Tuesday +139 (Evening)

Jackie has not felt well for the last week. Some of her nausea is back. She has had some intense muscle/bone pain. We don't have any idea why, but it has required bed rest and pain pills.

The good news is that her latest blood tests (yesterday) show substantial improvement. Her RBC (Hgl) increased to 11.3 from 10.7 last week. Normal for a female at Jackie's age is 12-16 so she is not from being "normal". Her WBC increased to 3.2 from 2.3. Normal is 4.8 to 10.8. Her ANC count increased to .9 from .8. Normal is 1.9 to 8.0. Jackie's platelets increased to 110 from 98. Normal is 130 to 400. Jackie has been within normal ranges in the past. She doesn't have far to go to once again be within normal range for platelets.

Until next time....


Bruce and Jackie
From Pryor

Thursday +134 (Evening)

Jackie had another CBC this week. With the exception of platelets, all numbers were improved. Her RBC (Hgl) was 10.8. Her WBC count was 2.5 with an ANC of .8 (800). Her platelets had dropped to 97. The reason for the drop is unknown. Platelets, however can fluctuate a good deal.

Jackie has not felt very well this week. She has had a lot of aches and pain. Her nausea seems to be improved, however. She is still losing some weight. Without me to constantly nag she doesn't eat as she should.

I will post again when I have more information.

Until Later...

Bruce & Jackie
From Pryor

Sunday +131 (Sunday Evening)

Not a great deal to report. Jackie continues to have good and bad days. She is still tired much of the time. Much of her time is spent on the sofa. She has been able to get out for short periods. She went grocery shopping this week. In Pryor, the sight of someone walking around with a surgical mask draws a lot of attention. She was also able to attend a baby shower in Tulsa this weekend.

Jackie will have her weekly CBC done on Tuesday in Tulsa. Hopefully her counts will continue to be good. I'll post the results as they become available.

Until Later...

Bruce and Jackie
From Pryor

Tuesday +127 (Morning)

Just a quick update to let everyone know how Jackie is doing since her recent return home. She is doing well. She continues to be negative for the infection that kept us for an extended stay in Rochester. Her blood counts continue to see-saw somewhat. Last week her RBC (Hgl) was 10.1. Her WBC count was 2.1 with ANC at .6 (600). Her platelets skyrocketed to 167.

Yesterday's CBC test showed a RBC (Hgl) at 10.3 with a WBC of 2.3 and ANC of .75 (750). Her platelets remained the same at 167.

All-in-all she is feeling well. She is still short on energy, and she still has some "bad" days. These, fortunately, have been fewer and further between.

Keep checking the blog....I'll update once per week or so.

Until Later....


Bruce and Jackie
From Pryor

Tuesday +120 (Evening) Headed Home

Met with the docs today and we are headed home again. They feel the infection Jackie experienced was localized to the line on the Hickman catheter. She has not had any fevers and feels fine. They will continue to conduct blood draws at home and do a final blood culture at home to make certain all is clear. If nothing else happens we won't return to Rochester for about 4 weeks!

Jackie's counts have done well since once the infection cleared. Her RBC (Hgl) is 9.9. That is down a little, but not too bad. Her WBC count is still good at 2.8 with ANC at about 1250. Her platelets have recovered nicely to 127. These numbers are more than a day old. I would guess current numbers might be a little better.

They are placing Jackie on a high dose of Bacterim to make certain the infection has cleared. This can depress the blood counts. If this happens her dosage may need to be reduced.

Until later...

From Rochester (but not for long)
Bruce and Jackie

Monday +119 (What's Your Line?) Evening Update

They removed Jackie's central line late this afternoon and switched her to oral antibiotics. She will be on a fairly high dose of Bacterim for a week. They don't plan on any more blood cultures at this point. We have an appointment with the transplant doc and infectious disease doc tomorrow afternoon. I think they will clear us for a return to Pryor.

It is interesting to note how the Internet is a great leveler. Since the bacterial infection Jackie picked up is rare the nurses and physician's assistant didn't know much about it. They did the same thing I did. They jumped on the Internet and did some quick research. Both declared it "BAD". In fact the PA must have read the same web page I read because she remarked the bacteria had been reclassified from Pseudomonas. What she failed to do was read the rest of the page and see that it rarely caused significant problems in humans. If you are a tomato plant, the bacteria is BAD news.

If we had listened to the nurse and PA we would have believed the worst about the infection. Since they declared it BAD Jackie was worried sick in spite of the fact that I was telling her not to worry. What could I know? I'm not a doctor! Once the nurses and PA consulted with the transplant doc and the infectious disease doc they realized it wasn't really so BAD. They only realized this when the got the order to pull Jackie's central line and put her on oral antibiotics.

I guess my point is the Internet can make anyone an instant expert on anything...if you use it! I can assure you the husband of the lady on her 3rd transplant is more of an expert on her disease than any oncologist in Tulsa, OK. Why? Because he has spent the last 6 months reading everything on the web regarding the disease. He's the true expert! Not the guy that spent 8 years in med school. Granted, he may not know a thing about setting a broken leg or performing breast enhancement surgery; but for MML he would be my go-to-guy!

In the past people attended institutes of higher education because they were repositories of knowledge. The colleges had vast libraries of books for the incoming students with "skulls full of mush" to use to fill their heads with knowledge. The Internet now decentralizes the library of knowledge. In 30 or 40 years will we need higher institutes of learning? I don't think so!

Monday +119 (What's Your Line?)

Quick update: The hospital just called. In 45 minutes they will remove Jackie's central line and switch her to oral antibiotics. A sure sign the infection is not/was not serious.

Bruce

Sunday +118 (Evening)

Ok, we have a bacterial culprit that is causing the extended stay in Rochester. Ready for some Latin? It is Stenotrophemonas (Xanthomonas) Maltophilia or as the microbiology techies like to call it; S. Maltophilia.

It seems this is a fairly rare Gram Positive aerobic bacteria. It used to be classed (by mistake) as Pseudomonas. It occurs in patients in hospitals with catheters and central lines. Imagine that!

In any case, it is rarely serious and easily treatable. The standard treatment is with the antibiotic they are currently using; Meropenem. It is also treatable with some oral meds so they may switch over to something else. We will know more tomorrow.

Jackie is feeling fine with no fever at all. Her counts have actually improved in most cases. Her RBC (Hgl) shows a decline to 9.2. I don't feel this is accurate. At 9.2 Jackie would be tired with no energy. That is not the case. Her WBC count has improved to 2.9 (with ANC at 1.25 (1250)). Her platelets have also improved to 99. The fact that she has no fever and the platelets have improved may mean the infection may have already been resolved. We should have culture tests from last night by tomorrow morning. If the culture tests would show a negative result I would expect them to release Jackie with an oral prescription for Bacterim (or similar).

Six degrees of separation...I received an email from Sandra Eubank in Nantucket. She said they had an opening at her art gallery and that a Dr. Klom attended. In speaking with him she found that he did most of the central lines surgeries for BMT patients at the Mayo Clinic. He also owns a house in Nantucket about 1 mile form us. Dr. Klom was the guy who did Jackie's central line! Small world.

Until Later

Bruce and Jackie
From Rochester

Sunday +118 (Afternoon)

We just returned from the hospital for the morning IV antibiotic treatment. We still don't know a lot, but it seems the infection is in one of her central line lumina (tubes - she has two). This is a fairly common condition. They will classify the exact bacteria (probably today) and then decide what, if anything, needs to be done to treat the problem. It is possible they could do one of several things:

Nothing. Jackie has not had any fever at all for the last 48 hours. It is possible the infection has already resolved.
Continue IV antibiotics: If the bacteria is a stubborn or resistant strain they will continue with an IV antibiotic.
Switch to oral antibiotics: If the bacteria is common and easily treated they may switch to oral meds and send us home.
Pull her central line: Since the infection is in one line they may remove the central line entirely. I think there is a strong chance they will do this. It may sound strange but we both hate to see it go. It makes blood tests SOOOOO much easier! No needle sticks by nurses who don't have clue what they are doing.

We had a long talk today with the lady's husband who has had multiple transplants. You may recall her in previous blog posts. She is now on transplant number 3. She is not doing well at all. She is suffering from what I believe to be the beginning stages of multiple organ failures. She is having lung, liver and heart problems all at once. She is day +24 on the existing transplant and day +128 overall. They have been through every problem known to exist. You may recall she is not a CLL patient. She was a multiple myeloma patient with other complications. She received a matched transplant (all three times) from a relative. The relative (sister) was not a good match. They are using a treatment protocol normally reserved for CLL patients. They have no other ideas left. You may recall she came into the transplant process very sick. They could not wait for an unrelated donor transplant. I think talking to the husband helped Jackie realize how good she was actually doing. I think it also helped him to see that even though we had been through the same, long process it is possible to get better and go home.

I am currently headed out to WalMart. When we packed we only expected to stay two days. As you might guess, I need some laundry soap, food, etc. I'm not buying anything that won't last for a 10 hour trip home, however. In other words, I'm not expecting to stay very long in Rochester!!!

Until Later...

Bruce and Jackie
From Rochester, MN

Saturday +117 (Rochester Update)

Just a quick note to let everyone know we will be in Rochester for the foreseeable future. It is 10:30 PM and we just received a lab report that says Jackie's blood cultures are positive for some type of infection. This will require a course of IV antibiotics until the cultures turn up negative. We do not know the exact nature of the infection. All I know is that it is a Gram negative bacteria. Gram negative strains can be quite difficult to cure and can be associated with some forms of pneumonia. At this time, Jackie is showing no signs of pneumonia. In fact, she exhibits no signs of being sick.

The good news is the doctors said here CAT scan showed improvement and that all was normal. This included some "ground glass" areas that showed on earlier scans. It also revealed normal lymph nodes.

The other good news is that a FISH tests was performed along with a bone marrow biopsy 2 weeks ago. The tests revealed no discernible CLL cells. She is now classed as a PCR (polymerase chain reaction - a sophisticated DNA test) negative patient. Her marrow is also 100% donor with only a tiny amount of recipient cells. The recipient cells could still harbor some CLL so they will work to reduce this to a zero level.

They did find some unusual precursor cells. They felt they were not significant and only part of the process. The doctor said the type of cells found are usually found only in children and they were a bit puzzled. He didn't seem to be worried about them at all.

Jackie's counts were mixed. Her RBC was 10.2 which was down from 11.8 earlier in the week. Her WBC count was 1.9 with ANC at 1500. This was an improvement from her earlier tests. Her platelets had drifted down to 68. This was a good indicator, along with a low grade fever, that she might have some sort of infection.

We are on our way to the hospital for the first round of antibiotics. They will run another culture and we hope to know more later. With luck, it will be a minor problem. She has not run any fever today. UPDATE: We are back from the hospital. It is 1:00 AM. They will be treating her with the antibiotic, meropenem every 12 hours.

Bruce and Jackie
From Rochester, MN