless you all. 16 Jun 02 Happy Father's Day to all us fathers! Nancy and I made it back to Niceville yesterday in time for Father's Day. Unfortunately, I have to be back at Keesler tomorrow to have a bone marrow biopsy performed and hopefully to have my Hickman catheter removed. Grandmama went home with Uncle Warren yesterday after staying with the kids for almost a month. I may only be at Keesler for the day or maybe just overnight. Ron is going to drive over there with me in case I need someone to drive me back after the two procedures. After I told Steven that we are going to stop at the Original Oyster House Restaurant for dinner on the way back, he decided he wanted to go also. They have narrowed the search down to two donors for the bone marrow transplant. One is a 23 year old man with O positive blood. The other is a 22 year old man with B positive blood. Both of them are perfect matches for my bone marrow HLA type. They decided to go with the O positive as the primary (since I have O negative blood) and the B positive as the backup. Everything is now waiting for the VA to say, "Go" to begin the countdown for the transplant. When the VA gives the go ahead, it will take about five weeks to make it all happen. That means we might be leaving for Seattle the first week of July with a transplant around 25 July. They want me up there two to three weeks before the transplant to run a ton of test to make sure my body can handle the procedure. Once again the Lord has made the timing of everything work out perfectly. Our annual family reunion at Lake Martin, Alabama is coming up next week. Nancy and I missed it last year while I was doing a round of chemotherapy (the kids did get to go), but we are going to make it this year. The timing couldn't have worked out better. I get a week at home to recover from the last round of chemo and then we will be leaving for Seattle a week or so after the reunion. Thank you all for the guest book signings, emails and cards. The prayers and the encouragements are really helping a lot. Things couldn't not be going any better for the Tatum family right now and I see no reason to think it won't continue this way. Thank you Lord! 10 Jun 02 Unfortunately, we didn't get to go home this weekend, however, I am no longer neutrapenic (I have an immune system). I feel almost certain we will be heading home by this weekend. Everything went perfect on this last round of chemo. Thank you Lord, no side effects at all. I was neutrapenic for about two weeks, so it was nice to be able to leave the TLF and not worry about being around other people. I'm looking forward to putting Keesler AFB in my rear view mirror (again). Next stop; hopefully; Seattle. I'll update more when I get more details of when we leave for Seattle. Until then, God Bless you all. 4 Jun 02 Well, there is really not a lot to report, but I thought I would update the site anyway. No news is good news usually. I have been neutrapenic (no immune system) for one week and will probably stay that way until at least this weekend. That means avoiding people, eating only cooked food and keeping my Hickman catheter really clean. So far I have received two units of whole blood and three transfusions of platelets. I have had absolutely no problems whatsoever and we are looking forward to getting back to the kids maybe by this weekend. I would like to tell you about a 15 year old boy here at Keesler who has leukemia (he is from the Ft Walton area also). He has been here at Keesler for about three months. When we left here in April, Brian was not expected to live. His heart had been badly damaged from lack of red blood, he had pneumonia and a fungal infection, was on a respirator and in the intensive care unit. Everyone told his mother that he would not survive. However, his mother had a stronger belief in God that she did in the doctors. She knew it would take a miracle, but she knew that the Lord performs miracles all the time. While the doctors and her family told her to prepare for Brian's death she continued to pray. We heard daily reports about how he was sinking further and further away and that they wanted to take him off the ventilator. She told Nancy she would not allow them to take him off the ventilator until God released her from praying for his healing. As you may have guessed, the doctors were wrong and the mother was right. God did provide the miracle and we saw Brian at the hospital last week. He is now out of ICU and is able to take passes out of the hospital. He just finished his second round of chemotherapy for the leukemia (they couldn't even administer it due to his heart last month). I have no idea what God has planned for Brian and his family, but for now He has plans for him to live. For the rest of us, it has been another example of how God does not conform to the physical world. What was impossible for the doctors was very possible for God. When the secular world tells us what is impossible, God shows us that all is possible with Him. God bless you all and thank you for providing me and my family the same connection Brian's mother provided for him....your prayers. 25 May 02 It has been one year and two weeks since I found out I had leukemia. Last night I finished up my sixth round of chemotherapy in all that time. So far, no problems with this treatment. I will be leaving the hospital this morning for the temporary living facilities (TLFs) to watch my immune system disappear for a few weeks and then recover. It will be the standard hermit act of staying away from people as much as possible, going to the clinic everyday to see if I need blood or platelets and trying to keep clean so I don't pick up any infections. Nancy will turn the room into as much of a sterile environment as possible for me. Since I was receiving a lower dose of chemo this round, I was able to leave the hospital everyday this week at noon (after my morning chemo) and return at 2100 (for my evening chemo). Let me tell you, that made this stay the most pleasant of all! Any second out of the hospital is like a day in paradise. For those of you interested, I was receiving low doses of Mitoxantrone, VP16 and ARA-C in the morning and low doses of ARA-C at night. The "low dose" was about 2/3 what I received the last time I was here and the ARA-C was added at a dose of about 1/6 what it was when I was doing consolidation chemotherapy last fall. Remember, this treatment is for maintenance only to keep me in remission before the bone marrow transplant. Grandmama and the kids are doing great in Niceville. The kids are really helping out with the driving, cutting the yard, cleaning the pool, cleaning up after supper and even making supper sometimes. It has really been a blessing watching them step up to the challenge of this ordeal. When we talk to them on the phone, they are always cheerful and ready to help anyway they can. And of course Grandmama is something else. For her to continue to come down to Niceville and take care of the kids for a month at a time has been great. The peace of mind she brings to Nancy and me can't be described. We are truly a blessed family! We have another Air Force leukemia patient from the Fort Walton area here at Keesler. Lt Col Mike Dunn has been working at Hurlburt since the 9/11 attacks and was just diagnosed a short while ago. That now makes nine Air Force (active and dependents) from the area diagnosed with leukemia in the last year. I have heard there are several civilians who work at Eglin and Hurlburt who are in local hospitals with leukemia also. We are trying to track down the exact number. Maj Dan Staley found out this week he has no "perfect" donor matches in the bone marrow register. He is now weighing his options of continuing with chemo, having his own bone marrow extracted and returned to him in a autologous BMT or go for a near match (5/6) allogeneic BMT. TSgt Greg Smith is doing great back at Hurlburt. He received his three month checkup last week and there is no sign of leukemia. I ask you all to pray for these three men and their families (while you are praying for us also, of course). Each one of us is going through different stages of this disease, however, the power of God will see us all through if we will truly turn to him. Specifically pray that the Holy Spirit will move within each of us to call us fully to the Lord. God bless you all. 19 May 02 When I left Keesler AFB Medical Center on 18 Apr, I was supposed to be home for about 10 days. Well, 31 days later, we are finally (no kidding) heading back to Keesler for my next (and hopefully last) round of chemo before the bone marrow transplant. Uncle Warren showed up here today with Grandmama and we are all set to leave. Like I have said before, this will be a lower dose of chemo meant to keep me in remission . I talked to the Hutch in Seattle and they told me there are no active phase II/III clinical trials going on for my situation. Basically they told me my situation was too common and my prognosis was too good, so there really was no reason for me to do anything except the standard protocol for leukemia. This means I won't be going to the Hutch and will be going to the Puget Sound VA Center instead. That is ok with me. I have talk to several doctors and nurses who are not associated with the Puget Sound VA Center, but know about it and they all made the place sound like a good place to go. They run the same protocols as the Hutch and the doctors all did their residence work at the Hutch. Nancy and I have asked the Lord to lead us to the right place for the transplant and it is obvious he is closing and opening the right doors to lead us to the VA Center. There is not much more going on around here right now. I will update again after I finish my chemo next week. Please put/keep the Tatum family in your prayers. Specifically, ask the Lord to protect my children and Grandmama while they are here in Niceville and for Nancy and me to make it through this next round of chemo with no adverse side affects. Thank you and God Bless you all. 12 May 02 News Break...My doctor emailed me this morning. She wants me to stay home another week. She is out of town and doesn't want to have the other doctor give me the chemo with my blood levels so low. She says I wil get the chemo next Monday regardless of my counts after she gets back in town. I think this should be my last treatment for sure since I should be ready for my transplant by the time I recover from the next chemo treatment. 10 May 02 Although my platelets still are not at 100,000, my doctor wants me back at Keesler this Monday for my next treatment. She doesn't want me going too long between chemos and risk another relapse. So, Grandmama is on her way down and we are getting ready for another month of fun on the Mississippi coast. I received a letter from The Hutch in Seattle yesterday. It turns out that I have over 1000 6 of 6 matches for my bone marrow transplant. That's right....over 1000. I couldn't believe it when I read it, so I called them to confirm. Sure enough....over 1000. The lady at The Hutch says I have a very common HLA type. They have now narrowed the list down to 11 young men who are CMV negative (CMV is a virus that 50-80% of all adults have by the time they reach 40 years old. It can cause lots of problems for BMT patients). She said their experience is that out of 11 perfect matches, 7 would probably be available for donation. Nancy and I have been praying for a good match and it is apparent He is moving us in that direction. My retirement date has been set. I will be medically retired on 1 July 02. Since I am going TDY (temporary duty) to Keesler, I can't be on leave at the same time. Although I have over 90 days of leave saved up, by law I can only sell 60 days back to the Air Force. I will be using my 20 days of permissive TDY when I get back from Keesler and then I will be retired. That means I will lose 30 days of leave (which translate into $6,000.00). I am not too worried about it though. The Air Force has given me about a zillion days of convalescent leave over the last year and we have been treated very fairly by the entire military system. I will put in a waiver for losing the leave under circumstances beyond my control, but it will be considered a bonus if I get paid for it. Nancy and I went to our monthly Gideons camp meeting last night. It was really great seeing and fellowshipping with our fellow Gideons. I had been a member for a couple of months before I relapsed and have really missed the weekly Saturday morning meetings and the camp meetings. If you aren't familiar with the Gideons, you can click here to see what they (we) are all about. We still don't know if I will be getting my transplant at The Hutch or the Puget Sound VA Center, but the way the Lord has been guiding us over the last year, I'm not worrying about it. My newly learned (re-learned is more like it) skill of having patience and trusting the Lord is working great. No need to worry, the path will become apparent. God bless you all and keep those prayers coming. 03 May 02 Not much going on around here right now. My platelets today are at 70,000. Still not good enough for another dose of chemotherapy (my doctor wants 100,000), so I have to stay home another week. This is actually great news in another way also. Since it is taking my bone marrow so long to recover, it is quite possible this could be my last round of chemo before I head up to Washington (or wherever we are going) for the transplant. Nancy and I have been tossing around the idea of moving back to Jackson, Mississippi after the transplant. We would be near family and the University of Mississippi Medical Center has a bone marrow transplant Center in Jackson and they could do my follow-up treatments. There really is no place near Niceville, Florida that can handle the complications that can set in after a transplant. The nearest center is in Birmingham (3.5 hours away). Of course, we are doing and will do a lot of praying to see if this is where God is leading us. I am not going to make the same mistake and try and wrestle the controls away from Him again. We will be patient and the path will unfold in front of us. That's about it. Keep those prayers coming, Nancy and I feel them everyday. God Bless you all. 27 Apr 02 Darn...Darn...Darn! What can I say? My platelets are only at 51,000 and my doctor wants them to be at 100,000 before I do the next round of chemotherapy. Now I have to stay at home for at least another week (maybe two) before I get back to Keesler. Did I say, "Darn"? I have a new link on the main page that gives a lot of information about bone marrow transplants if you are interested. God Bless us all! 25 Apr 02 First of all, happy birthday to my 16 year old son Ron. He is going to get his driver's license tomorrow. That will be a big help for when we leave next week for Keesler because he will be able to "do the errands" for Grandmama instead of having to call friends and neighbors. He has already picked up the yard work chores now that he has leaned to drive the riding lawnmower and he is keeping the pool looking good. He is really a big help around here. My doctor sent me an email yesterday. The no-kidding-no-more-studies-final report on my bone marrow biopsy is back and....drum roll please....it showed no blast in my marrow...zero...nada. Let's see, it went from 13% to 7% to 2% to nothing without taking anymore chemo. All I know is: God is good. The cranium-nurse at the Keesler Oncology Clinic called yesterday and told me the Air Force is going to pay for the bone marrow donor search instead of waiting for the VA to do it after I am medically retired. This is great news since it means I won't have to lose any permissive TDY or leave (I have 89 days of leave and can only sell back 60 by law). If the Air Force hadn't come up with the money, I would either lose that extra 29 days of leave and 20 days of permissive TDY or wait until July to start the search for a donor. Neither was acceptable to me. This means I will keep a full Air Force pay check (minus my flight pay that stopped this month) for almost another three months. I found out this week that I still might make it to the Hutch (Fred Hutchinson Cancer Research Center in Seattle) instead of the Puget Sound VA Center. There is a program from the National Cancer Institute that helps people like me get into phase II and phase III clinical trials when your insurance won't pay for it. I should find out in the next couple of weeks if I am eligible for one of these trials. If I am, I can then be briefed on what the trial is all about, decide if I want to participate or choose to go to the Puget Sound VA Center instead. It opens up a lot more options for me and the clinical trial could be something I want to investigate. It looks like the transplant will not happen now until sometime in July. That is later than I thought, but with me being in remission, there is not as much need to hurry as before. What it will mean is probably two more rounds of chemo at Keesler before the transplant. As always, keep those prayers coming and God bless you all. 19 Apr 02 Remember last week when I found out I still had 13% blast in my bone marrow and I prayed and asked God to let me understand how prayers work? Well, I got the word today that I have 2% blast in my bone marrow now. Although I haven't had anymore chemo, it just kept coming down. You know what that means? I am in remission...again!!!! Also, it means I failed my "pray with no doubt and with faith" trial. Keep trusting, be patient, the Lord has a plan that will always beat mine. Will I ever learn? I start back with consolidation chemo on 29 Apr 02. Much lower doses than usual. This plan is just to keep me in remission until the transplant. God Bless you all. 18 Apr 02 I can't hardly believe it, but Nancy and I are back in Niceville!! We left Keesler yesterday and arrived home about 1900 last night. Let me tell you, after 22 days in the hospital (2 in ICU) and 10 days in the TLFs, it was nice to be home. The kids were all excited and so were we to see each other. Grandmama did an excellent job of keeping the kids, as usual. She is going to stay with us for a few days then Nancy's brother, Warren, is going to come down from Madison, MS and take her back home for some R&R. We don't get to stay long (only about 9 days), but I will take that over staying at Keesler any day. Once again, following the Lord and not trying to do it my way has been shown to me the best way (I may actually be getting it!). I had my bone marrow biopsy yesterday and my doctor's preliminary hack at it was that it looked better than the last one. She thinks I may be in remission, but I won't get the final word until tomorrow or Monday. I will hold off getting excited until I see the actual results. I did bring home an eye infection or something that is affecting my left eye only. It is swollen pretty good (or as we say down south, "it swoll up purty good), but nothing like when I showed up at Keesler, looking like Gary Kooney, a month ago. I have some eye drops and steroids I am taking to try and get rid of it. I have been avoiding visitors until this thing gets under control. Hopefully I will be going over to my old squadron and seeing friends again by this Monday or so. I was telling my mother-in-law (Grandmama) this morning, I have one bad thing going on in my life right now, but more blessings than I can count. Coming home last night made me feel like I just went over the one million blessing count. That one bad thing just seems to get smaller and smaller everyday. As usual, thank you again for all the prayers. Nancy and I send them back to all of you. God Bless you! 13 Apr 02 All is well in Biloxi, Ms. Some very strange things happened here over the last couple of days. My preliminary bone marrow biopsy (BMB) results came back and showed I still had 13% blast (leukemia) in my bone marrow. Very disappointing, to say the least, since this latest chemo was supposed to be the "strong" stuff. My doctor wanted me to start another round of chemo today with the prospects of being here for a least another month. Last night I was praying and telling God that I really don't understand prayers. Nancy and I prayed often that this latest chemo would put me in remission. As you know, there are many places in the Bible that say if you have faith and don't doubt, ask of the Lord and you will receive. Also it says when two Christians agree on anything, it will be done. I wasn't questioning God, I just asked for wisdom to understand what it means and how is prayer supposed to work. Well, I got a phone call from my doctor this morning and she said that the final results of the BMB actually showed only 7% blast in my marrow (still not remission but only 2% above what is considered remission) and that she wants me to stop my neupogen shots (the stuff that caused the bone marrow to produce extra white cells). She wants to do another BMB on Wednesday because it is possible the neupogen is masking a remission. No chemo, no hospitals, nothing (unless I need blood or platelets) until Wednesday. And, it is possible I am in remission. Nevertheless, the 7% vs. the 13% shows the chemo was effective on the leukemia and another round may put me in remission (if I'm not already). Now I'm not saying God answered my prayer because I asked the questions last night.....but I'm not saying He didn't. I'm saying, God says He will never give you more than you can handle and maybe last night He decided my plate was getting a little full and He lightened my load a little. And that He did do! Since I won't be going home to Niceville anytime soon, I think Nancy is going to go over and bring the kids back next Friday and have them spend the weekend over here with me. I haven't seen those guys in almost a month. I should not be neutrapenic and hopefully I will be an outpatient, so maybe we can do some eating out and going to the movies while they are here. Anything. I just want to see them. Keep those prayers coming. Greg and Dan are doing great. Dan is back at Hurlburt for a week (good BMB results) and is on track for his BMT with me in Seattle this summer. Greg should be getting ready to go back to Hurlburt for good. Pray that when he puts Keesler in his rear-view-mirror, it will be forever! 9 Apr 02 A lot has happened in only three days. First, today is the change of command ceremony for Lt Col Ken Stefanek to officially assume command of the 85TES. Stef really came through for me last summer and fall when he temporarily took the squadron while I was in chemo treatment. He has been my operations officer since I came back and it was announced in February that he would be my replacement when I was due to rotate this summer. There is no one who is better qualified or who deserves to command the Skulls more than Stef. I wish him Godspeed and a very successful tour as commander. Second, it looks like I will be medically retired within the next week. We just got to a point where trying to figure a way for me to stay active duty and get the treatment I needed was going to slow the process down. I don't know if they will put me on the Temporarily Disabled Retirement List (TDRL) or if they will permanently medically retire me. The TDRL makes it where you could return to active duty within the next 5 years if you become medically qualified. The other pretty much puts you out to pasture. I think, since I have almost 21 years in the Air Force, they will permanently retire me. I will tell you that Nancy and I did a lot praying over this and we told God we have put it in his hands as we follow his perfect plan. Now that the decision has been revealed, Nancy and I are happy about it. Being medically retired will provide us with all the money we need, get us the health care I need and make our lives a whole lot simpler since I will be retired and I don't have to worry about the Air Force anymore. I will basically have one job. GET WELL! Third, Puget Sound VA Center is leading the pack on where I will be going. I would say there is about a 75-80% change we will end up there. Again, we left this up to the Lord and if that is where we end up, then we know it is part of the plan. From everything I can find about Puget Sound, it is the best place for me in the time frame (ASAP) that I need them. With their affiliation with the Hutch (five miles up the road), I believe they have the expertise and knowledge to make this a successful transplant. Of course this brings up a thousand questions. When will we have to be in Seattle? What do we do with our house in Niceville? When will the kids join us and how long will they stay? Will Mississippi State win the SEC football conference championship this year? As you can see there are a lot of unknowns. But we have trusted the Lord this far, I'm sure he will provide the answers when we need them answered. Otherwise, I am feeling GREAT!! Living in the TLF with Nancy is the best medicine that could be prescribed. Let me tell you, laying around in a hospital room for three weeks in no fun. Just one day out and I was a completely new man. Tomorrow I will have bone marrow biopsy performed to see if the last round of chemo killed off the leukemia. My counts are starting to come back up and I expect to not be neutrapenic tomorrow or the next day. I will still have to hang around here until my platelets recover, but in theory I could be ready to leave within the next two weeks. I just don't have any idea where I would be going....Niceville or Seattle? Lastly I would like to ask all the folks who have been praying for us to add Maj Dan Staley and Tsgt Greg Smith to your prayers. Greg is a gunner on a AC-130 stationed at Hurlburt who has leukemia. He just finished his fourth round of consolidation chemo. Pray for him to be healed by God through the chemo and for this to be his last treatment ever. Dan is another Air Force flyer who is stationed at Hurlburt who has leukemia. He is probably going to be going to Puget Sound VA Center at the same time as me for a bone marrow transplant. Whatever your prayers are for me, you can throw a ditto on for Dan. We will probably be in adjoining rooms. God Bless you all and thank you. 6 Apr 02 There is a good possibility that I will be released from the hospital to the TLFs tomorrow (Sunday) if I behave myself tonight (i.e. no fevers). However, go figure, I started running a 100.1 a little while ago. Every day for the last 4 days from about 1500 to 2000 I have run about a 99.5-99.8. Tonight I decide to run a 100.1. It isn't considered a fever unless it hits 100.5. So I will have to wait and see if I'm trying to act up. Today my white blood cell counts were up slightly. So maybe I am trying to pull out of this neutrapenic state and start growing an immune system again. Tomorrow's lab work should confirm whether I am really growing white cells or if it was just an erroneous report today. The search is still on for a transplant center. I was told on Friday that I could possibly stay active duty if I was willing to do my BMT at the University of Alabama Birmingham Medical Center. That is where TRICARE has a contract for BMTs. However, when I looked into their statistics, they haven't and don't do very many matched unrelated donor (MUD) transplants. I am only going to get one chance at a cure from this disease and I would prefer to be at a place where they do a lot of MUD BMTs. The Puget Sound VA which works in concert with the Hutch in Seattle does probably more MUDs than any center in the World when you combine the two centers together. The other one is MD Anderson in Houston, but I don't know how I would swing getting the Air Force or TRICARE to send me there. I'm still working on that one. I have typed up a little blurb on why it is important to get a good match for a bone marrow transplant. I tried to make it as simple as possible (so I could understand it). Click here if you want to read it. I'll update again when I get out of the hospital (hopefully tomorrow). Keep those prayers coming. Nancy and my faith have been growing exponentially over the last year. We are learning to trust the Lord and His perfect plan. I wish I could have learned this 20 years ago, but better late than never. 2 Apr 02 Not much going on right now...which is great. I have continued to recover well from my "episode" last week and I feel like I am running about 95%. I haven't run a fever since Tuesday afternoon and I am now down to taking just two of the three antibiotics. Those will continue until day 14, which will be next Monday. Unfortunately, my doctor isn't going to release me from the hospital until I am finished with all the antibiotics and she is convinced I am over this bug completely. So, it looks like I will be in the hospital until next Monday or Tuesday when, hopefully, I can go to the TLFs with Nancy. I can't say I don't agree with the doctor. As fast as I crashed on Sunday night, it would be tough on Nancy for me to be in the TLF and start that over again in the middle of the night and have her try to get me to the emergency room in time. Well the fight is on over what is going to happen to me for this bone marrow transplant. Since I am active duty right now, the Air Force or Tricare would be responsible for paying for this procedure (approximately $250,000 - $300,000). That is if I stay active duty. The push is on right now to have me medically retired and have the VA pay for the procedure. Since none of my brothers or sister match my bone marrow, I have to go out to the National Marrow Donor Program to try and find what is called a Matched Unrelated Donor (MUD). Basically they match my blood to the blood of folks who have signed up to be marrow donors to see if they can find a preliminary match. Right now they have found 13 people who match me on the first test. Until they decide who is going to pay for this transplant, they can't find me a transplant center to start doing in-depth testing on these people to see if they match me well enough to be my donor. Every day wasted is a day I could relapse before I get the transplant. It usually takes 3-6 months to go from finding a center and having the marrow there for the transplant. If the Air Force or Tricare pays for the procedure, there is no telling where I will go. If the VA pays for the transplant, I will either go to Vanderbilt University in Nashville, TN or the Puget Sound VA Center in Seattle, WA. They have told me they are pushing it up to get it all resolved and find me a center so the process can begin. Nancy left yesterday and visited with the kids at my sister's house in Gulf Shores, AL. She is keeping them during spring break while Nancy's mom takes a break back in Madison, MS. I talked with the kids and they were all thrilled to see Nancy. She spent the night and came back today. Next week the kids will be back in Niceville with Nancy's mom. That's about it here. I have been receiving a lot of cards and letters from folks. Almost all of them are from folks who are praying for me and my family and I just want to say I sure do appreciate it. I can't even count all the blessings Nancy and I have to be thankful for even in this period of tribulation. Please keep us in your prayers. It is what is sustaining us. 27 Mar 01 Whew! Where to start. I thought everything was going smoothly after I finished my chemo on Friday. I went neutrapenic (no immune system) on Sunday morning and had a visit from my family and an old friend. We took all the neutrapenic cautions (everyone washed their hands and I wore a mask). By Sunday evening about 1800, it was obvious things were not right. I started having some severe pains in my calves, thighs, shoulders, arms, wrist and back. Very deep bone aching pains. Then my temperature started rising through 102. As I tried to get up to go to the rest room later that night, I couldn't make it and passed out in my room. Prayerfully, Nancy was with me the whole night and she was able to catch me before I busted my cranium open or worst. I now became a big priority in the hospital. They were monitoring my blood pressure every ten minutes and it was dropping steadily. When it reached 60/30 (normal is twice each of those numbers) they transferred me to the Intensive Care Unit (ICU). Here was the adventure of a life time you only want to read about. They hooked me up to every medical machine known to man and put a tube in any place that would fit one. By the time they finished hooking me up I looked like a Borg from Star Trek who had been taken down. They put me on three of the strongest antibiotics known to man and ran some cultures of my blood. Over the next 24 hours my temperature was slowing lowering to the 101s and my blood pressure was up to 90/50 (not great but getting better). They told me to expect to be in the ICU for four to five days. But praise the Lord, I continued to get better and on Tuesday afternoon they sent me back to my hospital room with a normal temperature and normal blood pressure. I have steadily become stronger since then and prayerfully on the road to recovery. I am still taking the triple whammy of antibiotics and I probably will continue on them for about 14 total days. The cultures show that I had some skin bacteria get into my blood. For a person with a normal immune system, that's ok. Your body knocks it out as soon as it crawls in. When someone is neutrapenic, it can be a death sentence. Now let me tell you the cool things about this adventure. Nancy was amazing. She was a cool as a cucumber when I passed out and did all the right things to get me in a position of stability. Then she called the Calvary and didn't leave my side the whole night. The other cool thing we did was prayed. Not desparation prayers for my healing but for the Lord to wrap his loving arms around us and carry us through this. And He did. We talked about it yesterday and we both felt we had nothing to worry about (no matter how it turned out) because the Lord was in control and you can't get any better than that! Well, I'm feeling about 85% now. I'm getting platelets, red blood and antibiotics all day today. I will probably be in the hospital until at least next Monday, then maybe released to the TLFs. It is better to be away from the hospital when you are neutrapenic because of all the germs running around this place. I think we just proved it again. Thank you all for the emails and signing the guest book. I don't always get a chance to answer the emails (especially when I'm in the ICU) but I read them all and I read all the guest book entries. Please keep the prayers coming. There is no single act anyone can do for us more important than to say a prayer for us. 21 Mar 02 I am sitting in my hospital room at Keesler AFB, MS waiting to go to bed. Things have settled down quite a bit since I made my way over here last Monday. Here is a quick "fill-in" on how I got back in the hospital: As you may recall, I came back from my 3 month check-up on 20 Feb 02 with a clean bill of health. On 27 Feb 02 I started to get a rash on my right arm which spread to my left arm and then to my chest. By Wednesday I had progressed to a full chest cold but I had no fever. On Saturday, 9 Mar 02 nothing is getting better and the rash is getting much worst so I called the oncologist at Keesler and they told me to have a work-up done by the flight surgeons and see if I needed to come to Keesler. I started to run a fever on Sunday and went to see the docs on Monday. Needless to say, the flight surgeons were not happy with what they saw, but you really could not tie it into leukemia. It had all the indications of a rash and a cold and that's it. After much thrashing, I came to Keesler on Wednesday, 13 Mar 02 and had a bone marrow biopsy done. The results were inconclusive, so they sent me home and waited for the results to come back from Wilford Hall Medical Center. After I was sent home I started running 104.5 fevers on a daily basis, twice a day about the same time. On Friday, they called and said my bone marrow had 35% leukemia blast in it and that I was in relapse. I was given to the option to come in on the weekend and have some temporary lines put in or wait until Monday and get a new Hickman for the treatments. Since the Tylenol was controlling the temp and the rash looked like it was getting better, I elected to wait for Monday. Bad call. I really went down hill over the weekend and by the time I showed up at Keesler on Monday, I looked like Frankenstein's Monster. The Rash had spread to my neck and face. I had these huge growths in my neck and my right eye was completely shut and swollen. I could barely swallow and was running those high temperatures. Well, to try to make this story shorter, it turns out the rash is another bout with Eosinophilic infiltration. As you may recall, I had those eosinophils attack my intestines a year ago and we went off on a wide goose chase thinking that was my problem. This time they were (are) attacking my skin (which is the body's largest organ). They have me on massive steroids to try and reverse the infiltration and so far I am getting better. It just turns out that when my body has active leukemia, it produces too many eosinophils and they run out and find something to attack. Now for the leukemia. I am taking two new drugs to get me back in remission. Mitoxantrone and VP-16. They have the usual side effects: loss of hair, mucusitus, nausea, ect. So far I am complete with day four. Tomorrow I will do day five, which is the last. I have had no side effects yet from the chemo. Although I do expect to have to shave my head again soon. We could be released to the Temporary Living Facility (TLF) on Monday and come to the clinic daily for the next few weeks while I ride out another lost and recovery of my immune system. After I recover my immune system, they will do another BMB to see if I am in remission again and can then proceed to the BMT. I will talk about the BMT later when I get more data. Well, that is it. Nancy and I have been praying for answers and the Lord keeps coming back with the same answer. Be patient; follow me; I am in control. When I look back over the last six months, I have not done a good job of that. I spent a lot of time and energy trying to get my life back to normal. The Lord has shown me once again that I can trek off and do whatever I want, but if I want to do it the easy way, follow Him. It is taking me a little while, but watching all my work to get back in the cockpit blow away like dust on the runway in a split second, I know I am not in control. That is my big challenge for myself this time around. Be patient, follow the Lord for he is in control! God Bless you all. Keep the prayers coming. |
3 Aug 02 "Houston, we are go for transplant....let the countdown begin". I talked to the VA in Seattle yesterday. My donor has agreed to donate, passed his physical and we have set a date of 29 Aug 02 for my BMT. I guess I really need to quit calling it a BMT since the donor has agreed to donate peripheral stem cells (PSC), so technically I am having a PSCT (T for transplant). PSCs are better than bone marrow for me and harder on the donor. For me, it means a faster engraphment of the new immune system...up to a week earlier (two weeks vs. three weeks for bone marrow). You may be asking, "what are stem cells?". Stem Cells are produced by the body and have the ability to become different types of cells. Scientist don't really know how they work, they only know that when the body needs red blood, the stem cells become red blood cells. When the body needs platelets, the stem cells become platelets. When the body needs white blood cells...well, you get the picture. For the donor, it requires a lot more time and preparation. If he were giving bone marrow, they would bring him in on the 29th of August, put him to sleep, and pull bone marrow out of his rear pelvis bone with a needle in four to six spots. This is the same procedure I endure every time they do a bone marrow aspiration for a bone marrow biopsy, only they don't put me to sleep and they only stick me once (sometimes twice). For a PSCT, the donor takes Neupogen shots for a few days before the collection. This is the same drug I take when I am neutrapenic (no immune system). Neupogen forces a neutrapenic patient to produce stem cells that become white blood cells. A healthy person already has all the white blood cells he needs, so when he takes Neupogen it causes the body to produce an excess of stem cells and they flow out of the bone marrow and into the blood stream. Then the donor comes to the hospital for one to three days and is hooked up to a machine that takes the stem cells out of his blood and then puts the blood back into him. This procedure takes about three hours and depending on how many cells they collect, it could take up to three days to collect enough for a transplant. As far as the transplant is concerned, it is the same for a BMT or a PSCT. They simply hook up the bag of cells to my Hickman catheter and it infuses exactly like a blood transfusion. Eventually they find their way into the bone and start producing the new bone marrow. Everyone who has ever had one tells me that the actual transplant (the infusion) is anti-climatic. It is the next 100 days that all the excitement happens. I will write about that later. In other exciting news, tonight is our last night in Niceville. The house is empty and all of our stuff is in storage. We will be pulling out of the driveway after church tomorrow and heading to Madison, MS for three days. I truly have not been worried about anything that has happened or is about to happen. We have put our trust in the Lord and He has shown us why that is the smart way to live. Everything has been falling in place as if their were a master coordinator planning it all (and there is!). As the Bible says in 2 Samuel 22:32, "As for God, His way is perfect; The word of the LORD is proven; He is a shield to all who trust in Him.". Amen! God Bless you all. 26 Jul 02 We sold our house! That same couple I wrote about last time, who was interested in our house, made an offer, we countered, and they accepted. Everybody is happy with the sale. The new owner came by with the housing inspector and told me he is remodeling the kitchen, all the bathrooms and putting new floors throughout the house. I would love to come back some day and see what they do. Nancy and I are thanking the Lord for taking this worry away from us as we move to Seattle. Not having a house and all the bills associated with it will save us over $2000.00 a month. Since the VA gives us our apartment and all the utilities for free, we should have no money problems (even on retirement pay) while we are in Seattle. The VA is paying for Nancy and me to fly to Seattle, but they don't pay for the kids. However, I was able to find three round trip tickets from Jackson to Seattle for $220.00 each. I couldn't believe the prices. The last time I check (back in May) the prices were over $400.00 each. We also found a mid-size rental car for $395.00 a month. That is about the same price as a standard car payment. This company has a deal with the five cancer hospitals in Seattle to provide cars for long-term care patients. We all had a nice visit with my sister (Sara) and her family in Gulf Shores, Alabama this week. Johnny cooked us fresh Amberjack and Snapper he had caught a few days earlier and, of course, it was great. We all had a good time. Next stop is Jackson to visit with the rest of my family and Nancy's family before we jump on the plane for Seattle. I want to apologize to everyone for not putting out invitations to our retirement/going away party. It was put together on very short notice since no one (including us and the VA) knew when we would be leaving the local area. I have received many emails from friends who wanted to attend, but didn't know anything about it. The squadron did an outstanding job working on such short notice and there was no way invitations could have be sent out and received before the party. I am feeling great. Other than weighing a hefty 245 pounds, you would never know I had ever been ill. I keep asking the Lord if I really need to go get a bone marrow transplant and I keeping getting this feeling ( I can't explain it with words) that I am supposed to go to Seattle for this treatment for more reasons than just to cure leukemia. Don't ask me to explain it. Nancy and I are simply trusting in the Lord. It may not become obvious to us until much later. Please keep us in your prayers and God bless you all. 18 Jul 02 Finally we have some movement in the VA bureaucracy! Although the package is still in D.C. awaiting approval, the Seattle VA has scheduled me to start my transplant procedures on 8 Aug 02. We will all fly up there on 7 Aug. The VA will be providing us with our living quarters and of course they will be footing all of the medical bills. We will be responsible for our personnel spending while we are up there. The actual transplant date has not been set yet, but it will probably be about two weeks after we show in Seattle. If the transplant happens on or about 22 Aug, then we will probably be up in Seattle until around the first of December. We are planning on moving out of our house on 29, 30 and 31 July. All of our "stuff" will be put into storage until we finish with the transplant. After we move out of the house, we are going to move up to Madison, MS for a few days to get the kids enrolled in school. They will be going to the "Hutch" school in Seattle, but this school works with their home school so they can follow the same curriculum as the Madison schools. They will even use the same text books as the school in Madison. That way, when we move back to Madison, they will be at the same place as all the other students in Mississippi. As far as the house is concerned, we have been showing it to a lot of prospective buyers. There appears to be one family very interested in the house. They are coming back tomorrow for another look and have asked a lot of question about the house. They also want to have a home inspector come out before they make a bid. We told them that would be fine. Sounds to me like they are really interested in our house. The 85th TES gave Nancy and me a going away party/retirement party last Friday. It was awesome. I couldn't believe how many people came out to say goodbye to us. They gave us lots of going away mementos and they even had my jet, F-15C tail 850126, sitting out in front of the squadron with my name still painted on the canopy sill. I want to say a special thank you to E.T. Murphy and Kooler Krumm for making this party happen on such a short notice. I know all of the "Skulls" were involved in the setting up and taking down of the party and I just want to say, "Thank you" all. Nancy and I will always think of the Skulls as the best squadron in the USAF. God has been good to the Tatum family. We have been passing all of our worries onto Him and he has giving us back peace of mind. Thank you all for your prayers. I am feeling great. It is hard to believe I need a bone marrow transplant. As we get closer to the transplant, I will start updated this site more often to keep everyone informed on what is going on. God Bless you all. 11 Jul 02 Happy 20th anniversary to Nancy and me (10 Jul). It is hard to believe that we have been married for 20 years. Marrying Nancy is by far the best decision this side of heaven that I have ever made. I still haven't heard anything worth repeating from the VA. I have talked to the center in Washington and the one in Biloxi and everything appears to be ready to go. I had to go to Biloxi last Wednesday for a bunch of test. They did a heart echo, EKG, pulmonary test, kidney test, liver test, chest x-ray and I even had to see a shrink. Then I had to have a TB test and a dental exam. The reason for all the tests is to make sure I am physically and mentally ready for the bone marrow transplant. If you want to read a little of what it will be like to have a bone marrow transplant, click here. His name is Andrew and he is on day seven of the exact same procedure I will be going through. He and his wife, Susan, are very loyal followers of Christ as you will see in his pages. My squadron is giving me a going away party tomorrow at the new squadron building. I have been keeping to myself over the last few months since the relapse, so it will be good to see everybody again. I hope they recognize me, I have gained about 30 pounds due to the steroids and just being inactive for the last three months. I have passed many people face-to-face over the last couple of week that didn't even recognize me until I said something. The bald head doesn't help much either. I found the web site of a sixteen year old girl who is in remission from leukemia. She has such a strong faith in Jesus and is able to clearly articulate it through her writings. If you would like to see one of Deiah's letters, click here. Keep those prayers coming. If you haven't signed my guest book lately, please sign it again. Your messages really help keep our spirits up. As it is said in Proverbs, "The spirit of a man will sustain him in sickness, But who can bear a broken spirit?" God Bless you all. 1 July 02 The trip to Lake Martin was a complete success. The kids had a great time, I visited with both of my brothers and sister along with their entire families. Also my Aunt Julie, Aunt Mary Alice and my cousin Debra came by to visit with all of us one day. It was a great trip and I didn't get sunburned! I received an email from the VA in Seattle telling me that I should be hearing from them this week concerning when I should show up for the transplant. They said they had all the paperwork in order and they just needed for one of their oncologist to talk to the Biloxi VA and then everything should be set. We have the appraisal back for our house. We were very surprised at the final figure. If we can sell the house for close to what it appraised, then this will have turned out to be a very good investment for four years. Of course, asking ain't getting. My father always told me something is only worth what another person is willing to pay for it. I had my 43rd birthday up at the lake last week. Looked like a wildfire raging on top of that cake. Also, today is my first day of retirement. Funny, I don't feel any different than I did yesterday. Nancy and I are continuing to place our faith in the Lord. We have lots of things we could be worrying about, but we believe Jesus when he said, "Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble". God bless you all. 20 Jun 02 With the Lord's help, we are back from Keesler for good. Ron, Steven and I drove back to Keesler on Monday and I had a bone marrow biopsy performed on me and had my Hickman catheter removed. Both procedures went without a hitch. A lot of people talk about how painful a bone marrow biopsy is, but I don't see why they say it is all that painful. I have now had eight of them and yes, there is about a five second period (when they are sucking the fluid from the bones) that is rather painful. But after they finish that part, the rest is a breeze. As far as the Hickman being removed, the surgeon told me it was the easiest one he had ever removed. Both procedures were done under local anesthesia and the boys and I drove home as soon as they were complete. Dr. Dice called me yesterday and told me the results of my biopsy showed 0% blast (i.e. no leukemia). So, I am still in complete remission and ready for the bone marrow transplant. Thank you Lord! I have been running around like a chicken with its head cut off trying to get all the paperwork needed to retire. I finally finished the bulk of it yesterday and I have an appointment Friday morning to out process. After that, I will be officially retired on 1 July. We are all getting exited about the family reunion next week at Lake Martin. Everyone always has a great time and we are all looking forward to a little R&R before we make the trek to Seattle. Lastly, Nancy and I have decided to sell our house. Our plan is to move to Mississippi after the transplant. So, if anyone knows of anyone looking for a 2600 square foot, four bedroom house, with a pool on a lake, tell them to give us a call. I'm still waiting on the appraisal to see how much we are going to ask for it. Hopefully we will be able to sell it fast. Thank you all for the prayers for my family and me. God's presence has been felt everyday. He is showering us with more blessing than I ever imagined possible. God Bless you all. 16 Jun 02 Happy Father's Day to all us fathers! Nancy and I made it back to Niceville yesterday in time for Father's Day. Unfortunately, I have to be back at Keesler tomorrow to have a bone marrow biopsy performed and hopefully to have my Hickman catheter removed. Grandmama went home with Uncle Warren yesterday after staying with the kids for almost a month. I may only be at Keesler for the day or maybe just overnight. Ron is going to drive over there with me in case I need someone to drive me back after the two procedures. After I told Steven that we are going to stop at the Original Oyster House Restaurant for dinner on the way back, he decided he wanted to go also. They have narrowed the search down to two donors for the bone marrow transplant. One is a 23 year old man with O positive blood. The other is a 22 year old man with B positive blood. Both of them are perfect matches for my bone marrow HLA type. They decided to go with the O positive as the primary (since I have O negative blood) and the B positive as the backup. Everything is now waiting for the VA to say, "Go" to begin the countdown for the transplant. When the VA gives the go ahead, it will take about five weeks to make it all happen. That means we might be leaving for Seattle the first week of July with a transplant around 25 July. They want me up there two to three weeks before the transplant to run a ton of test to make sure my body can handle the procedure. Once again the Lord has made the timing of everything work out perfectly. Our annual family reunion at Lake Martin, Alabama is coming up next week. Nancy and I missed it last year while I was doing a round of chemotherapy (the kids did get to go), but we are going to make it this year. The timing couldn't have worked out better. I get a week at home to recover from the last round of chemo and then we will be leaving for Seattle a week or so after the reunion. Thank you all for the guest book signings, emails and cards. The prayers and the encouragements are really helping a lot. Things couldn't not be going any better for the Tatum family right now and I see no reason to think it won't continue this way. Thank you Lord! 10 Jun 02 Unfortunately, we didn't get to go home this weekend, however, I am no longer neutrapenic (I have an immune system). I feel almost certain we will be heading home by this weekend. Everything went perfect on this last round of chemo. Thank you Lord, no side effects at all. I was neutrapenic for about two weeks, so it was nice to be able to leave the TLF and not worry about being around other people. I'm looking forward to putting Keesler AFB in my rear view mirror (again). Next stop; hopefully; Seattle. I'll update more when I get more details of when we leave for Seattle. Until then, God Bless you all. 4 Jun 02 Well, there is really not a lot to report, but I thought I would update the site anyway. No news is good news usually. I have been neutrapenic (no immune system) for one week and will probably stay that way until at least this weekend. That means avoiding people, eating only cooked food and keeping my Hickman catheter really clean. So far I have received two units of whole blood and three transfusions of platelets. I have had absolutely no problems whatsoever and we are looking forward to getting back to the kids maybe by this weekend. I would like to tell you about a 15 year old boy here at Keesler who has leukemia (he is from the Ft Walton area also). He has been here at Keesler for about three months. When we left here in April, Brian was not expected to live. His heart had been badly damaged from lack of red blood, he had pneumonia and a fungal infection, was on a respirator and in the intensive care unit. Everyone told his mother that he would not survive. However, his mother had a stronger belief in God that she did in the doctors. She knew it would take a miracle, but she knew that the Lord performs miracles all the time. While the doctors and her family told her to prepare for Brian's death she continued to pray. We heard daily reports about how he was sinking further and further away and that they wanted to take him off the ventilator. She told Nancy she would not allow them to take him off the ventilator until God released her from praying for his healing. As you may have guessed, the doctors were wrong and the mother was right. God did provide the miracle and we saw Brian at the hospital last week. He is now out of ICU and is able to take passes out of the hospital. He just finished his second round of chemotherapy for the leukemia (they couldn't even administer it due to his heart last month). I have no idea what God has planned for Brian and his family, but for now He has plans for him to live. For the rest of us, it has been another example of how God does not conform to the physical world. What was impossible for the doctors was very possible for God. When the secular world tells us what is impossible, God shows us that all is possible with Him. God bless you all and thank you for providing me and my family the same connection Brian's mother provided for him....your prayers. 25 May 02 It has been one year and two weeks since I found out I had leukemia. Last night I finished up my sixth round of chemotherapy in all that time. So far, no problems with this treatment. I will be leaving the hospital this morning for the temporary living facilities (TLFs) to watch my immune system disappear for a few weeks and then recover. It will be the standard hermit act of staying away from people as much as possible, going to the clinic everyday to see if I need blood or platelets and trying to keep clean so I don't pick up any infections. Nancy will turn the room into as much of a sterile environment as possible for me. Since I was receiving a lower dose of chemo this round, I was able to leave the hospital everyday this week at noon (after my morning chemo) and return at 2100 (for my evening chemo). Let me tell you, that made this stay the most pleasant of all! Any second out of the hospital is like a day in paradise. For those of you interested, I was receiving low doses of Mitoxantrone, VP16 and ARA-C in the morning and low doses of ARA-C at night. The "low dose" was about 2/3 what I received the last time I was here and the ARA-C was added at a dose of about 1/6 what it was when I was doing consolidation chemotherapy last fall. Remember, this treatment is for maintenance only to keep me in remission before the bone marrow transplant. Grandmama and the kids are doing great in Niceville. The kids are really helping out with the driving, cutting the yard, cleaning the pool, cleaning up after supper and even making supper sometimes. It has really been a blessing watching them step up to the challenge of this ordeal. When we talk to them on the phone, they are always cheerful and ready to help anyway they can. And of course Grandmama is something else. For her to continue to come down to Niceville and take care of the kids for a month at a time has been great. The peace of mind she brings to Nancy and me can't be described. We are truly a blessed family! We have another Air Force leukemia patient from the Fort Walton area here at Keesler. Lt Col Mike Dunn has been working at Hurlburt since the 9/11 attacks and was just diagnosed a short while ago. That now makes nine Air Force (active and dependents) from the area diagnosed with leukemia in the last year. I have heard there are several civilians who work at Eglin and Hurlburt who are in local hospitals with leukemia also. We are trying to track down the exact number. Maj Dan Staley found out this week he has no "perfect" donor matches in the bone marrow register. He is now weighing his options of continuing with chemo, having his own bone marrow extracted and returned to him in a autologous BMT or go for a near match (5/6) allogeneic BMT. TSgt Greg Smith is doing great back at Hurlburt. He received his three month checkup last week and there is no sign of leukemia. I ask you all to pray for these three men and their families (while you are praying for us also, of course). Each one of us is going through different stages of this disease, however, the power of God will see us all through if we will truly turn to him. Specifically pray that the Holy Spirit will move within each of us to call us fully to the Lord. God bless you all. 19 May 02 When I left Keesler AFB Medical Center on 18 Apr, I was supposed to be home for about 10 days. Well, 31 days later, we are finally (no kidding) heading back to Keesler for my next (and hopefully last) round of chemo before the bone marrow transplant. Uncle Warren showed up here today with Grandmama and we are all set to leave. Like I have said before, this will be a lower dose of chemo meant to keep me in remission . I talked to the Hutch in Seattle and they told me there are no active phase II/III clinical trials going on for my situation. Basically they told me my situation was too common and my prognosis was too good, so there really was no reason for me to do anything except the standard protocol for leukemia. This means I won't be going to the Hutch and will be going to the Puget Sound VA Center instead. That is ok with me. I have talk to several doctors and nurses who are not associated with the Puget Sound VA Center, but know about it and they all made the place sound like a good place to go. They run the same protocols as the Hutch and the doctors all did their residence work at the Hutch. Nancy and I have asked the Lord to lead us to the right place for the transplant and it is obvious he is closing and opening the right doors to lead us to the VA Center. There is not much more going on around here right now. I will update again after I finish my chemo next week. Please put/keep the Tatum family in your prayers. Specifically, ask the Lord to protect my children and Grandmama while they are here in Niceville and for Nancy and me to make it through this next round of chemo with no adverse side affects. Thank you and God Bless you all. 12 May 02 News Break...My doctor emailed me this morning. She wants me to stay home another week. She is out of town and doesn't want to have the other doctor give me the chemo with my blood levels so low. She says I wil get the chemo next Monday regardless of my counts after she gets back in town. I think this should be my last treatment for sure since I should be ready for my transplant by the time I recover from the next chemo treatment. 10 May 02 Although my platelets still are not at 100,000, my doctor wants me back at Keesler this Monday for my next treatment. She doesn't want me going too long between chemos and risk another relapse. So, Grandmama is on her way down and we are getting ready for another month of fun on the Mississippi coast. I received a letter from The Hutch in Seattle yesterday. It turns out that I have over 1000 6 of 6 matches for my bone marrow transplant. That's right....over 1000. I couldn't believe it when I read it, so I called them to confirm. Sure enough....over 1000. The lady at The Hutch says I have a very common HLA type. They have now narrowed the list down to 11 young men who are CMV negative (CMV is a virus that 50-80% of all adults have by the time they reach 40 years old. It can cause lots of problems for BMT patients). She said their experience is that out of 11 perfect matches, 7 would probably be available for donation. Nancy and I have been praying for a good match and it is apparent He is moving us in that direction. My retirement date has been set. I will be medically retired on 1 July 02. Since I am going TDY (temporary duty) to Keesler, I can't be on leave at the same time. Although I have over 90 days of leave saved up, by law I can only sell 60 days back to the Air Force. I will be using my 20 days of permissive TDY when I get back from Keesler and then I will be retired. That means I will lose 30 days of leave (which translate into $6,000.00). I am not too worried about it though. The Air Force has given me about a zillion days of convalescent leave over the last year and we have been treated very fairly by the entire military system. I will put in a waiver for losing the leave under circumstances beyond my control, but it will be considered a bonus if I get paid for it. Nancy and I went to our monthly Gideons camp meeting last night. It was really great seeing and fellowshipping with our fellow Gideons. I had been a member for a couple of months before I relapsed and have really missed the weekly Saturday morning meetings and the camp meetings. If you aren't familiar with the Gideons, you can click here to see what they (we) are all about. We still don't know if I will be getting my transplant at The Hutch or the Puget Sound VA Center, but the way the Lord has been guiding us over the last year, I'm not worrying about it. My newly learned (re-learned is more like it) skill of having patience and trusting the Lord is working great. No need to worry, the path will become apparent. God bless you all and keep those prayers coming. 03 May 02 Not much going on around here right now. My platelets today are at 70,000. Still not good enough for another dose of chemotherapy (my doctor wants 100,000), so I have to stay home another week. This is actually great news in another way also. Since it is taking my bone marrow so long to recover, it is quite possible this could be my last round of chemo before I head up to Washington (or wherever we are going) for the transplant. Nancy and I have been tossing around the idea of moving back to Jackson, Mississippi after the transplant. We would be near family and the University of Mississippi Medical Center has a bone marrow transplant Center in Jackson and they could do my follow-up treatments. There really is no place near Niceville, Florida that can handle the complications that can set in after a transplant. The nearest center is in Birmingham (3.5 hours away). Of course, we are doing and will do a lot of praying to see if this is where God is leading us. I am not going to make the same mistake and try and wrestle the controls away from Him again. We will be patient and the path will unfold in front of us. That's about it. Keep those prayers coming, Nancy and I feel them everyday. God Bless you all. 27 Apr 02 Darn...Darn...Darn! What can I say? My platelets are only at 51,000 and my doctor wants them to be at 100,000 before I do the next round of chemotherapy. Now I have to stay at home for at least another week (maybe two) before I get back to Keesler. Did I say, "Darn"? I have a new link on the main page that gives a lot of information about bone marrow transplants if you are interested. God Bless us all! 25 Apr 02 First of all, happy birthday to my 16 year old son Ron. He is going to get his driver's license tomorrow. That will be a big help for when we leave next week for Keesler because he will be able to "do the errands" for Grandmama instead of having to call friends and neighbors. He has already picked up the yard work chores now that he has leaned to drive the riding lawnmower and he is keeping the pool looking good. He is really a big help around here. My doctor sent me an email yesterday. The no-kidding-no-more-studies-final report on my bone marrow biopsy is back and....drum roll please....it showed no blast in my marrow...zero...nada. Let's see, it went from 13% to 7% to 2% to nothing without taking anymore chemo. All I know is: God is good. The cranium-nurse at the Keesler Oncology Clinic called yesterday and told me the Air Force is going to pay for the bone marrow donor search instead of waiting for the VA to do it after I am medically retired. This is great news since it means I won't have to lose any permissive TDY or leave (I have 89 days of leave and can only sell back 60 by law). If the Air Force hadn't come up with the money, I would either lose that extra 29 days of leave and 20 days of permissive TDY or wait until July to start the search for a donor. Neither was acceptable to me. This means I will keep a full Air Force pay check (minus my flight pay that stopped this month) for almost another three months. I found out this week that I still might make it to the Hutch (Fred Hutchinson Cancer Research Center in Seattle) instead of the Puget Sound VA Center. There is a program from the National Cancer Institute that helps people like me get into phase II and phase III clinical trials when your insurance won't pay for it. I should find out in the next couple of weeks if I am eligible for one of these trials. If I am, I can then be briefed on what the trial is all about, decide if I want to participate or choose to go to the Puget Sound VA Center instead. It opens up a lot more options for me and the clinical trial could be something I want to investigate. It looks like the transplant will not happen now until sometime in July. That is later than I thought, but with me being in remission, there is not as much need to hurry as before. What it will mean is probably two more rounds of chemo at Keesler before the transplant. As always, keep those prayers coming and God bless you all. 19 Apr 02 Remember last week when I found out I still had 13% blast in my bone marrow and I prayed and asked God to let me understand how prayers work? Well, I got the word today that I have 2% blast in my bone marrow now. Although I haven't had anymore chemo, it just kept coming down. You know what that means? I am in remission...again!!!! Also, it means I failed my "pray with no doubt and with faith" trial. Keep trusting, be patient, the Lord has a plan that will always beat mine. Will I ever learn? I start back with consolidation chemo on 29 Apr 02. Much lower doses than usual. This plan is just to keep me in remission until the transplant. God Bless you all. 18 Apr 02 I can't hardly believe it, but Nancy and I are back in Niceville!! We left Keesler yesterday and arrived home about 1900 last night. Let me tell you, after 22 days in the hospital (2 in ICU) and 10 days in the TLFs, it was nice to be home. The kids were all excited and so were we to see each other. Grandmama did an excellent job of keeping the kids, as usual. She is going to stay with us for a few days then Nancy's brother, Warren, is going to come down from Madison, MS and take her back home for some R&R. We don't get to stay long (only about 9 days), but I will take that over staying at Keesler any day. Once again, following the Lord and not trying to do it my way has been shown to me the best way (I may actually be getting it!). I had my bone marrow biopsy yesterday and my doctor's preliminary hack at it was that it looked better than the last one. She thinks I may be in remission, but I won't get the final word until tomorrow or Monday. I will hold off getting excited until I see the actual results. I did bring home an eye infection or something that is affecting my left eye only. It is swollen pretty good (or as we say down south, "it swoll up purty good), but nothing like when I showed up at Keesler, looking like Gary Kooney, a month ago. I have some eye drops and steroids I am taking to try and get rid of it. I have been avoiding visitors until this thing gets under control. Hopefully I will be going over to my old squadron and seeing friends again by this Monday or so. I was telling my mother-in-law (Grandmama) this morning, I have one bad thing going on in my life right now, but more blessings than I can count. Coming home last night made me feel like I just went over the one million blessing count. That one bad thing just seems to get smaller and smaller everyday. As usual, thank you again for all the prayers. Nancy and I send them back to all of you. God Bless you! 13 Apr 02 All is well in Biloxi, Ms. Some very strange things happened here over the last couple of days. My preliminary bone marrow biopsy (BMB) results came back and showed I still had 13% blast (leukemia) in my bone marrow. Very disappointing, to say the least, since this latest chemo was supposed to be the "strong" stuff. My doctor wanted me to start another round of chemo today with the prospects of being here for a least another month. Last night I was praying and telling God that I really don't understand prayers. Nancy and I prayed often that this latest chemo would put me in remission. As you know, there are many places in the Bible that say if you have faith and don't doubt, ask of the Lord and you will receive. Also it says when two Christians agree on anything, it will be done. I wasn't questioning God, I just asked for wisdom to understand what it means and how is prayer supposed to work. Well, I got a phone call from my doctor this morning and she said that the final results of the BMB actually showed only 7% blast in my marrow (still not remission but only 2% above what is considered remission) and that she wants me to stop my neupogen shots (the stuff that caused the bone marrow to produce extra white cells). She wants to do another BMB on Wednesday because it is possible the neupogen is masking a remission. No chemo, no hospitals, nothing (unless I need blood or platelets) until Wednesday. And, it is possible I am in remission. Nevertheless, the 7% vs. the 13% shows the chemo was effective on the leukemia and another round may put me in remission (if I'm not already). Now I'm not saying God answered my prayer because I asked the questions last night.....but I'm not saying He didn't. I'm saying, God says He will never give you more than you can handle and maybe last night He decided my plate was getting a little full and He lightened my load a little. And that He did do! Since I won't be going home to Niceville anytime soon, I think Nancy is going to go over and bring the kids back next Friday and have them spend the weekend over here with me. I haven't seen those guys in almost a month. I should not be neutrapenic and hopefully I will be an outpatient, so maybe we can do some eating out and going to the movies while they are here. Anything. I just want to see them. Keep those prayers coming. Greg and Dan are doing great. Dan is back at Hurlburt for a week (good BMB results) and is on track for his BMT with me in Seattle this summer. Greg should be getting ready to go back to Hurlburt for good. Pray that when he puts Keesler in his rear-view-mirror, it will be forever! 9 Apr 02 A lot has happened in only three days. First, today is the change of command ceremony for Lt Col Ken Stefanek to officially assume command of the 85TES. Stef really came through for me last summer and fall when he temporarily took the squadron while I was in chemo treatment. He has been my operations officer since I came back and it was announced in February that he would be my replacement when I was due to rotate this summer. There is no one who is better qualified or who deserves to command the Skulls more than Stef. I wish him Godspeed and a very successful tour as commander. Second, it looks like I will be medically retired within the next week. We just got to a point where trying to figure a way for me to stay active duty and get the treatment I needed was going to slow the process down. I don't know if they will put me on the Temporarily Disabled Retirement List (TDRL) or if they will permanently medically retire me. The TDRL makes it where you could return to active duty within the next 5 years if you become medically qualified. The other pretty much puts you out to pasture. I think, since I have almost 21 years in the Air Force, they will permanently retire me. I will tell you that Nancy and I did a lot praying over this and we told God we have put it in his hands as we follow his perfect plan. Now that the decision has been revealed, Nancy and I are happy about it. Being medically retired will provide us with all the money we need, get us the health care I need and make our lives a whole lot simpler since I will be retired and I don't have to worry about the Air Force anymore. I will basically have one job. GET WELL! Third, Puget Sound VA Center is leading the pack on where I will be going. I would say there is about a 75-80% change we will end up there. Again, we left this up to the Lord and if that is where we end up, then we know it is part of the plan. From everything I can find about Puget Sound, it is the best place for me in the time frame (ASAP) that I need them. With their affiliation with the Hutch (five miles up the road), I believe they have the expertise and knowledge to make this a successful transplant. Of course this brings up a thousand questions. When will we have to be in Seattle? What do we do with our house in Niceville? When will the kids join us and how long will they stay? Will Mississippi State win the SEC football conference championship this year? As you can see there are a lot of unknowns. But we have trusted the Lord this far, I'm sure he will provide the answers when we need them answered. Otherwise, I am feeling GREAT!! Living in the TLF with Nancy is the best medicine that could be prescribed. Let me tell you, laying around in a hospital room for three weeks in no fun. Just one day out and I was a completely new man. Tomorrow I will have bone marrow biopsy performed to see if the last round of chemo killed off the leukemia. My counts are starting to come back up and I expect to not be neutrapenic tomorrow or the next day. I will still have to hang around here until my platelets recover, but in theory I could be ready to leave within the next two weeks. I just don't have any idea where I would be going....Niceville or Seattle? Lastly I would like to ask all the folks who have been praying for us to add Maj Dan Staley and Tsgt Greg Smith to your prayers. Greg is a gunner on a AC-130 stationed at Hurlburt who has leukemia. He just finished his fourth round of consolidation chemo. Pray for him to be healed by God through the chemo and for this to be his last treatment ever. Dan is another Air Force flyer who is stationed at Hurlburt who has leukemia. He is probably going to be going to Puget Sound VA Center at the same time as me for a bone marrow transplant. Whatever your prayers are for me, you can throw a ditto on for Dan. We will probably be in adjoining rooms. God Bless you all and thank you. 6 Apr 02 There is a good possibility that I will be released from the hospital to the TLFs tomorrow (Sunday) if I behave myself tonight (i.e. no fevers). However, go figure, I started running a 100.1 a little while ago. Every day for the last 4 days from about 1500 to 2000 I have run about a 99.5-99.8. Tonight I decide to run a 100.1. It isn't considered a fever unless it hits 100.5. So I will have to wait and see if I'm trying to act up. Today my white blood cell counts were up slightly. So maybe I am trying to pull out of this neutrapenic state and start growing an immune system again. Tomorrow's lab work should confirm whether I am really growing white cells or if it was just an erroneous report today. The search is still on for a transplant center. I was told on Friday that I could possibly stay active duty if I was willing to do my BMT at the University of Alabama Birmingham Medical Center. That is where TRICARE has a contract for BMTs. However, when I looked into their statistics, they haven't and don't do very many matched unrelated donor (MUD) transplants. I am only going to get one chance at a cure from this disease and I would prefer to be at a place where they do a lot of MUD BMTs. The Puget Sound VA which works in concert with the Hutch in Seattle does probably more MUDs than any center in the World when you combine the two centers together. The other one is MD Anderson in Houston, but I don't know how I would swing getting the Air Force or TRICARE to send me there. I'm still working on that one. I have typed up a little blurb on why it is important to get a good match for a bone marrow transplant. I tried to make it as simple as possible (so I could understand it). Click here if you want to read it. I'll update again when I get out of the hospital (hopefully tomorrow). Keep those prayers coming. Nancy and my faith have been growing exponentially over the last year. We are learning to trust the Lord and His perfect plan. I wish I could have learned this 20 years ago, but better late than never. 2 Apr 02 Not much going on right now...which is great. I have continued to recover well from my "episode" last week and I feel like I am running about 95%. I haven't run a fever since Tuesday afternoon and I am now down to taking just two of the three antibiotics. Those will continue until day 14, which will be next Monday. Unfortunately, my doctor isn't going to release me from the hospital until I am finished with all the antibiotics and she is convinced I am over this bug completely. So, it looks like I will be in the hospital until next Monday or Tuesday when, hopefully, I can go to the TLFs with Nancy. I can't say I don't agree with the doctor. As fast as I crashed on Sunday night, it would be tough on Nancy for me to be in the TLF and start that over again in the middle of the night and have her try to get me to the emergency room in time. Well the fight is on over what is going to happen to me for this bone marrow transplant. Since I am active duty right now, the Air Force or Tricare would be responsible for paying for this procedure (approximately $250,000 - $300,000). That is if I stay active duty. The push is on right now to have me medically retired and have the VA pay for the procedure. Since none of my brothers or sister match my bone marrow, I have to go out to the National Marrow Donor Program to try and find what is called a Matched Unrelated Donor (MUD). Basically they match my blood to the blood of folks who have signed up to be marrow donors to see if they can find a preliminary match. Right now they have found 13 people who match me on the first test. Until they decide who is going to pay for this transplant, they can't find me a transplant center to start doing in-depth testing on these people to see if they match me well enough to be my donor. Every day wasted is a day I could relapse before I get the transplant. It usually takes 3-6 months to go from finding a center and having the marrow there for the transplant. If the Air Force or Tricare pays for the procedure, there is no telling where I will go. If the VA pays for the transplant, I will either go to Vanderbilt University in Nashville, TN or the Puget Sound VA Center in Seattle, WA. They have told me they are pushing it up to get it all resolved and find me a center so the process can begin. Nancy left yesterday and visited with the kids at my sister's house in Gulf Shores, AL. She is keeping them during spring break while Nancy's mom takes a break back in Madison, MS. I talked with the kids and they were all thrilled to see Nancy. She spent the night and came back today. Next week the kids will be back in Niceville with Nancy's mom. That's about it here. I have been receiving a lot of cards and letters from folks. Almost all of them are from folks who are praying for me and my family and I just want to say I sure do appreciate it. I can't even count all the blessings Nancy and I have to be thankful for even in this period of tribulation. Please keep us in your prayers. It is what is sustaining us. 27 Mar 01 Whew! Where to start. I thought everything was going smoothly after I finished my chemo on Friday. I went neutrapenic (no immune system) on Sunday morning and had a visit from my family and an old friend. We took all the neutrapenic cautions (everyone washed their hands and I wore a mask). By Sunday evening about 1800, it was obvious things were not right. I started having some severe pains in my calves, thighs, shoulders, arms, wrist and back. Very deep bone aching pains. Then my temperature started rising through 102. As I tried to get up to go to the rest room later that night, I couldn't make it and passed out in my room. Prayerfully, Nancy was with me the whole night and she was able to catch me before I busted my cranium open or worst. I now became a big priority in the hospital. They were monitoring my blood pressure every ten minutes and it was dropping steadily. When it reached 60/30 (normal is twice each of those numbers) they transferred me to the Intensive Care Unit (ICU). Here was the adventure of a life time you only want to read about. They hooked me up to every medical machine known to man and put a tube in any place that would fit one. By the time they finished hooking me up I looked like a Borg from Star Trek who had been taken down. They put me on three of the strongest antibiotics known to man and ran some cultures of my blood. Over the next 24 hours my temperature was slowing lowering to the 101s and my blood pressure was up to 90/50 (not great but getting better). They told me to expect to be in the ICU for four to five days. But praise the Lord, I continued to get better and on Tuesday afternoon they sent me back to my hospital room with a normal temperature and normal blood pressure. I have steadily become stronger since then and prayerfully on the road to recovery. I am still taking the triple whammy of antibiotics and I probably will continue on them for about 14 total days. The cultures show that I had some skin bacteria get into my blood. For a person with a normal immune system, that's ok. Your body knocks it out as soon as it crawls in. When someone is neutrapenic, it can be a death sentence. Now let me tell you the cool things about this adventure. Nancy was amazing. She was a cool as a cucumber when I passed out and did all the right things to get me in a position of stability. Then she called the Calvary and didn't leave my side the whole night. The other cool thing we did was prayed. Not desparation prayers for my healing but for the Lord to wrap his loving arms around us and carry us through this. And He did. We talked about it yesterday and we both felt we had nothing to worry about (no matter how it turned out) because the Lord was in control and you can't get any better than that! Well, I'm feeling about 85% now. I'm getting platelets, red blood and antibiotics all day today. I will probably be in the hospital until at least next Monday, then maybe released to the TLFs. It is better to be away from the hospital when you are neutrapenic because of all the germs running around this place. I think we just proved it again. Thank you all for the emails and signing the guest book. I don't always get a chance to answer the emails (especially when I'm in the ICU) but I read them all and I read all the guest book entries. Please keep the prayers coming. There is no single act anyone can do for us more important than to say a prayer for us. 21 Mar 02 I am sitting in my hospital room at Keesler AFB, MS waiting to go to bed. Things have settled down quite a bit since I made my way over here last Monday. Here is a quick "fill-in" on how I got back in the hospital: As you may recall, I came back from my 3 month check-up on 20 Feb 02 with a clean bill of health. On 27 Feb 02 I started to get a rash on my right arm which spread to my left arm and then to my chest. By Wednesday I had progressed to a full chest cold but I had no fever. On Saturday, 9 Mar 02 nothing is getting better and the rash is getting much worst so I called the oncologist at Keesler and they told me to have a work-up done by the flight surgeons and see if I needed to come to Keesler. I started to run a fever on Sunday and went to see the docs on Monday. Needless to say, the flight surgeons were not happy with what they saw, but you really could not tie it into leukemia. It had all the indications of a rash and a cold and that's it. After much thrashing, I came to Keesler on Wednesday, 13 Mar 02 and had a bone marrow biopsy done. The results were inconclusive, so they sent me home and waited for the results to come back from Wilford Hall Medical Center. After I was sent home I started running 104.5 fevers on a daily basis, twice a day about the same time. On Friday, they called and said my bone marrow had 35% leukemia blast in it and that I was in relapse. I was given to the option to come in on the weekend and have some temporary lines put in or wait until Monday and get a new Hickman for the treatments. Since the Tylenol was controlling the temp and the rash looked like it was getting better, I elected to wait for Monday. Bad call. I really went down hill over the weekend and by the time I showed up at Keesler on Monday, I looked like Frankenstein's Monster. The Rash had spread to my neck and face. I had these huge growths in my neck and my right eye was completely shut and swollen. I could barely swallow and was running those high temperatures. Well, to try to make this story shorter, it turns out the rash is another bout with Eosinophilic infiltration. As you may recall, I had those eosinophils attack my intestines a year ago and we went off on a wide goose chase thinking that was my problem. This time they were (are) attacking my skin (which is the body's largest organ). They have me on massive steroids to try and reverse the infiltration and so far I am getting better. It just turns out that when my body has active leukemia, it produces too many eosinophils and they run out and find something to attack. Now for the leukemia. I am taking two new drugs to get me back in remission. Mitoxantrone and VP-16. They have the usual side effects: loss of hair, mucusitus, nausea, ect. So far I am complete with day four. Tomorrow I will do day five, which is the last. I have had no side effects yet from the chemo. Although I do expect to have to shave my head again soon. We could be released to the Temporary Living Facility (TLF) on Monday and come to the clinic daily for the next few weeks while I ride out another lost and recovery of my immune system. After I recover my immune system, they will do another BMB to see if I am in remission again and can then proceed to the BMT. I will talk about the BMT later when I get more data. Well, that is it. Nancy and I have been praying for answers and the Lord keeps coming back with the same answer. Be patient; follow me; I am in control. When I look back over the last six months, I have not done a good job of that. I spent a lot of time and energy trying to get my life back to normal. The Lord has shown me once again that I can trek off and do whatever I want, but if I want to do it the easy way, follow Him. It is taking me a little while, but watching all my work to get back in the cockpit blow away like dust on the runway in a split second, I know I am not in control. That is my big challenge for myself this time around. Be patient, follow the Lord for he is in control! God Bless you all. Keep the prayers coming. |
Mach's "Relapse until BMT" Journal |
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