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

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Saturday, March 29, 2008

New Game Plan

Dr. Agura laid out a projected new game plan today for Steven.

Through April 21 - In hospital through this date to recover from this round of chemo.
May 3 - Return to hospital to have a final round of chemo to prepare for transplant. He will receive Fludarabine, Busulfan and ATG. No radiation is planned at this time.
May 8/9 - Bone Marrow Transplant

If all goes as planned, it looks like he will have a ten day break at home.

As miserable as Steve is at the moment, the staff says he is right where they would expect he should be at this stage of this chemo. The nurses cheerfully told us about all the people on the floor who were worse off, with the gory details. The night tech for the week-end is a good ole gal from Odessa, so funny she actually made Steve laugh tonight. Hope she comes back every night. It was good to hear.


Wednesday, March 26, 2008

News from the Pepto Bismal Pink Room

Steve is nearing the end of this series of chemo. The first one has affected him quite differently than the previous ones, upsetting his digestive system badly. The only thing he wants to eat is bread but they do keep trying to tempt him with hospital cuisine (an oxymoron if ever I heard one). The chemo they are giving him now is the one that is very hard on the bladder. They are doing all sorts of preventative things to try to avoid the worst of it. He's pretty miserable for the moment. We are hoping that these two chemos have all their bad effects up front and not delayed as the other ones did.

His new room is sort of gloomy. We hope another room will come vacant if he has to be there a long time. Here's hoping too that they will protect him more from hospital infections on this isolated floor.

Steve hasn't had the wherewithal to take out his computer in days, and for those of you who know him well, that's something. I hope he will be back to blogging soon.

News on the donor front; the selected donor has scheduled his comprehensive physical for next Monday. The other one-off draws came in last week, but testing isn't final on them. So we don't know yet if there is an equally good donor to serve as back-up. And there is always hope that a better donor will show up at any time. There are roughly 1000 new donor volunteers who sign up each day. Perhaps one of them will match up.

Since Steve had to undergo this additional round of chemo, they have put the donor situation on hold. Not that they aren't actively preparing, but they don't know what the best date will be for him. He has to get through this round, get his numbers back up, and strengthen himself as much as possible for the transplant round, with more chemos and possibly bone radiation. So the timing depends on Steve's situation at the moment.

Please do whatever you can think of to cheer him up. Cards, calls, e-mails. Every bit of encouragement helps to boost his fighting spirit. His normal good nature is evident, although his sense of humor is strained for the moment. I'm sure it will be back once he feels better. Everyone at the hospital tells us what a really nice guy he is. We all know that.

Many thanks to everyone who has given blood or is involved in the several blood drives in Steve's benefit. There is a bone marrow donor drive at Travis Avenue Baptist Church on Sunday, April 6 in the Welcome Center from 8AM to 1PM. If you are interested in volunteering you would be welcome there. There is a reduced charge of $25 for the donor kit since it is a group drive.

Although Steve knows it is probably not going to turn up a perfect donor for him, he wants to do everything he can to widen the donor base to help others. He has been made all too aware of what it means to have difficulty finding a donor match.

The spaghetti dinner benefit at Steve's church is March 29. The invitation with address and phone number is on the home page of Steve's website, which you can access from the button at the top of this page. Hope to see many of you there.

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Saturday, March 22, 2008

Back to Hospital

Yesterday, just before going to Dallas for a doctor's appointment, the doctor called to say Steve should come prepared to go back into the hospital. The lab reports on the last bone marrow biopsy showed the leukemia was returning very aggresively and the doctor felt Steve couldn't wait until the transplant mid April without further treatment or the leukemia would be out of control.

Needless to say, Steve wasn't terribly excited to be going back in but didn't really have a choice. They finally found him a room last night in the Transplant Hospital in the Collins Building (much confusion on that score) and he checked in.

They immediately gave him several units of blood and started the new chemotherapy this morning at 8AM. Eleven litres over 36 hours of the first drug (that sounds like a lot of fluid), then they will switch to another one. The first one can cause a blood pressure drop, so they will monitor him closely. The second is very hard on the bladder, so they will flush him with fluids during that. Sounds like he will be running for the bathroom quite frequently day and night which doesn't allow for much rest. They haven't used either of these drugs on Steven yet. Since the leukemia builds up resistance to the chemo drugs, they keep switching them around. They need to have the leukemia cells as close to zero as possible before the transplant.

The Transplant Hospital is the only floor of patient beds in the Collins Building (4th floor) and is just under the floor of the doctors' offices, so the doctors can access it quickly. It is an older facility than where he has been in the Roberts Building. Room is smaller, tiny window with no view (unless you could count a gravel roof a view). Decor is a battered Pepto Bismal pink with still another floral border (Steve has had it with floral borders, in fact we think the decorators who design these rooms should be sued for annoyingly bad taste). But the nurse to patient ratio is 1/2 and everyone has been very kind and helpful. There is a well-stocked patient kitchen where Steve will not be allowed to go since because of the MRSA and VRE infections he has gotten in the hospitals, he is treated as a pariah, or isolation patient. He can't avail himself of the facilities offered since they are concerned he could spread these infections. Which means he is pretty much confined to his room except for perhaps walking in the halls with a mask.

Steve may have visitors. The number is limited because of the size of the room. And they ask that if anyone has been sick in any way, they wait several days after they are recovered before coming. Steve is still neutropenic, actually his system has never recovered since the very first chemo, so high precautions are in order. Because of his extremely low platelets, they took away his razor and his fingernail clippers, and were quite horrified to hear he had been using them all along. So he may have a full beard when you see him, at least until we can get an electric shaver in to him, and a nail file is in order.

Steve tried to take full advantage of his last few hours of liberty, walking around in the hospital complex and breathing a bit of fresh air. His almost three weeks of freedom after so many months in the hospital were all too brief.

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Wednesday, March 19, 2008

Donor News

A little bit of good news for a change. Steve got a call a few days ago from the donor search coordinator. He has TWO acceptable matches, unfortunately not perfect, but possible. Both are better than the one who backed out. The one from Europe is a woman, and is off on the C. The US donor, that we knew was off on the A to begin with, lined up on everything else and is a man, i.e. more stem cells. He is number one choice right now. He came in quickly when they requested a draw, which is nice. It took the European donor almost six weeks to schedule the draw. The identity and location of the donors are kept very secret, but I hope that one day we will be able to express our boundless gratitude in person.

After the first round of possible donors didn't turn up anything, the transplant center began requesting draws from donors that were already known to be one antigen off in hopes that the unknown factors would line up after that. They are supposed to have five more "one off" draws coming in this week for further testing, but needless to say we are much encouraged after weeks and weeks with nothing when we started off with nine possibles. Now, all the potential donors still have to pass extensive physicals, but at least there are more than one. I don't think we can find a better match, but will hopefully have some back-ups in case of problems as we had with the last ones.

Now we just have to build Steven up as much as possible, mentally and physically, until he goes in for the next round. He is getting platelets every other day now, and needing whole blood once or twice a week. He's dizzy and lies down most of the time, plenty of problems but no fever and not sick. Wish we could keep him in a bubble. The doctors are adjusting his multiple blood pressure meds to try to deal with the dizziness, but so far it hasn't worked. Driving him to the hospital on Sunday, I looked over at him and saw blood all over his teeth, very Nosferatu or Draculesque if you will. His gums were bleeding and he didn't have enough platelets to stop it.

Because of the time necessary to schedule the donor, they don't think the transplant can happen before mid-April at the earliest. Steve will go back in hospital a week to ten days beforehand to irradicate his system with chemo and radiation to await the transplant. Because of the mismatch in the bone marrow donor, Steven will have to be on immuno suppressants for a longer time, my understanding is six months to over a year. Which will make him very tired and susceptible to everything. He will have to really live in a bubble then. But they are necessary to try to deal with rejection problems. Unlike an organ transplant, where if the match is off only the organ dies, since they are replacing Steven's basic system, they need to keep the new system from rejecting him.

Steve will have a new blood type and new DNA, at least for blood tests. All the immunities he has built up over the years will be wiped out and he will have to take childhood vaccinations all over again.

Yesterday, they did another bone marrow biopsy to see the status of the blast cells. They should tell us the results tomorrow while tanking Steve up with the necessary blood products.

Please send jokes, make Steve laugh.

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Thursday, March 13, 2008

Fidelity Carter Blood Drive

I heard that Fidelity is also sponsoring a bone marrow tissue drive. Please take part you can save someone's life. It looks like I may have a good candidate which is great so I won't have to keep going through rounds of chemo.

Wednesday, March 12, 2008

Benefit Evening for Steven

Monday, March 10, 2008

Onward and onward

Steve has been just too exhausted to post since last week. So I will again try to fill in a blank or two. His blood counts are just not coming up, so every other day he has platelets and frequently blood. Friday it was two units of blood and a unit of platelets. Monday he got just platelets and fluids. I can't even tote up how many bags of blood and platelets he has been through since the start of all this in November. Thank you to every single person out there who donates blood from the goodness of their hearts.

His blood pressure has been quite low. We wonder if it could be the result of two doses per day of blood pressure medicine they gave him since his pressure was frequently elevated in the hospital. Have to call the heart doctor tomorrow and see what he thinks. That might be part of the reason for the extreme fatigue. Plus the last chemo he had the day he left the hospital. Other than that, no fevers thank goodness. Blood oxygen is good. No recurrence of the diverticulitis. He hasn't gotten his platelets high enough to allow the colonoscopy the doctors want to do to check out his intestines before starting the transplant.

The doctors want to make a decision this week on what route to take on the marrow donor situation. They have made Steve a priority with the cord banks. Since last posting, they found two more "cords" that are a bit further off from a perfect match, but are larger cords. If time were only on his side, cord blood might find a perfect match before adults would show up and register. There is the one international donor that we should know something about this week. And they requested draws on some donors that were already one antigen off on the initial testing in hopes that the further testing might line up with Steven's tissue type. Two of these samples were supposed to come in the end of last week. Full results take up to ten days, but they usually know sooner if they aren't going to match. We are waiting on needles and pins.

I wouldn't say Steve has much of an appetite, but he has managed to gain about 6 pounds since he left the hospital. The chemo destroyed most of his taste buds and they are slow to come back. About the highest compliment he has for food is "neutral". Meat tastes bad, and it is protein that he needs most for rebuilding his system. There are powdered protein supplements to stir into things and protein drinks that he is taking religiously. Eggs are tolerable. Water which was OK before now tastes metallic. The one thing that tastes good is ice cream, Ben & Jerry's and Haagen Dasz. He has been trying to push himself a little more each day to gain back some muscle, but the fatigue isn't helping accomplish that.

Steve managed a couple of hours at his house on Saturday to see the kids. Thank goodness everyone is well now, cross your fingers. It was Alexa, all 5'6" who sat in his lap most of the time. Andrew has a birthday coming up tomorrow. Steve wants to go see him if possible.

I have been working to arrange Steve's Social Security Disability benefits. He certainly qualifies and has paid in all his life. But the SS Admin doesn't make it easy. Endless paperwork, then waiting for calls from them that never come through. It has been over two weeks since the local office was supposed to call within two days and we haven't heard a word. I keep calling the main office, where they have been very helpful, but it is the local office that administers it. It won't be enough, but at least it will be something. In exasperation, tomorrow I plan to gather up the pounds and pounds of paperwork they require and march in to the local office where I'm told you wait four hours and stand there until they give me an answer. Once accepted, it still takes four months to start receiving benefits. It's not easy to be sick.

Thursday, March 6, 2008

Home Sweet Home, sort of

Thought you might like to see a photo of Steve at the hospital with his Siamese Twin, connected at the neck!

After over three months in the hospital, last Saturday Steve's doctors surprised him (and us) by allowing him some time out of the hospital for a sanity break while waiting for a donor. It was quite a scramble to get ready for him on spur of the minute notice, but the troops were called in and we managed. Because Lisa and the children were sick, Steve went home to his mother's. Everything he might come in contact with had to be cleaned with antiseptics. Lots of restrictions on foods. Nothing from buffets, sliced meat and cheese from packages rather than the good stuff from the deli, juices bottled not fresh.

Basically, Steve's blood counts were starting to come back after the last round of chemo. Since no marrow donor is ready, the doctor decided he needed a break to build up his strength before whatever the next round of treatment brings. They put him on another "biologic" chemo which targets specific cells to try to keep the leukemia in check until they can hit him again hard pre-transplant. Evidently the leukemia becomes resistant to the chemo after multiple rounds so they want to save the big guns for when they need them most.
Steve has to report back to the Transplant Center every other day for blood checks and transfusions. His first visit back showed his platelets were extremely low, so they tanked him up a bit. Yesterday's visit showed they were a bit better although still low and since no matched platelets were available, they decided to wait until Friday for more platelets and probably whole blood, too. Depending on his Friday counts, they will decide if he needs to come back Sunday or can actually have the week-end "off". It is a day by day process.
His task right now is to recuperate as much as possible and gain strength for the next round. He needs to force down food even though it does not taste pleasant and push himself a bit more each day to gain back muscle tone. He was very, very tired and weak when he first arrived. Now he has put on a couple of pounds and has a bit more endurance each day. He wears a mask when he goes out in public, exciting places like the hospital and the pharmacy. We stopped by his home on the way back to Fort Worth from the hospital, surprising his daughter with a brief masked visit. The look of surprise and then joy on her face before she threw herself into his arms was good medicine for Steve.

Now to the serious stuff, the donor which the doctors had chosen (a mismatch on the C) was notified. After having given the initial blood draw, for some reason they decided to be unavailable until 2011. This was a tough blow. I wonder if this person did not realize before going in for that first blood sample that they didn't want to give now? It is hard to fathom a refusal to donate after being notified. There is one remaining international "possible" who sent in the first blood draw this week. We are waiting to hear the results of further tests on that one. In reserve, there is that one unit of cord blood which is a single factor mismatch. The problem of the smaller volumne would result in a much longer period to rebuild Steve's immune system, requiring regular blood and platelet transfusions over the recuperation period. Not perfect, but possible.
There is always a chance that a new donor will show up in the marrow data bases. We are trying to encourage everyone to sign up to be a marrow donor NOW. Time is not on our side. To organize marrow donor drives through work, church and schools. Information is on the website.
And finally, a huge and heartfelt thank you to everyone who has helped Steve and his family during this difficult time. Donations to help with the mounting bills, grocery cards, prepared meals, website building, visits, blood donations and moving furniture and help at the house for Lisa. It all means so much and Steve is touched by how many people care and want to help. His spirits are good.