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

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Sunday, December 14, 2008

Seasons Past

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!


Saturday, October 4, 2008

The Way Things Were

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.

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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.