Trials and tribulations of a patient in search of a bone marrow transplant

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Friday, September 19, 2008

Very Sad News

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

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.

Thursday, September 18, 2008

Things as They Are

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.

Tuesday, September 16, 2008

At Loose Ends

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.

Friday, September 12, 2008

They've Pulled the Rug Out from Under Us

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.

Thursday, September 11, 2008

The Ordeal Continues - Day 13

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.

Wednesday, September 10, 2008

The Ordeal Continues - Day 12

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.

Tuesday, September 9, 2008

The Ordeal Continues - Day 11

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.

Monday, September 8, 2008

The Ordeal Continues - Day 10

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.

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Sunday, September 7, 2008

The Ordeal Continues - Day 9

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.

Friday, September 5, 2008

The Ordeal Continues - Day 8

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

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.

Wednesday, September 3, 2008

The Ordeal Continues, Day 6

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.

Tuesday, September 2, 2008

The Ordeal Continues, Day 5

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.


Monday, September 1, 2008

The Ordeal Continues

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.