mid-day update Sunday

On the continuing saga of Susan's connections:

• In Friday's post we reported that the heplock in Susan's left wrist (Heparin IV lock, a peripheral intravenous line), which had become quite painful, needed to be relocated to the right wrist. By last night, it had become so uncomfortable in the right wrist that the line was removed. She also had a bout of nausea, so it was not a good night for sleep and recuperation. However, she does sound fine today and not too much the worse for wear.
  
  
• Rob Soiffer, her lead transplant doctor was in to see her around noon, and they decided to move the heplock back to her left wrist, as it is important to maintain two means of access to her bloodstream. Despite these issues, Soifer remarked that Susan is the healthiest patient he's dealing with right now. Going into a transplant, the healthier the better. We'll take it.
  
  
• The culture that has been maintained on the infection in the PIC line is now negative, so that problem seems to be resolved. However, they are planning to remove the PIC line on Tuesday after the infusion of the donor stem cells and to install a double PIC line a couple of days later.
  

Despite the few small speedbumps, Susan is still on schedule - final pre-transplant chemo treatment 1:30 AM Monday morning, a day off on Monday, transplant sometime on Tuesday. The chemotherapy is working well; Susan's white count is down around 1.2 (that is, 70% below the bottom of the usual range of 4,000-10,000), this from a high of 318. It will likely decline even further by Tuesday. This is good.

Callie and Charley are returning to New York today, but I'm going up to Boston tomorrow and will stay through Friday.

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And regarding our growing photo gallery . . .

Callie posted a photo yesterday (taken surreptitiously by our undercover operative) of the gang behind the recent rash of unsolved bank robberies in the Boston area. They had convened in Susan's room to plan their next heist, figuring a private room in the transplant unit of an oncology ward would provide great cover.

Above are three members of the gang -- Chazamatazz, Nate Lightfingers, and the Callalily Kid (in front, seated) -- caught by one of our hidden cameras in a rare moment of relaxation. Notice the glove on Nate's left hand, thin enough not to impede his exquisite touch with a safe's dial while ensuring that no prints will be left behind.

The question on all our minds is: is Susan, whose room seems to have become the gang's headquarters, an innocent dupe, a member of the gang, or, perhaps, the mastermind behind the whole operation?

Note from Callie

Charley, my mom, my dad and I are sitting here at the hospital in my mom's room (Nate was here all day too but just left). We had another visitor, Maria Krokidas, my mom's friend from college (in the pink) who, as a resident of the Boston area, has been incredibly supportive over the past eight years as my mom has traveled back and forth to Boston for appointments at Dana Farber.

So far, I am really impressed with the hospital itself which is an amazing and beautiful facility. Everything in my mom's transplant wing is run impeccably. Even more impressive is the gift store...probably the best hospital gift store i have ever seen. Seriously. We spotted a water gun that dispenses ketchup and mustard...which am definitely going back to buy tomorrow.

My mom is continuing to have chemo treatments and is feeling ok so far. It's a bit frustrating for her not to be able to go outside (or even outside her small little unit) since its such a beautiful day here in Boston. Nothing else too exciting to report...which is a good thing! My mom is loving getting to see the comments on the blog, so thank you all for writing (and for those of you who have emailed me directly as well).

That's all for now...

-Callie

News of the Day (late edition) . . . .

First, to forestall your being alarmed by the happenings of the day, which may sound a little unsettling, Bob reports that Susan looks and feels just fine.

Now, as for what might sound alarming: turns out that Susan's PIC line was infected after all.

• The PIC line (aka PICC line, or Peripherally Inserted Central Catheter), is a slender tube that is inserted into a peripheral vein in the upper arm with the tip threaded through to a large vein near the heart. It is being used for Susan's chemo treatments and will be the conduit for the infusion of stem cells in her transplant procedure.
• Although the x-ray done yesterday confirmed that the placement was good, and the line was subsequently used for her chemo "sandwich," by this morning a culture of the blood drawn from the PIC line showed an infection. (shades of her infected port, which necessitated the insertion of the PIC line in the first place)
• Susan's been put on an antibiotic, administered through the PIC, but it is not specific to the infection, since they don't yet know enough about the infection to target the optimal antibiotic.
• The technicians are maintaining the culture since it continues to provide additional information about the infection as it matures. The more they know about the nature of the infection, the better they are able to deploy the best antibiotic against it.
  

And speaking of Susan's connections, her heplock, a peripheral IV inserted in her left wrist yesterday, developed irritation at the site and became uncomfortable, so they have relocated the heplock to her right wrist. Bob reports that it is still somewhat uncomfortable. Guess Susan, though well-connected, has not been connected well after all.

Otherwise, Susan's been walking the floor for diversion and exercise - 50 steps down the hall, 50 steps back, 50 steps down . . . . You get the picture. My sister the floor-walker.

Bob mentions how the unit is really run, and run very well, by the oncology nurses, who are extremely knowledgable, well-trained, and competent. Much better than having the doctors in charge.

Susan was visited today by her medical team from Dana Farber - Dr. Nadler and Linda Drury, and later on by Dr. Soifer. Nadler emphasized that if anything was concerning her, not to hesitate to call in the attending; if she wasn't getting the responsiveness she needed, to contact Soifer immediately; if she couldn't raise Soifer, to call Nadler on his cell and he would get Soifer onto it, etc. The point is, there's focus on Susan's treatment and care as a VIP (as I know she is to all of us).

Finally, Charley and Callie, along with Nate, are coming up to Boston this evening for the weekend (actually, I think Charley is staying into next week). Assume they're there by now and all is well.

Picture of Bob Siegel with unidentified masked woman claiming to be Myra Biblowit


"How has Susan's day gone?" You might ask. Well, let me tell you.
Highlights:

• Susan's PIC line checked out OK so she has started what will be her daily chemotherapy protocol through Sunday. Think of it as a liquid sandwich -- fludarabine on busulfan bread in a 3-stage infusion that is spread out over 24 hours, with breaks in between the stages
• Late this afternoon she was descended upon by a flock of dentists (5 to be exact, and we think it's bad when we have to see even one). The reason for the oral scrutiny is that the mouth is usually the first place to exhibit signs of Graft Versus Host Disease (GVHD description under the "Risks" heading towards the bottom of the blog page)
• She has had a second line added (you've always known she's well-connected), a heplock line for IV fluids, primarily saline solution and nutrients, so she can multi-task her intake
• She has her first visitor, a masked woman claiming to be Myra Biblowit
• Her spirits are good (Susan's; don't know about the masked woman); she has been able to log on to the blog and deeply appreciates the supportive and caring sentiments you've all been offering

Contact information:

Susan Kargman Siegel
Brigham and Women's Hospital
Floor 4C, Room 53 (617-525-7883)
75 Francis Street
Boston, MA 02115

OK, first update, as I just got off the phone with Susan. Nothing dramatic to report, but then "boring" is what we want.

Susan and Bob got up to Boston about 7:30 PM last night and she checked into Dana Farber. The admitting procedure was quite meticulous -- everything she brought with her had to be wiped down with some kind of sterile solution and then sealed in individual plastic bags before it could be brought into the transplant wing. Think "clean room" as in chip fabrication plant. The night passed uneventfully. Bob stayed in a nearby Hampton Inn. Guess he wasn't clean enough.

This morning Susan had her PIC line inspected and x-rayed. This line is like a port into a vein, to be used to draw blood and to inject solutions, so she doesn't have to be stabbed every time. However, instead of being installed at a usual injection site, it is threaded up like a catheter to a position near the heart. Assuming the PIC line is still clean and in good shape (results of the integrity check are still pending as I write), it will be used for the conditioning chemotherapy, starting later today and continuing through Sunday, and then for the stem cell infusion (the transplant) next Tuesday.

Susan has her laptop with her but has not yet been able to log on. She knows that your good wishes have been pouring in and looks forward to reading them when she is able to connect at some point later in the day.

Dear Friends and Family,

This blog is your source of information on Susan's treatment for and recovery from a variant of Chronic Lymphocytic Leukemia (CLL). It will be hosted by me (Jerry Kargman-brother) with editing permission and entries by Bob, Callie, and Charley Siegel as they see fit. Susan, of course, will also have editing permission. Once her recovery is underway, blogging on her own behalf may become her preferred replacement activity for shopping during her confinement of a month or so (more on that below).

My intention at this point is to keep it simple - just the information you need for background and the news you need on how Susan is doing. Background information is in the box below. The news will be in the form of ongoing blog posts. Here is the provisional timetable for upcoming events:

• May 27: Susan and Bob travel to Dana Farber Cancer Institute (DFCI) in Boston; hospitalization will be at Brigham and Women's Hospital, adjacent to DFCI
  
• May 28: Susan begins a 4-day conditioning period of chemotherapy
• May 31: Last day of conditioning treatments
• June 1: Recovery Day
• June 2: Transplant Procedure (this is similar to a blood transfusion, but may take 2 or more hours. It is NOT a surgical procedure.)
• June 3: Susan is released to a specially prepared, environment controlled apartment (Church Park Apartments, Apartment 702, 255 Massachusetts Ave, Boston, MA 02115)
  
• June 4-30: Susan recuperates in apartment with daily trips to DFCI for treatments and monitoring
• July 1?: Susan cleared to return home, but will require careful monitoring and weekly visits to DFCI.

IMPORTANT NOTE: Unfortunately, Susan can NOT receive gifts of flowers, plants or food. These items may introduce infectious elements which her depleted immune system will not be able to handle.