Thanksgiving at the Blott's

Sandy and Elizabeth B (above)

with Hannah (below)

Elizabeth, Roger's back, Sandy, Jill, Cameron's back and Jay's head in the foreground, above right.

Becca, Sandy, Cameron & Joanne, above left.

SSS: Singapore!

Alex (niece) organizes the first ever Official National Movement of Singapore (ONMOS) with local celebrities. Dianne is above, center.
(click images to enlarge)

Sandy's Birthday #43

Forgive the hack job...the layout tools are pretty crude (either that, or my skills are crude)

Swami asks: Is it inappropriate for a husband to throw a birthday party for his wife while she's in chemoradiation therapy? Even if it is a spur of the moment decision?

Amy (sister-in-law) and Brian, at right

Bobby (brother), Sandy, Lauren (niece), Beth (sister), Riley (THE dog), Hannah (daughter), Chris (brother-in-law), Ryan (nephew), and Haley (daughter), at right

Ellen, Beth, Sandy, Bobby, and Janet (right)

Ellen, Beth, Topper, Sandy, and Bobby (below)

UPMC Evaluations

It is now the Monday following Thanksgiving and people want to know how the week went. For those who don’t know, Sandy and I spent the 3 days prior to Thanksgiving (Mon-Wed) at University of Pittsburgh Medical Center (UPMC) for Sandy to undergo medical evaluations for a possible live-donor liver transplant. This is one of the surgical options for treatment of patients with PSC and for some cases that include cholangiocarcinoma.

We are very, very fortunate that Sandy’s sister, Beth, has been so willing to give should transplantation prove to be an option for Sandy. It is the most generous gift I can imagine anyone giving.

We met with a number of specialists—hepatologists, surgeons, and so on. UPMC repeated a number of studies to get current data, including CT scans, xrays, stress tests, and drew somewhere north of 30 vials of blood. No, Sandy did not shrivel up like a prune! UPMC will review the results of these studies and will then meet as a group to discuss options. UPMC uses a multidisciplinary board approach, much like Hopkins. These boards are made up of several different specialists who are involved in treatment decisions. This group will meet this week to discuss her case, and will form a consensus opinion. Like you, we sit and wait to see what UPMC’s opinion is.

We actually found that we had some free time together while there. We went out to dinner a couple of nights and even caught a movie—Casino Royale, the new James Bond flick. By the way, Daniel Craig is the best Bond since Sean Connery and adds a bit of a bad-ass attitude to the character. We also managed to find a Cold Stone Creamery one night (I'm still full).

Sandy and I would like to thank a few people for their help last week. First, Ted and Theresa S for loaning us their house in Fox Chapel, PA, just outside of Pittsburgh. We found it very comfortable there (and convenient!) and appreciate their opening their home to us. Thanks also go out to the Young’s and the Huck’s for taking Hannah and Haley in during our absence. It was nice to have a couple of nights off from carpools to the gym and the pool…and no homework!

On Thursday, we enjoyed a traditional Thanksgiving feast with the Blotts and their extended family. We have grown very close to all of them over the years. The Blotts are friends from our old neighborhood and still live nearby. It was a great meal and relaxing afternoon/evening, which we really appreciated.

Friday found us at a lacrosse tournament in Annapolis all day. Hannah’s Sky Walkers team played very well, and Hannah had a great day, too. Haley even filled in for the team in goal because we needed another goalie, playing against teams that are 2, 3 and even 4 years older than she is. It was a beautiful fall day in the Mid Atlantic, sunny and about 70 degrees. If you happen to be one of the people reading this from places like Chicago, Wisconsin, or Michigan, then... eat your heart out! If you happen to be reading this from your home in Perth (Aldersons!), then...I don't want to hear about your beautiful summer weather!

I hope that you all enjoyed your families and had a very happy Thanksgiving.

Sandy, Hannah, and Haley - November 2006

This is just funny!

Where the heck is Heeney, Colorado, anyway?
And what is it that you actually do there?!?!

Diagnosis & Major Milestones

Some parts of this web log provide basic information about Sandy's diagnosis, treatment, and her progress. It will not engage in speculation in any way. Hopefully, this will provide enough detail to help you better understand her condition and to keep you informed through her fight.

Sandy was first diagnosed with Primary Sclerosing Cholangitis (PSC), a progressive disease of the biliary tree that causes stricturing and eventually harms the liver. The PSC diagnosis was in September 2005, followed by the diagnosis of a cancerous condition called cholangiocarcinoma (CCA) in June 2006. PSC is rare, and CCA is even less common than PSC. It is thought by some that this type of cancer may be caused by PSC, though no one really knows for sure.

Major Milestones:

August/July 2005
Initial onset of symptoms: pruritis, jaundice, and fatigue.

September 2005
PSC is diagnosed.

October / November 2005
Excellent response to temporary stent. Stent removed in October, Sandy resumes normal activities later in Fall and energy improves.

March / April 2006
Symptoms return and escalate, images indicate possible mass in/on/around biliary tree.

April / May / June 2006
Multiple procedures intended to relieve symptoms of PSC, qualify and diagnose the possible mass. Despite multiple negatives, results of these procedures are inconclusive.

June 2006
Surgical exploration confirms presence of cholangiocarcinoma (CCA) cells on common bile duct and in some nearby lymph nodes.

June / July 2006
Treatment options explored, case reviewed with alternate institutions.

August / September 2006
Sandy undergoes chemoradiation therapy daily for 6 weeks, based on Mayo clinic protocol.

September / October / November
Recurrent symptoms from obstructions require repeat ERCP's to place stents. Procedure repeated two more times over next 4-5 weeks to try different stent types and placements. Sandy is getting proficient at recovering from these procedures. That is no small accomplishment.

October / November 2006
Hopkins wants to "wait and see." Univ. of Pittsburgh Medical Center (UPMC) accepts Sandy as candidate for live donor transplant. No harm in pursuing the preferred option of transplantation with one while the other "waits and sees," right?

November 20, 2006
Sandy's evaluations at UPMC scheduled to begin.


There are two postings in this web log that provide details about PSC and cholangiocarcinoma (CCA), including some images to illustrate the biliary structure. Look in the index on the first page of the blog to find both discussions.

cho·lan·gi·o·car·ci·no·ma

An adenocarcinoma of the intrahepatic bile ducts.

Cholangiocarcinoma is an adenocarcinoma of the biliary duct system. It is a rare cancer with an incidence of 1-2:100,000. Its risk factors may include environmental exposures such as polyvinyl chloride or Thorotrast (thorium dioxide); however, this is controversial. It is also associated with the parasite opisthorchis viverrini and clonorchiasis - liver fluke. Other risk factors include hepatolithiasis, congenital liver disorders, thorotrast and ulcerative colitis - commonly when associated with primary sclerosing cholangitis. It is NOT associated with hepatitis B or liver cirrhosis.

Cholangiocarcinoma is considered curable only by surgical resection, and very often the disease is discovered too late for successful surgery. Chemotherapy has traditionally been seen as largely ineffective, but the chemotherapy agent gemcitabine (Gemzar) is often prescribed. Recently, there has been some success with the GFLIP protocol (Gemzar, 5-FU, leucovorin, irinotecan, and cisplatin or oxalyplatin), a protocol first developed and shown to be useful for pancreatic cancer.

A bile duct is any of a number of long tube-like structures that carry bile. Bile, required for the digestion of food, is excreted by the liver into passages that carry bile toward the hepatic duct, which joins with the cystic duct (carrying bile to and from the gallbladder) to form the common bile duct, which opens into the intestine. The biliary tree (see below) is the whole network of various sized ducts branching through the liver.

The top half of the common bile duct is associated with the liver, while the bottom half of the common bile duct is associated with the pancreas, through which it passes on its way to the intestine. It opens in the part of the intestine called the duodenum into a structure called the ampulla of Vater.

Blockage of the bile duct by a cancer, gallstones, or scarring from injury prevents the bile from being transported to the intestine and the active ingredient in the bile (bilirubin) instead accumulates in the blood. This condition is called jaundice and the skin and eyes become yellow from the bilirubin in the blood. This condition also causes severe itchiness from the bilirubin deposited in the tissues.

Descriptions and images are borrowed from answers.com and wikipedia

Primary Sclerosing Cholangitis (PSC)

Digestive system diagram showing the bile duct

The image above is an intraoperative cholangiogram, which is an X-Ray of the bile ducts during a laprascopic cholecystectomy. Sandy has had several of these procedures for diagnostic purposes as well as to allow doctors to deploy stents in the ducts. Stents are temporary devices to used help relieve constricted areas in the ducts and restore normal flow.

Sandy was diagnosed with PSC in September of 2005, shortly after the initial onset of symptoms.

Primary sclerosing cholangitis (PSC) is a rare, chronic disorder of the liver in which the bile ducts outside the liver (extrahepatic bile ducts) and/or inside the liver (intrahepatic bile ducts) become inflamed, thickened (sclerotic), narrowed, and finally obstructed. This is a progressive process that can in time destroy the bile ducts and the liver.

Primary sclerosing cholangitis is also commonly called idiopathic sclerosing cholangitis ("idiopathic" means the cause is unknown) or just sclerosing cholangitis. Sclerosing means "scarring," and cholangitis comes from cholangio, referencing the biliary region. Collectively, the ducts make up the biliary tree.

What causes primary sclerosing cholangitis?
The cause of sclerosing cholangitis is not known, but multiple theories exist. One such theory is that PSC is an autoimmune disorder, and we have found this to be credible in our experience with Sandy. Some believe that PSC may be a pre-cancerous condition. This would seem to be the case with Sandy, as well.

What are the symptoms of primary sclerosing cholangitis?
PSC often triggers jaundice (yellowing), generalized pruritus (itching all over the body), upper abdominal pain, and infection.

As PSC progresses, the disease causes cirrhosis of the liver (irreversible scarring of the liver) and liver failure, leading to the consideration of liver transplantation. PSC is, in fact, one of the more common reasons for a liver transplant.

Portions of this description were borrowed from answers.com and wikipedia

Celebrity Sign-a-thon!

Cyclist Lance Armstrong, Rod Stewart, President George Bush, Tennis players Leyton Hewitt, Chris Evert, Billy Jean King and Robby Ginepri, NY Jets coach Eric Mangini, and Baltimore Ravens coach Brian Billick are just a few of the dozens of people who have sent their good wishes to Sandy.

These things help boost Sandy’s spirits—she looks at them often and they really make a difference in her day.

Who do you know? Have them sign something and send it to Sandy with the message “STAY STRONG SANDY!”

Family 2005

Steamboat - March 2006

Sandy, Hannah, and Haley

Sandy on the Boat - 4th of July 2004

About This Blog and How You Can Help

The primary objective of this blog is to share updates with you about Sandy’s health and her fight to win. The fact that you are here probably means that you care and cheer for her progress, and that makes you part of the team.

I have found it challenging to communicate with everyone regularly, and I know that there have been times that this has been frustrating. I appreciate everyone's understanding on this point and trust that this blog will help keep you up to date.

Your support has been tremendous. Not surprisingly, our families and a few very close friends stepped up instantly. Those are the friends that you expect will step up and ours have not disappointed. Beyond this close knit group, the response is equally impressive. The cards, meals, rides for our girls, and just good, friendly, optimistic support have been very helpful. A few old friends of Sandy’s have also reconnected, to show their support and help in any way that they can. Together, all of you have helped Sandy to feel loved and supported in a way that she has never known before. I will always be grateful to you for this.

There are a couple of favors that I would like to ask of you. First, here is what you can do to help:

Please help with the campaign for signed photos and other items with the message “STAY STRONG SANDY!” Reach out to friends and friends of friends to see who might be willing to send Sandy the “SSS” message and continue to grow her circle of support. Also, you can check back here to look for a section to be added to show the cool messages from athletes, coaches, celebrities, and politicians. Sandy gets an incredible boost from these things and looks at them often—keep ‘em coming! They really do matter!

Second, send me your Sandy stories (full names will not be disclosed). Got a picture of Sandy from fifth grade wearing argyle socks, saddle shoes, and pig tails? How about one showing an especially acute hangover in college? Send the pictures! You can send them to me electronically or contact me through this site to arrange to send them by snail mail. We will all enjoy your recollections, whether they are fun and uplifting or even embarrassing. Yes, these are serious times, but there is no reason this can't be fun and, perhaps, even entertaining.

Finally, I hope that this will also serve as my thanks to everyone who has been so supportive. We have had many laughs together over the years, and these are the best medicine of all.

Thanks for being an important part of the team.

--Will