With Chris' brother and family, New Mexico June 2010

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Mon 12-19-2011 - Chris has had low blood counts for quite a while now. It is a condition called Myelodysplasia and is a result of all the cancer fighting treatments. Though he's been feeling good, the blood counts have recently taken an even further nose-dive. His white count is now at the level it was at the lowest point during his bone marrow transplant. He has an ANC of 0. He's been happy to live with it, avoiding large groups of people and constant hand washing, but his doctor tells us he won't be able to live this way for long. Myelodysplasia developes into Leukemia. And it can happen at any time. The only way to keep that from happening is to undergo another bone marrow transplant. You may remember that we were told back in 2008 that another transplant would likely kill him. Well, his doctors feel it is now safe for him to do because there is no sign of the lymphoma. This will be an Allogeneic transplant (that is one with a donor). It has not been scheduled. I will post here when we have an exact date and schedule.

Here is a really great interview with Richard Stone, MD from the Dana Farber Cancer Institute and Harvard Professor explaining MDS. click on "Watch the Interview"

Tues 2-14-2012 - Here we are again. It took Chris some time to make the decision to go ahead with the transplant. It has been a year of status quo for him making it hard for him to understand why he needed to go through this again when he's been feeling so good. After a night of discussion with his brother, he was finally convinced that it is necessary. So, today he goes through the "Staging" which consists of a number of tests; pulmonary, EKG, CT scans, etc. One test we have seen the results on is a recent PET scan. I'm happy to report. Still no sign of the Lymphoma. I think this is the 5th one that has come out clean!

Sun 2-26-2012 - The transplant is scheduled to take place on March 5th. Chris will be entering the hospital this coming Wednesday the 29th and start his pre-transplant treatments at that time. His donor has gone through all the same staging tests Chris has and will donating the same day Chris gets the transplant. I see I've failed to mention that Chris' donor is his sister Mary. Mary was a 10 out of 10 match. Though she doesn't live too far away, it is far enough to be an inconvenience. I'm sure we haven't told her just how grateful we truly are. This will not be a full blown Allo transplant. So, he will not need the amount of chemo required for one. The side-effects of what he will get (which is a combination of chemo and and full body radiation) should be minimal.

We expect Chris to be in the hospital for a total of about two weeks, though that will all depend on how fast his recovery progresses. Once home, he will have daily (twice daily to start) visits to the clinic for testing. The doctors will monitor the grafting and watch that the medication controls the graft-vs-host disease.

Wed 2-29-12 - Chris is all settled into his room at Presbyterian St.Lukes Hospital in Denver. We arrived early this morning at which time he was given platelets and a central line was placed. ("I have a hole in me again.") Then he was admitted and started on the first chemo treatment. The whole thing seems very surreal for us both. It is the same floor, same room as before. Only the nurses are different.

We were told that the side effects shouldn't be too hard on him. I call it chemo because, yes, it is a chemical. But it is not designed to kill off everything. It is an immunosuppressive drug called Fludarabine which is really designed to help keep the new stem cells from being fought off when introduced. Chances are he's going to still feel pretty good during this whole procedure which makes my job more difficult. It's hard to stop him from doing something he shouldn't. Anyway, don't feel like you are bothering him when you want to give him a call.

Mon 3-5-2012 - Well, today is the day. Chris receives two courses of full body radiation, one in the morning and another in the afternoon. Then the transfusion. His donor, Mary, will be donating today also. She has been receiving nupregin shots for the last several days to boost the white count. It should take several days before the donor cells start to graft.

Mon 3-5-2012 5:00PM - The new stem cells are now finding their way through Chris' system. The total body radiation really made him feel run down almost immediately. And the benedryl he was given before the transfusion allowed him to snooze through most of it. Every thing seemed to go as planned. Mary, his donor (and his sister), didn't quite fair as well. Besides a lot of commotion at her hotel during the night, she was also experiencing a considerable amount of lower back and hip pain. Hopefully, she was able to get home to a good night's sleep.

Tues 3-6-2012 - Chris felt much better today. He does experience periods of nausea, but he is still eating. His spirits are up, and he's even been playing his guitar! Quite a difference from yesterday.

Wed 3-7-2012 - It is all starting to catch up with Chris now. He's been battling nausea and is on constant medication to control it. So, eating is a challenge. Not the "sail through it" experience we'd thought it would be. Meanwhile, I've been working on doing the "spring cleaning" at home: making it as dust free and sanitary as possible. We don't know exactly when he will be able to come home just yet, but we need to be ready when he does.

Sat 3-10-2012 - Chris has been on a regular schedule with the anti-nausea medication. He isn't eating quite as well as he had been, but he still tries. The good news is he is scheduled to come home on Tuesday. There will be the usual precautions once he's home. Nothing he hasn't had to follow for the last couple years anyway; keeping out of large crowds, washing hands a lot, not eating at buffets, watching his sun exposure, etc. And we will be watching closely for Graft Vs Host Disease symptoms.

Mon 3-12-2012 - Chris is Home!!! His ANC has not bottomed out yet. It was at 30 today. So, even though he's home, there is a lot of recovery yet. All the same precautions apply. And we need to watch for symptoms of Graft Vs Host Disease. The medication list is long and he will be going into the clinic daily for fluids and blood tests. Once he makes it past the 100 day mark, we will rest easier. But it sure is good to have him home.

Thurs 3-15-2012 - It's all caught up with Chris now. He isn't feeling as chipper as he was while in the hospital. As a matter of fact, he's feeling pretty run down and he's been taking the anti-nausea meds quite often. Taking all the pills he needs each day (nine several times a day and others as needed) has become a real chore. And he has a long way to go before being weened off the medication. We've been making daily visits to the clinic for hydration and magnesium replacement. He needed one platelet transfusion on Tuesday and will get another tomorrow.

Sun 3-18-2012 - Because of a temperamental radiology tech, we spent all day yesterday at the hospital. And I mean all day!! Chris went in for his standard appointment for magnesium at 8:30am. He talked to the doctor about some pain in his chest, so the doctor ordered a stat CT scan. He finally got the 10 minute scan at 7:15pm. We finally got out of there at 8:30pm. The doctor called us later with the results. The things we were worried about with regard to his lungs have been ruled out. However, it appears that there is a lump near his pancreas. We are told it could be a number of things one of which could be the lymphoma returning. Another scan is scheduled for Monday. Chris has also developed an infection at the central line. He got antibiotics for it yesterday and will again this morning. We will also be discussing the CT results more thoroughly with the doctor today. Hope it is a shorter one.

Tues 3-20-2012 - We had a shorter time getting another CT scan this time. We haven't heard the result, but in discussing with the doctor, we understand that it very well could be scar tissue from a previous tumor. We are gathering past scan films for the radiologist to compare. We hope to avoid a biopsy. The really good news is that Chris' blood counts appear to be on the up swing. His white count and, more noticeably, platelet count have been steadily rising.

Wed 3-21-2012 - Chris' blood counts are on the rise. Some are slowly creeping up, but his platelets are moving a little faster. He has a platelet count in the 90's. Still not normal, but higher than they have been in a couple years! For the most part he's feeling pretty good. The nausea doesn't seem to be as much of a problem and his energy is beginning to return. He's better in the morning and seems to crash in the afternoon. But that is understandable. We waste a lot of his energy sitting in the clinic while he gets his daily infusion of magnesium and an antibiotic. I don't know how much longer it will be a daily thing. Also, the results of the second CT scan seem to indicate what we thought, that it is scar tissue from a dead tumor that they were seeing.

Mon 3-26-2012 - There is good news and bad news today. The good news is that Chris seems to be grafting nicely. He is no longer neutropenic and his platelets are almost within the normal range.
The bad news is that he is showing symptoms of Graft Vs Host Disease. He will undergo a colonoscopy in the next couple days to determine if it is GVHD or an infection of some kind.

Thurs 3-29-2012 - It has been a rough go for Chris the last couple days. He's been battling diarrhea for over a week. Then to go through the prep for the colonoscopy... He became extremely dehydrated Tuesday night. After a couple bags of fluids, he felt a little better today. Still not even close to normal, just better. The colonoscopy itself went well. No polyps or anything unusual. Tissue samples were taken to analyze for GVHD. We should have the results tomorrow.

Fri 3-30-2012 We got the results of the colonoscopy today. There appears to be no Graft Vs Host. Good news, but it still doesn't really explain why Chris has been feeling so poorly. Well, Chris has suspected it is drug related. The nurse practitioner, after consulting with one of the doctors, seems to agree. Some adjustments may be made to his drugs based on blood testing in the next few days. He continues to have daily hydration and magnesium replacement in clinic.

Mon 4-2-2012 - Well, Chris has contracted a bad cold. He does have a decent (not completely normal) white count, so his body should put up a good fight. Still, on top of everything else, he's really miserable. He still goes every day for fluids which is not just tiring for him. It's been tiring for me also. His appetite has not been great either, which doesn't help. Nothing has changed with his medications. He still has to take all those pills every day.

Tues 4-3-2012 - The bad cold that started yesterday afternoon got worse. By this afternoon Chris had a fever of 101.1. During his regular clinic visit he was started on an IV antibiotic and then was admitted to the hospital to both continue antibiotic treatments and for observation. He tried to talk everyone into just letting him go home, but he just doesn't realize how fast bad can move on to really bad in a short amount of time when your immune system is suppressed. Having him cared for in the hospital takes a lot of worry from me. I'm sure he will feel better tomorrow.

Wed 4-4-2012 - Chris is still in the hospital. A CT scan shows pneumonia. They are awaiting results from blood cultures. So, there may be more. He's still receiving antibiotics, and he seems a lot better that he has been for a couple weeks. He will most likely be in the hospital for another day or two.

Sat 4-7-2012 - It looks like Chris will be released from the hospital on Monday. He's been feeling better and his appetite is back. He still has a bad cough that they are treating with an inhaler (which gives him the shakes). And he's got his "Lou Rawls" on. But he feels pretty good. All the tests came back negative. They only tested for the most common viruses. He had something that spurred this on, it just isn't known what. Anyway, the hard lesson here is that even though his counts are up (his white count was close to normal yesterday), we still need to be careful.

Mon 4-9-2012 - Chris is back home now. He's still not feeling very good though.

Sat 4-14-2012 - Chris is slowly starting to feel better. He still has a lingering cough that keeps him up at night. But he is trying to be more active. His appetite comes and goes. It hasn't been too bad the last few days. We continue to go into the clinic for magnesium every day. Something that is becoming very tiring for both of us.

Wed 4-18-2012 - It is very up and down with Chris. After feeling pretty good the last couple days, he woke this morning with a fever and chills. A CT scan revealed he has a substantial amount of pneumonia in one of his lungs. It seems it didn't get licked the first time. Because he doesn't want to be in the hospital again, and we are at the clinic every day anyway, they are going to try treat him outpatient. He was started on IV antibiotics today. He still has a fever. If it gets any higher we'll be taking a trip to the emergency room tonight.

Thurs 4-19-2012 - No trips to the emergency room. The antibiotics kicked in and he's feeling much better. It is one of those day by day things. And when something goes wrong, we have to be on top of it immediately.

Wed 4-25-2012 - Chris has been feeling down right lousy the last few days. Not only has he had to fight pneumonia, but a virus has surfaced. The virus is CMV and is one of those viruses that lies dormant, and appears when the body is going through something traumatic. Transplant patients are considered at a high risk for CMV. Except for our daily clinic visits, he spends most of the day in bed with the phone off. You know he's not doing well, when he turns his phone off. Our clinic visits are longer because of the added IV medications. But this keeps him out of the hospital.

Fri 4-28-2012 - There are little improvements in how Chris feels, but he still feels pretty awful. He's also lost a good amount of weight in the last week. Most of all, he's pretty "sick" of it all. The bright spot is that the transplant is working. His last bone marrow biopsy showed that the donor t-cells have fully populated, and there are no signs of his original t-cells or the chromosome abnormality. His counts have been very good. Not normal yet, but higher than they have been in years. After hearing the news, he told the doctor, "Now I just have to live through it". We are half way through the critical period and will be going in for fluids and IV meds for some time.

Fri 5-4-2012 - Chris has been doing better the last few days. His appetite is increasing, and he has had energy enough to fix one lawn mower (so I could finally get part of the yard mowed) and work on another. Of course, we have been here before and never know what's around the corner. But it does keep his spirits up when he's able to accomplish something.

Fri 5-11-2012 - The roller coaster ride continues. Chris will feel pretty good for a couple days then wake up one morning feeling just awful. He has been pushing himself to get up and do something on those days anyway. And, of course, we still visit the clinic daily. He's on mostly oral medications now, and only gets the magnesium and additional fluids via IV. His appetite is just ok right now. At least he is eating. He has a long way to go to gain the weight back.

Wed 5-16-2012 - Today is day 72 from transplant. We are still riding the roller coaster, but as I write this things seem to be more up than down. Chris has had more good days than bad, though we never quite know from day to day. His appetite is getting better. He's not ready for a dinner out yet, but there are improvements. We still do the daily clinic thing. Which is really a drag. It sounds like that may go on for a while yet. He has had his white blood cell count drop enough for a nupregen shot yesterday. This is be due to a medication he was started on recently. We can't seem to reduce the amount of pills he has to take everyday. They have reduced the dosages of some, but have added others.

Thurs 5-24-2012 Really not much to report. This is Day 81 and there isn't too much that has changed. It looks like Chris has stopped dropping weight. He is eating again. And he's starting to pay attention to how much he's drinking. The doctors and N.P.'s have been playing with his medications. Some have been scheduled reductions, others have been keep his white count from dropping too low for too long. He's had to have more nupregen in the last couple day. We still go to the clinic every day for his magnesium replacement. They gave him one day off last weekend, though. He seemed to do well enough that we thought we'd try taking this Monday off also.

Fri 6-8-2012 - Things are getting a little better for Chris. His white count is back up again. He definitely has an appetite these days. And his energy level is improving. Still do the daily IV magnesium at the clinic (hospital on the weekends). Sounds like that will continue as long as he's on most of the medication. They had to lower the amount of fluid they were giving him every day because his feet started to swell up pretty badly. Probably a sign that he isn't getting as dehydrated as he was. He has another bone marrow biopsy scheduled next week to see how the grapht is progressing.

Sat 6-30-2012 - I can't believe it has been so long since I posted an update. Not much has changed since the last one, actually. We are well past the critical 100 day mark. Chris continues to get the daily IV magnesium at the clinic, though they are starting to give him a day off here and there. We continue to watch for flair ups of the CMV. He's back on the meds for that which is great except that it severly lowers his white cell count. So, the risk of him catching something is higher than usual. He gets nupregen shots as needed to increase the white cells. We got the results from the latest bone marrow biopsy and they are as expected. 100% grapht of the donor cells and the damaged chromosone is now normal. His energy is good and he's eating great. Still has a long way to go to gain back the weight he lost during that first CMV episode. But he hasn't lost any more.

Sun 8-19-2012 - For the most part, Chris had been feeling pretty good these past few weeks. This week The Graft Vs Host finally showed up making him feel pretty lousy. He's been put on a steroid to keep it under control. And in keeping with his "testing out" of other forms of cancer. He had a patch of Squamous cell removed friday. He's down to clinic visits 3 times a week. If the GVH gets under control, they may reduce it to 2 days.

Wed 10-09-2012 - A lot has been happening with Chris this passed month. He has been treated for Graft Vs Host with steroids along with all the other medications he's been on. There have been side effects that are being treated with more medications. I've actually lost count as to how many different meds we takes on a daily basis. The list seems to grow every week. He is now on meds to control high blood pressure, he has to watch his blood sugar and takes insulin along with antibiotics, anti-virals, anti-fungals .... His legs are weak and he has on and off boughts with water retention which blows his limbs up quite impressively. His feet turn into Hippo feet most of the time. The steriod makes him overly excited and a little agitated. We are both making the best of it all. But the journey continues.

Wed 10-17-2012 Chris is scheduled for a stay in the hospital. As far as we understand it at this time, a couple spots were seen in his lungs during a CT scan he had on Monday. Some type of infection is suspected and a biopsy will take place tomorrow. He will be in the hospital through the weekend as we wait for the results of the biopsy. He will also be going through some tests to get to the bottom of his bloating episodes. These last few weeks have been the worst it has been. The doctors are motivated to find the cause.

Thurs 10-18-2012Chris had a lung biopsy, CT Scan and ultrasound of his limbs today. There were no clots or blockages. The worse fear was that the lymphoma had returned and was causing a blockage. Thankfully, this was not found, though a PET scan will take place after he's out of the hospital. The focus right now is his kidneys. He is loosing protein which is related to kidney function. More tests are scheduled. They are determined to pin point an exact cause. Meanwhile, his swelling came way down overnight, and we should have the results of the biopsy within the next couple days.

Fri 10-19-2012Some good news today. Urine testing showed no protein which means Chris' kidneys are functioning normally and they are not the cause of his fluid retention (edema).

Mon 10-22-2012Chris had a liver biopsy today. Nothing much to report other than that. His swelling hasn't gone down any. And they still don't have a definite infection diagnosis other than knowing it is fungal.

Tues 10-23-2012To do the liver biopsy they went down a vein to get to the liver. The incision sight was causing a great deal of pain for Chris last night. He also has been experiencing discomfort on the right side of his abdomen. Because of the pain, he got very little sleep last night and was very lethargic today. He started to perk up late in the afternoon, but still was very tired. We should have the biopsy results tomorrow. The sample from his lungs don't seem to want to grow. The speculation is that the dose of Vfend he takes to combat fungal infections has just not been high enough. There may be more theories as to why the level of Vfend is low when the results of the liver biopsy come in.

Wed 10-24-2012 There was quite a bit of activity today. Chris was more than just tired yesterday. Here's what we know. He blacked-out when he got up to use the restroom last night. He has a good sized cut on his upper lip. Luckily, he had a male nurse that night that was in the room at the time. Chris called me to let me know what had happened. Because of his manner, I insisted on talking to his nurse who informed me that they were turning on the bed alarm. It made for an only slightly easier night.

So, it seems that he may be hemorrhaging from the biopsy sight on the liver. He had a pretty intensive ultrasound (done at the bedside), and he is getting platelets and red cell transfusions this afternoon. He's on what he's calling "lock down" after almost passing out while getting up to take a walk today. I was standing in front of him when his expression went blank, he turned pale and started to shake. Both the nurse and her assistant were in the room and it took all three of us to get him to lie back down. Before I knew it , every nurse on the floor and two doctors were in the room. He came to his senses pretty fast commenting on how nice it was to be surrounded by pretty nurses. He's been very good about following procedure. He's even letting the physical therapist lead him in some exercises. He had a good dinner and was half asleep when I left. Hopefully, he'll get a good nights sleep.

Thurs. 10-25-2012 A follow-up CT scan of Chris' lungs have shown that the infection has "exploded". Surgery is scheduled for tomorrow afternoon to remove part of a lung and remove some infected spots. He has just today had a hard time breathing. This is not routine surgery, but we are staying optimistic that all will go well. He's at Presbytarian St. Luke's (that's where he had his bone marrow transplant) on the fourth floor. If they move him, which they've talked about before, I will let you know.

Sat 10-27-2012 The surgery was a success. He was in surgery for about 3 and 1/2 hours and recovery for another couple before being moved to ICU. The lower lob of his left lung was removed as were a couple infected spots in that same lung. The infection is being cultured now, though he's been placed on some serious antibiotic/antifungal medications until they are able to pin point the exact strain. Chris was in a great amount of pain last night. And managing it has been the primary concern. His appetite, though, has been excellent. He couldn't wait to start eating and was extremely disappointed that he had missed ordering dinner. Apple sauce and ice cream had to suffice. He should be in ICU the rest of the day, but it could be longer based on his condition. He's alert and wants to heal as soon as possible.

Sun 10-28-2012Well, here's the latest. Chris was moved to the Bone Marrow Transplant (BMT) unit yesterday afternoon. He is still in a lot of pain mostly from a large drainage tubes in his side. When they are removed, the pain should subside. Removal depends on drainage levels. When It is next to nothing they will be removed, so there is no definite time frame. He remains pretty drugged up for now. The good news is that the results of the culture came back. It is a mold as the infectious disease doctor suspected. But now we know the actual strain. It is a Rhizopus. We will no doubt learn more about it tomorrow. But the antifugal he was put on after the surgery is what they'd use on him for this strain. This is a huge relief to know they are fighting it correctly. He will likely spend a couple days in BMT and then be moved back to the room he originally checked into. His doctors are happy with his progress so far.

Tues 10-30-2012 Things are not moving very much for Chris. And he's been extremely tired today. It turns out there is also a bacterial infection in his lungs. Norcardia is the bacteria that according to Dr. Bearman acts like a fungus. Like the fungal Mucor, it is found in organic matter in soil. He is being treated for the infections. Infection caused by both of these organisms is rare in people with normal immune systems. And both are quite serious for those with compromised immune systems. The treatment for the bacteria will most likely continue for a year. The fungal treatment will continue for the rest of his life.

There is still a lot of drainage from the tubes in his chest which is most of the source of his pain. So, he's still on a good amount of pain killer. The pain killers are causing some confusion and strange thoughts. This happens to most people on heavy pain meds I believe. If you've ever been though this with someone, you know how hard it is to witness. If the drainage would just slow down enough for them to feel comfortable removing the drainage tubes, we could get him off the pain meds. His surgeon also says that there is still air around the lung. He would rather wait to remove the tubes instead of rushing it and possibly having to do something again later. Chris has been on a continuous insulin drip because the steroid was increased for the surgery. He should be off that tomorrow and put back on the shots. I was told that when the drip stops, he would be moved to the 4th floor again. Since he still has the drainage tubes, I don't know if that will happen right away.

I have been trying to be at the hospital early enough to catch all the doctors as they arrive. Otherwise, I don't know if I'm getting all the correct information. Though the nurses have been great.

Wed 10-31-2012 Not much change today. The surgeon will be reviewing a chest x-ray taken today. Depending on what it shows, he may remove the chest drainage tubes tomorrow.

Thurs 11-01-2012 The daily chest x-rays haven't shown much change. Chris has been off oxygen for a couple days and there haven't been any fevers. Based on all that, the surgeon decided to remove one of the chest tubes today. Chris still has some air around the lung. And the doctor would have like to see the lung fill the space more. Removing one tube would at least make Chris more comfortable. If he does well over night, the other tube will most likely be removed tomorrow.

With regard to his swelling; The bottom line is that his albumen is low. The infections just makes things worse. He's been put on a diuretic (lasix) which has helped him eliminate fluids faster. He will also be placed on an IV of IG (Intravenous Immune Globulin). This will do two things. It will help the lasix work better and it will increase the protein (albumen) in his system.

Chris' appetite isn't what it had been. And his mood has been a little dark the last couple days. He's quite frustrated with the limits they have on his mobility. Until the chest tube is removed and the pain meds are decreased, a nurse needs to be with him when he gets up to walk anywhere. He doesn't feel the need for that, of course, and chooses to debate it with every doctor and nurse that enters the room.

The doctors all think he's been improving. The improvements have been small in my view, but they are improvements nonetheless. This all could have been so much worse, if that's even possible. One of the transplant doctors told him yesterday that if this had happened just 10 years ago, he would not have survived.

Sat 11-03-2012 The surgeon was too concerned with Chris' lung not filling the space to remove the second chest tube. A broncoscopy was done this morning to see if there might be a mucus plug keeping the lung from expanding. They found nothing, but did say that everything looks good healing nicely.

Chris was able to take a real shower this morning. It really lightened his mood. He has been taken off the pain med drip, and now has a pain patch. Extra pain meds are available should he need them. Getting off the IV drip brings him one step closer to mobility freedom. It also looks like he was given IV albumin today. The lasix has been working. The swelling is very slowly starting to subside. His feet and hand still look like balloons though.

Mon 11-5-2012 The news has not been good today. Chris' lung still isn't inflating adequately. After reviewing a CT Scan done last evening, the surgeon has determined that the chest tube is not doing it's job. It was removed and a smaller one has been placed in a better position.

We also learned late today, that the infection has worsened in his good lung. The plan of attack is to slowly eliminate the steroid as steroids feed infections. With no steroids in Chris' system, the antifungal and antibiotics he's been getting should work better. We aren't giving up!

Before we got that news, Chris had been in good spirits. The physical therapist got him up and walking the hallway. He did three laps around the floor. He was a little winded, but he has been having trouble breathing anyway. The new chest tube should help his lung inflate which will improve his breathing.

Tues 11-06-2012 The news just isn't getting much better. Chris is fighting four bacterial or fungal bugs. Rhizopus, Norcardia we've known about. Now we can add Aspergillus and Pseudomonas. The latter being a contagion, so we have to robe up in the room again. And the latest CT scan shows a larger amount of infection in the good lung. He is already on the meds they'd use to treat most of what is there. Another antibiotic may be added. The new chest tube is doing it's job. His lung is inflating now. I'm hoping by tomorrow he's doing well enough for the tube to be removed. It really is causing him an awful lot of pain.

Wed 11-07-2012 The rhizopus (mucor) infections are usually found in about three areas. The lungs as in Chris' case, the sinuses and the brain. Chris had an MRI to see if in fact the infection had migrated to his brain. Happily, the MRI showed nothing unusual. The surgeon is also happy with the left lung. He took Chris off suction. If all goes well, the chest tube will be removed tomorrow. Now, if they can just get the infection knocked out.

Thurs 11-08-2012 I got a call making sure I'd be at the hospital by 8:00 this morning for a "family meeting". I was, of course. A psychologist showed up first followed by Chris' doctor and a nurse. Quite ominous. Thankfully, this was not a meeting to tell us that they've given up. What they did want us to understand is that things can go either way. And that they are going to give the antibiotics time to do the job. We can expect Chris to be in the hospital for least another couple weeks. Another CT scan will happen next week. Praying for improvement by then. They did see an infection of some type in Chris' sinuses. The ENT doctor took a look today and didn't believe it to be the Rhizopus Mucor. A procedure to clear the sinuses out is scheduled for Monday morning. And a sample will be cultured to make sure it isn't Mucor. The chest tube was not removed today as we thought it might. An air pocket developed again. Again, the surgeon feels it will take a little more time for Chris to heal.

Chris has had a few old friends come by to see him. And I brought his guitar up yesterday. Both have helped bolster his spirits. There was a lot of laughter today, despite the "family meeting".

Tues 11-13-2012 The news is good so far. Chris had the sinus surgery yesterday, and all went well. The chest tube was removed this evening, and according to the lung surgeon, Chris' latest CT scan (from this morning) shows that the infections are being effected. The infectous disease doctor should have more detail for us tomorrow.

Wed 11-14-2012 Well, it looks like Chris may be in the hospital for quite some time. The cultures of what was removed from his sinuses is in fact growing. And the growths are mold. From what I understand at this point, mold in the sinuses is serious enough to warrant many many cleanings. And I mean many, many. An aggressive approach is necessary to keep the mold from spreading to the brain.

Sun 11-18-2012 OK, it may not be as many cleanings as I was lead to believe, but Chris still will have his sinuses cleaned out again this Tuesday morning. He will also be using a nasal wash concoction that another BMT patient who was much more critical used and now recommends. Chris is feeling pretty good. We'll be spending Thanksgiving in the hosptial, but hopefully, it won't be too long after that he is released.

Wed 11-21-2012Note that Chris has been moved to another room on the same floor. Call or check at the nurse's station if you plan to visit.
Chris' sinus operation went better than the first in terms of recovery. He was back up to his room in no time without the standard post-op equipment and bandages. It was like it had never happened. There will be new cultures and he may have it done again next week. The renal doctors are on the case once again. This time to better manage the fluids without taxing the kidneys. We should know how well things are there tonight.
They have removed Chris' "safety aid" from his room. Yes, he's doing that well. They did move him to a room closer to the nurse's station in case there is a problem. But I'm pretty comfortable with not having anyone in the room now. He's been pretty steady lately. Last night was the first mention we heard from a doctor about releasing him. It is really up to the infectious disease doctors at this point.

Sat 11-24-2012Things haven't changed too much. Chris has been a little more fatigued the last few days which is being attributed to some medication changes. In general, though, he's feeling pretty good. So far the cultures from the last sinus cleaning have shown no indication of the mucor. Pseudomonas is present, but is not causing an infection. This is common.
To update - Chris has been fighting four different classes of fungus or bacteria. There are two types of one (pseudomonas) bringing the total to 5 bugs. Most of the antibiotics he's getting are IV. Once he is switched to all oral meds we can talk about him coming home. They have been monitoring his kidneys closely because one of the antifungals can stress the kidneys quite a bit. So far the kidneys have been steady.
Sun 11-25-2012 There really is no indication as to when Chris will be released. The doctors want to make sure he has a proper dose of the IV meds before switching him to oral. And he may be there for a while after that happens. I would suspect that more scans will be needed to determine the effectiveness of the medications.

Mon 11-26-2012 The CT scan this morning showed that the infections are being effected, however there is an area in his left lung that isn't looking good yet. Chris will be switched from one IV antibiotic to an oral today and will be monitored for adverse reactions and to see how effective it is. Chris is still feeling pretty tired and breathing a little heavier than he was a few days ago. But he's up and around taking walks in the hallway and being as active as you can be in hospital room.

Wed 11-28-2012 Areas in Chris's lungs show improvement. One area in his left lung shows what looks like a new infection. Another endoscopy of Chris' lung is scheduled for tomorrow. They hope to get another culture to see exactly what might be causing the infection of the new area. His physical condition doesn't seem different to me, but his BMT doctor thought that Chris seemed to be breathing better today. We still have no idea when he will be able to come home. A fact that as you'd expect doesn't sit well with Chris. I was hoping he'd be well enough to come home next week. I've stopped speculating for now.

Sat 12-1-2012So far what is showing up in the cultures from the lung endoscopy (broncoscopy) on Wednesday are "floaters" of the mucor fungus. They aren't growing at this point. Another CT scan is scheduled for Monday. If the infection in his left lung looks worse, they may remove more of that lung. As if most of us don't know the severity of these different infections, the Infectious Disease doctor told Chris this morning, that any one of these infections if left untreated would have cause an unrecoverable pneumonia.

Mon 12-03-2012 : The CT scan has not shown a change for the better in the left lung. This is the side of the surgery. There is discussion of removing more of that lung. We are waiting for a decision from the surgeon. More worrisome, though, is an area in his right lung (the good lung) that has gotten worse. Chris is on every medication available to treat bacterial and fungal infections. The only hope now is that the new area is psuedomonas, a bacteria that he has only resently started treatment for. If it is not, well, there is nothing left to give him. The infectious disease doctor is not willing to call it yet. As long as he has hope, we do.

Tues 12-04-2012 After comparing Chris' last two CT scans, word is that the surgeon didn't think the infection had changed. He also doesn't feel it would be safe for Chris to have anymore of his lung removed. The BMT team meets on Thursday and will be discussing Chris' case at that time.

Wed 12-05-2012 As much as I wish I could be, I'm not able to be in the room every time a doctor or NP talks to Chris. I think from now on, if I post in response to something that was told to Chris when I was not there, I will note it. A couple of the doctors I was in the room with today, were not aware of a meeting tomorrow. I don't know where the communication broke down. Maybe we will hear about a meeting later today.

Here's the latest from what I did personally hear this morning. Chris will continue treatment for another week. Depending on what the next CT scan shows, he can expect to be released Thursday the13th. He will then continue to receive treatment on an outpatient basis several times a week with periodic CT scans to monitor the progress.
More to come as we know it.

Sat 12-08-2012 Not much has happened the last few days. There was talk of doing a needle biopsy of the area of concern in Chris' right lung, but because the infection is so spread out, there was too much of a chance that the sample wouldn't be good. The final consensus was to wait to see what another CT scan shows on Monday. Meanwhile a rash has developed which could be either a reaction to one of the drugs or GVHD. I knew that they were reducing some of the immunosuppressives in hopes that his own immune system would start to kick in and fight some of these infections. I found out yesterday that he'd been taken off some of them all together. So, having GVHD show up now wouldn't be a surprise. Also, his bloating has reduced significantly. He went from weighing 188lbs on Thursday to 177lbs on Friday. This is happening without the aid of Lasix. Although Chris does tire easily, he really is doing pretty good.

Mon 12-10-2012 The CT scan was done this morning and preliminary results are that the infection in his right lung looks better and the left lung looks the same. A biopsy of the right lung has been put on hold. Chris has been complaining of sinus congestion. The ENT doctor has been asked to take another look. His rash has gotten worse. A biopsy of that was taken this morning. We await the result. Again, it wouldn't be surprising if it is GVHD.

Tues 12-11-2012 Here is the latest. The biopsy of Chris' rash was inconclusive. It could be an allergic reaction or GVHD according to the pathologist. Duh. In hopes that it is an allergic reaction, a suspect antibiotic has been switched for another. In the meantime, the rash is being treated with ointments. Chris has felt somewhat unsteady the last few day. It is thought that he may be getting slightly dehydrated. It is a balancing act trying to get his swelling down. His body has been working at it all by itself. The plan to release him by Friday is still a go so far.

Wed 12-12-2012-- Chris is coming home tomorrow.

Fri 12-14-2012 Chris is home. But he is very weak. We have to go into the clinic everyday once again. This time so that he can get the IV antifungal. He has two weeks left. All the other antibiodics and antifungals are either oral or he's finished the course. He will also get follow-up CT scans and an office visit with Infectious Disease. Being "turned-out" so to speak is pretty rough at first. All along someone is there to make sure he is given his meds on time, check his blood sugar and vital signs. Suddenly I have to play nurse. And he's not an easy patient to a newbie. If that isn't enough, a serious issue has developed on my side of the family. I don't feel comfortable leaving him alone for too long, so I probably won't be going into work for a while. Needless to say, the stress level is high. Still, it is great to have him home.

Sat 12-15-2012First,it looks like Chris' phone is MIA. So, you may want to either call me or send an email. (You can copy me as he hasn't had the desire to sit at the computer yet.) When you do talk to him, he will tell you he's doing great. He is not! Chris' legs are very weak. He has a great deal of difficulty climbing stairs and fatigues quickly just walking around. Just a week ago he was doing roughly the equivelant of a 1/4 mile in the hospital. His potassium level has been very low requiring a dose via IV at the clinic this morning and adding yet another pill for him to take everyday. I don't think I mentioned that the rash seems to have been an allergic reaction. Once the proper course of the suspect antibiotic was done, the rash disappeared. He also is no longer retaining fluid weighing under 170 now.

Tues 12-18-2012 The news is a little better. Chris has been working at gaining his strength back. But it is up and down. Today, he was up and about moving slow and deliberate. Yesterday he surprised both of us by climbing two flights of stairs back-to-back without holding the rail or taking a rest. We counted 29 steps total. He then took the front stoop without having to pull himself up as he needed previously. I think it gave him a boost to know he can do it and has not been shying away from using the stairs in the house for excercising. He's been sitting up at his computer the last few days also. Still long days at the clinic for another week and a half.

NEW Mon 12-24-2012 It has been an interesting few days. We tried to make the best of my birthday. Chris booked a room for a couple days downtown. Still having to go into the clinic for several hours every day, we couldn't go far. Chris really wasn't doing too well. He had enough energy to have a nice meal one night. So, apart from the trips to the clinic, that was really all he could handle.

I had a very sobering discussion with one of the nurse practitioners treating Chris. You know it is going to be that way when you are called out of the room to talk. It isn't necessarily something I didn't know, but hearing it added to the anxiety I've been experiencing the last few days. My first question to her was, does everyone feel that the infections will clear up? Her answer was, "we don't know". Things could still go either way. My fear right now is that he catches something else that throws him over the edge. The N.P. felt my fears were not unfounded. "The common cold can kill a transplant patient." was her response. I've been pretty nervous when we are around a lot of people. Especially with the flu starting so early this year.
Here's the latest. Because of the antifungal, Chris hasn't been retaining potassium despite high doses of supplement. Low potassium effects kidney function. And his creatinine numbers have been very high. Today it was decided to hold off on the antifungal for a couple days. This gives him (us) Christmas Day off! So, Merry Christmas Everyone!!