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

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Monday, April 28, 2008

Home Sweet Home, briefly

Steve was finally able to leave the hospital late last Thursday. I picked up Lisa and we went to transplant class, then went downstairs to pick up Steve. Of course they weren't prepared to let him go once again, so we waited some more.

He is staying in Fort Worth with me until Friday when he checks back into the hospital. Although we are traipsing back to the hospital in Dallas every single day for meds and transfusions. Saturday May 3 they start the last round of chemo, three different drugs. That is the day the countdown to the transplant starts. Transplant Day is May 9.

Although Steve feels pretty bad (that lovely sense of humor gone momentarily), in a meeting with the doctor the other day, he said that one good thing which sort of surprises the team is that Steve's organs are in reasonably good shape after all the chemotherapy he has had. The heart, which was weakened by the first round, seems to have repaired itself and is functioning well enough for the moment. The kidneys are functioning well again, and although they are watching the liver, the counts seem to have improved when they switched some drugs around.

I just wanted to let everyone who wanted to visit Steve know that he will be back in the hospital, the Collins Building at Baylor, on Friday May 2.

Still wanting to put a pound or two back on him in preparation for this next adventure. Just need to find some foods that don't make him barf.

Wednesday, April 23, 2008

All Packed up With Nowhere to Go

At the moment, I'm sitting at the hospital with Steve, who is of course lying in his less than comfortable hospital bed. They were supposed to release Steve today for a few days of home care, with a real bed and possibly a sit in the garden to listen to the birds. I came early to pack him up and take him home, which he has been wanting do do for quite a while. I did a sweep of the room and began shoving into bags the flotsom and jetsom of accumulated trivia. It is amazing that when you enter with one small case, then wait a month, a little of this and a little of that brought to the hospital a bit at a time adds up to a lot of stuff.

The nurse came in to say that they didn't like Steve's liver numbers again and wanted to do another sonogram around 4PM. Well OK, so we are ready but will wait a bit. Then at 3:30 they said the doctor wanted to do a lung function test, which they couldn't do until tomorrow. And they won't let him leave the hospital without it. So here we sit.

The transplant team wants the caregivers, Lisa and I, to take a short but intense course on the transplant process and caregiving necessities. Tomorrow seems like the day, so perhaps we can combine it with taking Steve home if all goes well. Surely hope so.

Steve's color looks better, although hie is still quite nauseated. I will have to insist on his walking a bit before I leave today. We have a short few days, about a week, to try to rehabilitate him a tad before coming back in on May 2.

The transplant coordinator gave us a calendar today, sort of a countdown. So May 2 they will prep him to start the next chemo round on May 3, then when they are finished with that, the transplant (stem cell transfusion) will happen on May 9. And they said that they can't let anything stop this or they lose all the dates. The donor will be started on growth hormones five days before the draw, shortly after Steve starts his next chemo round. Evidently unrelated donor transplants take precedence before all others...autologous and related...since once the countdown starts, it can't be changed.

We are all ready for this next phase to begin.

Wednesday, April 16, 2008

Still Hanging in There

This has been a particularly rough round of chemo for Steve. They seem to have avoided so far some of the more dangerous side effects he had before (heart and kidneys) but the sheer misery of the intestinal upsets has kept him bedbound. In the last couple of days, those effects have subsided somewhat, although he is still quite nauseated. They give him meds for that, but it certainly doesn't do much for the appetite. They suspect he has a low grade staph infection, although it is not showing up in the tests, so are keeping him on intravenous antibiotics up to and through the transplant. This is where the art of the science of oncology comes in.

When Steve had several fevers this past week, they did remove his central line and gave him a PICC line again. The central line had been in since January which is a very long time.

Steve's main doctor is back and came in to see him today. He was not thrilled with the results of last week's bone marrow biopsy. The leukemia blast cells are still present, not significantly lowered by this last round of chemo. But he assured Steven that the transplant is still on schedule for May 9. They will start the next round of pre transplant chemos and preparations on May 3. Evidently one of the ways they handle the transplant treatment when the leukemia is so persistant is to give less immuno suppressants so that the new system (which is not a perfect match) will fight Steve's system and hopefully attack the blast cells more than the rest of him. Again, the art of the science. He will have nice fresh white cells that have been unaffected by chemo rounds.

The donor is on board. The draw dates are reserved on May 8 and 9. They allow two days for the draw just in case there is a problem getting enough stem cells the first day, although sometimes they can get enough in one day. Then they must do the transfusion within 24 hours, so that is set for May 9. There is a back up donor just in case they run into problems, but since they don't work him up in the meanwhile, that would take at least another 3-4 weeks. We sincerely hope he will not be needed.

Steve is very weak right now. He hasn't left the room, or even the bed (with the exception of extremely frequent bathroom runs) since the start of this last chemo round some weeks ago. Here's hoping that in the next few days he will be able to get up and walk a little and work on building back up for the main event. Although they would really like to keep him there in the hospital, if we insisted, they might let him leave for a few days, but he would have to go back to the transplant center every single day for tests and transfusions and I don't know if he has the energy for that right now. To be discussed and evaluated. Wish we lived closer to the hospital.

So we all need to work on boosting his spirits and putting him in a fighting mood! Again, thanks to everyone for their help and support. And thank you to his donor out there, whoever you are. Our thoughts are with you, too.

Wednesday, April 9, 2008

New Pink Room Info

Steve was moved into another room this week, also pink. Slight improvement because of the window placement. No view, but a bit more light. Bathroom even smaller and the closet is half the size of the last one (which was miniscule) plus he has no shelf now, so he is very, very limited on what personal effects he can have. He is sending things home. He's basically down to a few DVDs, one photo and five books, all stacked one on top of the other on the VCR player, some underwear and three shirts for the day he feels he can give up the hospital gown.

All the intestinal upsets still there. Steve is pretty miserable from that. Eating very little because of the difficulty keeping food down. They say this can't get better until his counts come up, so very much hoping that comes soon.

The infection he developed last week seems to be under control. I don't think he has had fevers the last couple of days. He was taken out of his room and off the floor today for the first time since going back into the hospital. He went for a CT scan to see if there are any tumors that might have developed. Those results should come in tomorrow. Steve's general weakness and the pain medications are causing some confusion in his reports to us, so Lisa and I are looking forward to speaking with the doctor in the next day or two. We are wondering if the target date of April 21 for his counts to return will hold. We are also hoping we can get him out of the hospital for a week before the next round of chemo.

It is now four and a half months since we first found out what was so wrong with Steve. Hard to believe. All but two and a half weeks of that were spent in the hospital. Think I would be stark raving mad in his shoes.

Friday, April 4, 2008

Another Week has Passed

Steve has gotten through another week. Not a happy camper because of serious digestive and intestinal upsets, but it seems that might be a bit better, or at least they found pain medication which helps. Last night he developed a fever. They immediately put him on an infection protocol. Let's hope they got ahead of the problem.

Thank you to everyone who attended the "Spaghetti Dinner" for Steve and to all of you who registered to be marrow donors. It is so important and you are all heros. Your support means so much to Steve's family.