Steve's Corner

Seasons Past

noreply@blogger.com (Angeluna) — Mon, 15 Dec 2008 06:45:00 +0000

The family is heading into the first Christmas without Steven. Still pretty much in shock. Poor guy spent his last Christmas in the hospital, as well as New Years, Valentines, his birthday, the kids birthdays, Easter, Memorial Day, the Fourth of July and Labor Day. He said he just couldn't catch a single holiday with his family. Thought you might enjoy a look at Christmases Past.

With his little brother on Santa's lap. Probably asking for a toolkit. The boys are wearing their handknit Aran sweaters.
A New Orleans Christmas with the stepsisters. How he loved a big family.
With his little Princess!

And with his precious family!

The Way Things Were

noreply@blogger.com (Angeluna) — Sun, 05 Oct 2008 06:09:00 +0000

Steven always loved the mountains, here in Switzerland.

On Thanksgiving one year ago, the world seemed normal. Steven had Thanksgiving dinner for the whole family at his house. He actively helped Lisa with the dinner. I noticed he had to rest several times and that he really looked terrible. I was very concerned and insisted he go to the doctor immediately for bloodwork. But who had any idea what the terrible diagnosis would be?

We have all made it through this anniversary Thanksgiving without Steven. Lisa and the kids went to her brother's in Florida. David and I went to Alex's. Having it be totally different probably helped us through.

Here are some photos of happier times, the way we want to remember Steven.

Here at three, a happy little "blonde".

On top of the Pyramid of the Sun at Teotihuacan with the Pyramid of the Moon in the background.
In New Orleans, playing Monopoly with David, Lydia and Alexa.

Steven and Lisa on their wedding day, with his Andrews grandparents. His Grandmother was very ill at the time, but she didn't want to miss his wedding.

Steven and Lisa in Budapest at Gerbaud's.

Alexa finally arrives, utter joy. Steven and I had a quick lunch of chicken fried steak at his old favorite, Massey's, while we were waiting. He was so anxious, he couldn't wait to touch her.

Then Andrew comes along, just look at Steven's face!

A trip to New Orleans to show Andrew off to Paul. Can't even imagine Paul kissing babies but here's photographic proof.

Again, I want to say thank you to all the friends who helped us all get through this terrible time. And thank you to Steven's donor who gave him a chance. And a huge thank you to the staff and doctors on the Bone Marrow Transplant floor. All of the nurses who knew him so well and had been kind and efficient through some terrible times, became angels there at the end. I thought I would remember everyone's name forever, but somehow I have forgotten many, although not their faces and their kind acts. I do remember big, strong Darnell who was there for just anything Steven needed that last week. Bless them all.

Very Sad News

noreply@blogger.com (Angeluna) — Sat, 20 Sep 2008 03:19:00 +0000

Steven lost his epic battle with leukemia today. He died around noon. Lisa was with him.

There will be a memorial service for Steven on Monday, September 22, at 11AM.

New World United Methodist Church
2201 North Davis Drive
Arlington, Texas 76102
817.460.4212

Lisa asked that in lieu of flowers, since there is no funeral, donations may be made in Steven's name to the Leukemia Lymphoma Society North Texas Chapter, (8111 LBJ Freeway Suite 425, Dallas, TX 75251, 972-239-0959) or to:

Rutledge Childrens Education Fund
Chase Bank
755 W. Lamar Blvd.
Arlington, TX 76012
(or directly to Lisa)

Steven asked me to keep his website and blog up for a while. He hopes it can do some good for other people going through what he did. So stay tuned. I think there will be a series of family photos and little stories. If you have some good ones of either, just send them on. Or just share your impressions of Steven.

Things as They Are

noreply@blogger.com (Angeluna) — Thu, 18 Sep 2008 19:46:00 +0000

Steven's condition is deteriorating much more quickly than any of us had expected. He is now on oxygen full time. When he removes the mask to talk, he gasps for breath. He has almost stopped eating. But his sense of humor and his caring for others is still intact.

Although we had plans to bring him home, for his comfort, he decided he wanted to remain in the hospital. He said he was born there and he would just stay there now.

He is surrounded 24/7 by family. The family requests no more visitors at this time. Please direct any phone calls through a family member. We thank everyone who has supported Steven during this long ordeal that he fought so bravely.

At Loose Ends

noreply@blogger.com (Angeluna) — Wed, 17 Sep 2008 05:28:00 +0000

I don't know quite what to say, but I know so many of you are waiting for news, I will try to bring things up to date.

Steven is still in the BMT Hospital. They are caring for him and the after effects of the last chemo. Very sore mouth and throat. Mucosis (thick ropes of mucus) which almost chokes him and must be coughed up with much effort. Steven used a suction device during the last round, but really damaged his mouth with it. So he is going without that at the moment. His oxygen saturation isn't great, so he is intermittently on oxygen. His legs are very swollen. These are mainly all results of chemo induced malnutrition. He is having fevers, whether due to infection or leukemia we don't know. Leukemic blasts were 90% of his peripheral (blood) counts. His immune system will never recover. At this point, the only thing keeping him alive are the blood and platelet transfusions.

They are giving him morphine to help deal with the mouth/throat so that he can eat more, which would help several of his problems. The morphine makes him goofy sometimes, about which we tease him. Then he has short periods of total clarity.

Lisa is concerned for the children with the idea of Steven coming home with hospice care and has decided not to do that. We are investigating bringing him to my house and trying to continue the blood and platelet transfusions with other support. It will take some negotiations. His brother is working on the practical issues. One of his stepsisters flew in Tuesday to be with him and the other one arrives Thursday. They do not want to leave him alone for a moment and would come to help take care of him.

The vague plan for now is to stay in the hospital a few more days to take care of the chemo issues. If his mouth gets better, he could lower the morphine doses. They give him a lot of support which would be impossible at home. Then we will see how much care Hospice will allow us to give.

So many people are wanting to visit. Steven becomes confused when there are many visitors, although he appreciates everyone's kindness. It is also an infection risk for him. Please check with a family member as to whether it is possible and if so, what time would be best. Steven knows time is short and he is trying to take care of all sorts of life's details in his clear moments, mainly worrying about how to best take care of Lisa and the children.

The weather is beautiful in our little bit of Texas. Crisp bright skies, plants green from the rains of the last hurricane. It doesn't seem right to me. It should be grey and gloomy.

They've Pulled the Rug Out from Under Us

noreply@blogger.com (Angeluna) — Sat, 13 Sep 2008 04:52:00 +0000

Friday, September 12, 2008 - late

Dr. Agura called today and asked the family to come to the hospital this evening for a meeting. Basically, they can't go forward with the transplant. A bone marrow test yesterday shows 90% leukemia in Steven's marrow. They wanted to discuss moving him to hospice care. Agura did say they could keep him at the hospital for up to a week so he could get blood transfusions, etc. They are moving him tonight to one of the other halls in the BMT unit, out of ICU.

Agura said he had called MDAnderson and didn't think there was anything to do that they hadn't already tried. He said that getting into trials takes time and that Steven doesn't have time. Steven has one of the fastest growing leukemias Agura has ever seen.

Steven was feeling better today and able to talk. Not confused. Walked, worked on his computer. Called a lot of people. Was laughing and asking how everyone was doing. They moved him tonight because he wanted a refrigerator and there isn't one in the ICU. The hospital is preparing for hurricane transfers. Once he arrived in the new room, with five of us to help him, he worked like a dynamo to organize everything just like he wanted it. I always reclean a new room when he moves in with Clorox wipes (amazing what the crew doesn't clean). Steven used to laugh at me or roll his eyes and say "Mother", now he refuses to put anything in place until we have done the antiseptic wipe down. So the six of us scoured the room before he could relax.

Steven needs some time to process all of this and make some decisions. He asked for no visitors on Saturday and no phone calls. After the meeting with Agura, he said he just needed to sleep. He is so tired. Lisa is spending the night with him tonight. Hoping I can get there tomorrow through the hurricane's tempests and take over the next shift.

We will post again here when Steven feels up to visitors and calls. We so appreciate everyone's concern and kind wishes.

The Ordeal Continues - Day 13

noreply@blogger.com (Angeluna) — Fri, 12 Sep 2008 00:24:00 +0000

Steven was moved today to the ICU on the Bone Marrow Transplant floor in Collins. Probably not a good situation for visits. Nothing has changed much from yesterday, they just want to keep him under closer supervision. It is a relief for us as we know they take very good care of him there.

David was there for the move. They sent a transport guy who had a cold, but came in the room with no mask, gown or gloves and started handling things. David told him to put on all the above and he still didn't, sort of laughed. David told him he was dead serious so he finally masked up. By the time he got to the elevator, the mask was off again. David was furious at the stupidity of it all.

The Bone Marrow Donor Bank has requested proof that they have the leukemia in remission before they will request the donor work-up. So I suppose they will have to do another bone marrow biopsy, then wait for the results, then wait to send it in. The week-end is upon us. So it looks like a 3 week delay in starting the donor work-up. I could scream!!!! Headed to the hospital now.

The Ordeal Continues - Day 12

noreply@blogger.com (Angeluna) — Wed, 10 Sep 2008 19:04:00 +0000

Steven showed a lot of confusion last night. He was so unsteady on his feet that they put him on bed alert. Which means an alarm goes off at the nurses station if he tries to get out of bed and four or five people come running. The nurses said if this continues, they will try to move him to a room closer to the station.

The mouth sores are so bad that we can no longer understand his speech on the phone (nor in the room last night). The more miserable aspects of chemo, vomiting and intestinal, have started up, too. I went with my cousin Wendy who came up from Austin to see Steven. He couldn't keep his eyes open.

Better news is that the fever has not gotten higher than the low 100s and last night it was normal. Dr. Agura came to see him yesterday for the first time since he's been in the hospital. Steven did tell us that but couldn't tell us what he said.

Lisa will be visiting tonight and will give us an update.

The Ordeal Continues - Day 11

noreply@blogger.com (Angeluna) — Tue, 09 Sep 2008 22:48:00 +0000

Steven is feeling really sick today. They haven't gotten the bronchial infection under control so he is having fevers. Nothing has grown in the cultures yet. Throwing up, and with that horribly sore mouth and throat, it's not fun.

His platelets were 6, way low, so he got a couple of bags. They were worried about a fall or a cut. They don't even want him to use clippers on his fingernails at this point.

We were trying to get a picture for the blog last night, when he was feeling a bit better. It got quite funny, but here are a couple Steven took with his laptop. The laptop angle is never the most flattering shall we say, but you can see by the way he is holding his mouth that it is swollen and painful. In the background you see his tower with all the "stuff" they are filling him with constantly.

He is wearing reading glasses to see these days. He thinks it's the chemo. Might just be his age.

Steven still enjoys visits from his friends and can still laugh. But please observe health precautions. Not more than two people in the room at a time. Clean clothes or wear a gown of which there are plenty provided outside his door. Wash hands when you arrive on the floor, then use the antibacterial foam at his door. Stay well back, no touching. And if you are sick or have been exposed, this is not the time to visit. Infections are his worst enemy at the moment. Viral, fungal and bacterial. Thanks.

If you call, you will find he has a bit of trouble speaking clearly because of the mouth sores.

The Ordeal Continues - Day 10

noreply@blogger.com (Angeluna) — Mon, 08 Sep 2008 20:56:00 +0000

Blasts were at 1% today. YAY!!!!

Throat still worse. Steven is reduced to pudding and ice cream for sustenance. Heart rate is running quite high. But kidney numbers are staying not too bad, which is very good. He's picked up some sort of respiratory infection. They took samples to do a culture.

I called the donor search coordinator to see if they had any word yet on availability of the chosen donor. Nothing definite yet, but from e-mails she received, she knows they are working on it. Slow as molasses that National BMT Donor Bank. But, they're the only game in town. Patience, patience, patience.

The Ordeal Continues - Day 9

noreply@blogger.com (Angeluna) — Sun, 07 Sep 2008 20:34:00 +0000

More of the same. Yesterday's blast count was down to 8%, in two days from that very scary 93%. It shows that the leukemia is responding to the chemo, but they have to get every one of those nasty little cells. We don't yet know today's count. Fingers crossed.

Steven's mouth and throat get a bit worse each day, but so far he has managed the other common chemo side effects.

Steven was in such pain last night from his throat that he called me at 3:30AM and again at 4:30. A nurse (Tanila or Tekwila or somesuch) came in and changed his lines incorrectly, reconnecting them with old bags which is an infection risk. He said she messed around with them for ages. Then she took his prepared pain shot and pushed and pulled the syringe until there was almost nothing left before injecting it. So he was really in pain and couldn't get another shot, or another nurse, for hours. He was afraid to call or she might come back and do worse to him. I called the nursing station and asked for the charge nurse and told her there had been a problem and would she check with him. She did come in rather promptly and told Steven she would prepare another shot and that the first nurse would come back to administer it. Well, two and a half more hours passed before she finally showed up, which was the time he would have gotten the next shot anyway. Evidently she was a temp nurse they weren't happy with anyway. Hope he never sees her again. But Steven really felt he was at their mercy last night and was afraid to make trouble.

Some nurses don't like to give out pain medication, which mystifies me in a case like this. They were a bit difficult this morning and called the doctor about it after Steven spent a night unable to sleep. Pinheiro took care of the problem by doubling the dose, bless him. Studies have shown that when patients are allowed to control pain dosage with a pump, they tend to use less and not more because they are in control and know that it is there when they really need it. Guess we need to ask for a pump.

Our dear Brazilian friend Marta, recuperating from her second transplant and doing well, cooked several meals for Steven and brought them to the hospital. A wonderful Portugese Rice dish which was just perfect. Having been through this, she knows what is just right. She loves to cook and we are so happy that she is back in the kitchen after all she's been through. So are her teenagers.

Steven had eight people in the room a little while ago, visiting and watching the game. Can't even imagine how they all squeezed in. He sounded quite animated. He is surrounded by love and support.

The Ordeal Continues - Day 8

noreply@blogger.com (Angeluna) — Sat, 06 Sep 2008 06:08:00 +0000

I'm sitting in the hospital room with Steven at 1AM watching Trains, Planes and Automobiles for the second time. Very important to have a belly laugh when you're sick (even though it hurts).

Still waiting and watching the counts. Yesterday, the blast count was at 93% which sounds absolutely off the charts terrifying, but today that had dropped to 25% which looks a lot better. Everything else has also dropped precipitously. Kidney numbers have risen a little, so have liver numbers, but suppose that is to be expected.

The horrible, awful dreaded mouth sores are coming back. Today he feels bruised all over, as though he'd been thoroughly stomped. He hasn't had that symptom before. And his throat hurts a lot, as though there were a golf ball in the back of it. A couple of Dilaudid shots have taken the edge off. He's joking with me now that the pain has eased.

Good news is that he still has a decent appetite and has been able to keep food down so far. Food tastes less weird than it has with other chemos for which he is grateful. Hope that lasts. It is important to try to keep his weight up. Steven started this chemo more than 60 pounds lighter than his previous weight. Although amazingly, he has gained eight pounds since he came into the hospital last week.

One effect of several rounds of chemo is that your finger and toe nails grow in bands. The chemo kills the nails, then new nails grow underneath and push the old ones up and off. To try to hang onto some of the nails instead of flipping them off to bare nailbed by accident, we painted Steven's nails with some Calcium Gel Strengthener tonight. We'll see if that works. Looks like he had a fancy pro manicure.

Alexa played with the marching band for the second time tonight. Steven was really upset to miss her first game performance last week when he came back to the hospital. He had planned to go to all the games with her. So Zsa-Zsa (me) went to the game with a camera. Called Steven to let him hear the band at its peak and then he spoke with Alexa who was delighted to share this with her father.

Steven says he feels stronger than he did during those last rounds of the previous chemos. Perhaps because he had a couple of months break post transplant. In any case, his spirit is absolutely fantastic and he laughs constantly. This will help him get through whatever is to come.

Andrew was sick yesterday. Hope he gets well enough to come see his Dad this week-end. Last week, he and I got stuck in a hospital elevator for thirty minutes, with a cranky old guy on a guerney, his wife in her pajamas with high heels, pearls and handbag, and two youngish med techs who became rather hysterical. Then old guy on guerney got hysterical and kept shouting he was claustrophobic. Andrew's eyes were getting bigger and bigger as sweat began to run down everyone's faces but he managed to hold it together quite well, balancing three desserts in his hands the whole time. We had gone down for a snack and everyone was wondering where we had disappeared. Made a good story for Andrew to tell.

The Ordeal Continues, Day 7

noreply@blogger.com (Angeluna) — Fri, 05 Sep 2008 07:15:00 +0000

The wait continues, anxiously watching Steven's counts. His leukemic cells were 81% of blood volumne today. I don't know quite what that means, but they are expecting this number to drop. His kidney numbers have started climbing. All they can do during this period of the chemo going about its work is support his body and watch.

The worst effects of chemo have not hit yet, although Steven is more tired. He said he feels bruised all over.

Again, thanks to everyone for their kind support. Although Steven is not able to work on his computer right now, I do tell him about everyone's e-mails and well wishes. It means a lot to him and he is cheered by each one of you who writes. This is a huge fight he has undertaken and a positive attitude is vital.

The Ordeal Continues, Day 6

noreply@blogger.com (Angeluna) — Wed, 03 Sep 2008 21:36:00 +0000

Chemo infusions are over. They are taking pretty good care of Steven on 6 Roberts. He is neutropenic, but no infections or fevers or vomiting or intestinal problems (yet). His creatin is within normal range, although the BUN is creeping up a bit. Liver numbers still good, too. They lowered the amount of fluids they were giving him today, which should allow him a little more sleep. His heartrate is more stable.

Miracle of miracles, the insurance seems to have approved a second transplant (verbal, not in writing yet) and the team has requested a work-up on a donor found last time. A double C mismatch. They had two or three others that were the same as his first donor, a single mismatch, but they decided to go with one which might give more GVHD. If everything went as smooth as glass (which we know it never does), we could be looking at an early October transplant. That would depend on if the donor is still available and willing, passes the physical, and can schedule the draw quickly. Now we have to see how Steven gets through this chemo and how effective it was on the leukemia counts.

The Ordeal Continues, Day 5

noreply@blogger.com (Angeluna) — Tue, 02 Sep 2008 18:46:00 +0000

Today Steven will receive the fifth and final doses of this chemo round. And then we wait and see. He will receive blood and platelets today.

His counts are now down; he is neutropenic. Which means he has no immune system.

Visitors should take precautions. If you have any infection or have been exposed, please don't visit at this time. If you do visit, wash hands thoroughly before entering the room. Use the hand disinfectant available at his door or in the room. And no touching, not even a handshake. Keep a distance of several feet from Steven.

Steven is still doing pretty well and in decent spirits. His step-sister Lydia is flying in this afternoon to see him.

The Ordeal Continues

noreply@blogger.com (Angeluna) — Mon, 01 Sep 2008 09:15:00 +0000

The chemo round is proceding. Started finally late Friday, that makes three of the five days treatments already given. Steven is having headaches and quite high blood pressure which is of concern. Strangely since one of the drugs is actually supposed to lower blood pressure. They are giving new drugs for that and have doubled his regular heart medication, too.

One really frightening thing about chemotherapy is that once it is set in motion, there is no way to stop the action of it as it progresses for days and weeks after the last dose is given. We haven't seen Dr. Agura since the move to 6 Roberts. Dr. Fay has been checking in on rounds, and perhaps it will be someone else with the new month. Not sure.

The IV nurse had made quite a large incision when they put in his lines. It is bleeding some and too open, which of course invites infection. It was really bothering Steven until we got some ice packs on it, which gave some relief.

The blast level was 14% Tuesday, 29% Wednesday and 53% Thursday before they finally got the chemo started on Friday.

Steven is still in good humor, taking some walks and having visitors, although he is starting to seem more tired. He calculated that he had spent every single birthday, holiday and celebration of this past year in the hospital.

The Ordeal Begins...Again

noreply@blogger.com (Angeluna) — Sat, 30 Aug 2008 12:12:00 +0000

Yesterday, they finally got Steven's platelets high enough to install the PIC Lines and began the chemo round. Five days of two drugs (one is blue and will make him pee green) and then the wait for them to do their job and the slow countdown until his counts start coming back in. One upside of getting the lines in is no more 4AM gouging to find his veins.

For some reason, Steven's neck glands were swollen yesterday morning. They think the prednisone they give with the chemo will help that. And he had a really massive headache for which they finally had to give him some good drugs. No fevers, although his blood pressure shot way up. They were monitoring that closely.

Many of the nurses on the floor remember Steven from January when he did his second round of chemo there. Wonderful quiet, caring Linda was there again last evening. It was good to see her and know she would look after him through the night.

Other than that, Steven was in pretty good shape. Alert, laughing and joking. Managed to eat the hospital dinner, although breakfast was totally impossible. They finally managed to scrounge some Cheerios for him. His uncle brought him a hamburger for lunch. His brother came in the evening bearing Haagen Daz, dark chocolate Reeses cups and Mug Root Beer. I picked up Lisa and Andrew and we brought Fiji Water and Gatorade drinks to fill the fridge now that he has one in his room, along with white bread and peanut butter. The chemo changes the flavors of everything and these were the tried and true items he seems to manage best. We also brought his chess board so that he could play with friends over the long week-end.

One couldn't ask for a better attitude and more quiet determination than Steven is showing. His doctors are impressed.

A Day Wasted

noreply@blogger.com (Angeluna) — Fri, 29 Aug 2008 04:24:00 +0000

Thank goodness Steven was finally moved to the cancer floor about 10 tonight. He is in room 631 in the Roberts Bldg. The new phone number is: 214.818.7681

The floor he was on was terrible. It took them an hour to respond to a call. They left in his platelet bags long after they were empty and his blood washed back up into the bag. The IV team never got the lines in so that they could start the chemo. It was a completely wasted day of great anxiety. Steven is ready to get on with it and at the rate the leukemia is coming back in, it can only have gotten worse. Totally frustrating. In an entire day, the only treatment he got was two bags of platelets.

Here's hoping that his platelets will still be high enough to install the lines in the morning and they will get this show on the road.

Steven said he absolutely can't bear to eat hospital food anymore. At least in the new room he has a DVD player and a fridge. Several friends and family came to visit which made the day pass a little easier. Steven actually sounds quite hearty. He said he can't believe he is so sick because he doesn't feel that bad.

Wherein He Decides to Fight

noreply@blogger.com (Angeluna) — Thu, 28 Aug 2008 05:51:00 +0000

Steven has decided to continue the fight. We are behind him with all our strength. The leukemic blast level in his blood yesterday was 14%, today it was 29%. 24 hours and it more than doubled. It boggles the mind.

A long, long day lying in a bed at the clinic. Steven needed two units of blood and a new PICC line and fluids and a heart test and a bone marrow test. When I picked him up going to the clinic this morning, I told him he should pack a bag. Dr. Agura saw me in the hall and said, "I've decided to admit Steven to the hospital." I laughed and said I knew that already and he had his bag with him.

Dr. Agura came up with a plan. Two new chemotherapies that have not yet been used. Hoping to buy time while they do a frantic search for a donor. Time is truly of the essence this round. It can't be four months like the last time. Steven's body could not take the repeated chemos necessary. The idea is to find a different donor whose system would fight the leukemia cells harder.

Steve knows how difficult these chemos will be and he knows the odds for success are reduced, but he has been fighting for so long that he doesn't want to throw in the towel now.

It's amazing what two pints of blood did for Steve. Like watering a thirsty plant. He turned a nice color and energy returned to his voice. He cracked a joke or two and spoke positively about the upcoming treatments. Dr. Agura said that except for the leukemia, he was a healthy man. His numbers are still relatively good, although the doctor said that by next week that would change. There is not a minute to waste.

We waited all day for a room. The hospitals are full. They finally found a room on the 12th floor in Roberts but will hopefully be able to move him soon to at least 6th floor of Roberts, the cancer floor, if not into the Bone Marrow Transplant Unit, which of course we would heartily wish for. Steven said it took them almost an hour to answer a call tonight. The IV team never arrived to install his lines, so we hope they get there early tomorrow. They can't start the chemo until the lines are in place.

For those of you who would like to visit, the next few days would be a good time before Steven starts to get really sick again. Also for phone calls. I am sure he would appreciate any support you can give.

And for the many who are praying for Steven, please ask that the perfect donor be guided to act quickly and to give Steven the strength to get through this ordeal.

Thank you to everyone for your continuing support. It is a great comfort to us.

Unwelcome News

noreply@blogger.com (Angeluna) — Wed, 27 Aug 2008 06:36:00 +0000

Today we heard that Steven's leukemia is back aggressively. Last week his blast (leukemia) cells were 0, this week they are 14%. It was such an unbelievable change that the doctor went to check the slides himself.

The doctor said many patients at this point choose to do no more therapy. He would live about a month.

The alternative is to start chemo immediately (which means being very ill again) and start to look for another bone marrow donor. Evidently this donor was too good a match for Steven, even though there was a single mismatch, and never caused graft host disease which they want to some extent.

Steven has to decide tonight and we go back to the hospital in the morning. He is very anemic and needs blood and platelets, needs to install another central line and have a bone marrow biopsy.

Steven's first reaction was that he had already fought this long, why would he give up now? He certainly knows what is involved. He is a brave man and of course his family will support his decision 100% and go into this positively and with hope.

Please keep Steve in your hearts and prayers.

It All Depends on Who You Listen To

noreply@blogger.com (Angeluna) — Wed, 20 Aug 2008 06:00:00 +0000

Hmmmm, in two or three appointments with the nurse practitioner Lowell, whom we like a lot, Steven was told that the flow cytometry tests showed a miniscule amount of leukemia coming back. Then at last Tuesday's appointment, Dr. Agura said he saw no leukemia in the hand done tests, that the donor's DNA was showing up 100%, and that he wasn't worried at this time. When we asked him about what we had been told about the leukemia returning, he said he didn't see it, but one could read the same report different ways. Frankly, we prefer Dr. Agura's version.

Agura did take Steve off his Prednisone and said he would shortly also take him off the very low Prograf dose he is still taking. Since Steve is only 3 and a half months out from transplant, that is incredible. Normally with an unrelated donor one would need to take anti rejection meds for a year to life, especially when it was not a perfect match. For some reason, Steve is so far showing none of the symptoms of graft/host disease. Everyone else we have been following with similar transplant times has had some degree of graft/host, and they were all perfect donor matches. Actually, they would like Steve to show some GVHD because it should also fight the leukemia more. But...so far, so good. We shall see what happens when they remove the Prograf completely.

Last Friday, Steve saw the heart doctor who said everything looks good for now, but that he would probably have to take the heart medications for life. They will check it again in six months. When he started having the heart problems way back in January at Baylor Irving after he contracted MRSA, the heart wall had thinned and separated. It looks good now, but the doctor thinks it is the heart meds which are keeping it in shape and that if he removed them, Steve might go back to having problems in a couple of months. On the other hand, Dr. Agura thinks that Steve's heart has a good chance to repair itself and that he might be able to drop those meds somewhere down the line. Hmmmm, still again we shall see.

This last Monday, for some reason all Steve's counts that had been looking so good dropped. White cells, hematocrit and platelets. Steve's hematocrit was actually just 3/10 of a point above automatic transfusion level and normally they would have given him blood. But Dr. Agura wanted to try giving him a B12 injection and putting him on high B vitamins to help him with his counts. So once again...we shall see. The doctor also put him on a weekly appointment level which is nice. Next Tuesday will tell if the vitamin strategy does the job.

Changing all of his medications around has left Steve quite tired. Coming off Prednisone, he "hit the wall" but is starting to feel better. They lowered his Bactrim dose to preventive, not treatment, level and they also halved the dose of Coreg, the heart medication. It will take a few days to see what happens there. Every reduction in the handfuls of pills he has to take is welcome. Steve actually changed a tire on Lisa's car the other day, but ran out of energy with two lugs to go.

Steve asked Dr. Agura if he needed to find a new internist for routine health problems, but Dr. Agura said he will be his doctor for everything for the next five years. They will keep checking Steve's bone marrow regularly to keep an eye out for the leukemia.

So all in all, things are going pretty well all things considered and we have high hopes for more energy soon. Bless Steve's donor once again. Life is good!

A report on nearing three months post transplant

noreply@blogger.com (Angeluna) — Wed, 06 Aug 2008 04:12:00 +0000

Steve still isn't able to post because of problems with his eyes, probably a chemo hangover. He has felt a bit better this last week since Dr. Agura downsized some of his medications. He got the throwing up under control and was steadier on his feet.

Last Friday, Steve had his almost 90 day bone marrow biopsy. Preliminary results today showed a very small percentage of blast cells again. Although they are not showing up in his blood and his marrow still reads 100% donor genetics. First round of treatment is to reduce still further his anti-rejection drugs. The transplanted stem cells work as an anti leukemia drug in this case. Steve will possibly see some graft host disease problems, usually rashes, digestive problems and nausea.

They took a second blood draw today to do a fractional chimera (chimera due to his double DNA) test to pinpoint which of the cells are showing the problems. We hope to have further more detailed results on Friday.

In and Out

noreply@blogger.com (Angeluna) — Thu, 17 Jul 2008 10:28:00 +0000

Steve is back out of the hospital. Eight days this time. They finally pulled his IV-line the day before he left, but didn't replace it. They gave him platelets every day so that they could install a new line, but the IV team just never showed up and Steve was insisting to go home. We shall see how it goes at the clinic today with multiple "sticks".

Here are photos from a few days ago. Still bald and missing most of his eyebrows.

This is what happens to Steve's feet when his kidney function isn't so great. They are back down to skinny now, and this is nothing compared to the bout he had a few weeks after his transplant.

His stepfather Paul came to visit this past week-end with his wife Betsy. They arrived bearing Neuhaus dark chocolate and a bag of books for Steve. He and Betsy are both Sci-Fi fans. A big celebration dinner had been planned at Steve's favorite Italian restaurant, but since Steve was in the hospital, it is postponed for a month or two.

Betsy is trying to block the light that was bouncing off Steve's shiny pate.

Lisa has an operation scheduled for today. Sending her all best wishes for an easy time of it.

Dejà Vu All Over Again, Back to a Pink Room

noreply@blogger.com (Angeluna) — Thu, 10 Jul 2008 18:33:00 +0000

Here's Steve in a photo from last week, waiting for his blood draw.

Well, after a few weeks of doing well, Steve started feeling pretty rotten, very fatigued, blacking out and a handful of other strange symptoms. We ended up going every other day for tests and blood and plasma transfusions last week. His kidney function was dropping, his blood pressure sometimes extremely low. Then Sunday night it became really bad and Monday we went to the clinic.

He couldn't walk without passing out (he had to come down the stairs at his house sliding step by step on his bottom), so transport was by wheel chair. The clinic was extremely crowded after the holiday week-end. Steve looked like he was about to slip out of the wheelchair in the waiting room, so I begged a bed or at least a recliner in the infusion area. He was shivering and shaking and his feet were burning painfully. As cold as he was, he couldn't stand even a sheet touching his feet.

They began drawing blood and blood and more blood for tests. Long story short, Dr. Agura put Steve back in the hospital. There were no beds on the BMT floor, so they put him in the ICU in the main hospital. It was quite a shock after the caring and knowledgeable staff at the BMT. Transplant patients are so specialized in their care and treatment and the nurses in the ICU didn't have a clue. Plus family access in the main hospital was much more restricted and I kept tangling with the staff. I didn't leave until the middle of the night after being sure they weren't going to do Steve any harm. If they were running a popularity contest with those nurses, I would not have won any points.

After a night there, they managed to find a bed in the BMT ICU for Steve. Then in the middle of the night on Wednesday, they moved him off the BMT ICU into the main wing. Someone needed the ICU more than he did. All the nurses told him how good it was to see him again. Not that Steve loves going back to the hospital, but at least they inspire confidence that they will take care of him.

Early tests show he has a bacterial infection and EBV (Epstein-Barre Virus). EBV causes mononucleosis amongst other things. Steve is being treated for these and they say he will be in hospital for about a week. They have no idea what caused the foot pain but it is gone. He is in room 428 and can have visitors. He is feeling better now.

The good news is there are still no leukemia cells showing up in Steve's "storebought" blood. Bless the donor!

Here is a photo of Steve last Thursday at the clinic as Maria drew blood. Wearing a hat for warmth inside and sun protection outside. He is still quite bald, but a few moustache hairs are coming in. Still waiting for eyebrows and that mop of hair he normally has.

Great News

noreply@blogger.com (Steve) — Wed, 18 Jun 2008 23:36:00 +0000

Got the results back from my latest bone marrow biopsy and it reported 100% donor cells and NO sign of cancer cells. Needless to say that was some very welcome news. The doctor's are still amazed that I went from nearly dead to good enough to go home in a weeks time. I still have something going on with my mouth and throat which doesn't seem to be clearing up and is starting to affect my eating. Otherwise I've put a little weight on eating real food again but I'm only 170 pounds so far with terrible muscle atrophy.

Sorry I haven't been keeping up with the blog. The last chemo made my vision fuzzy and it's hard to read. This happened before and it cleared up in a few weeks along with hand tremors. I hope it clears up soon.