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Entry for February 29, 2008
Leap Year entry for anyone who is still visiting this BLOG. I wanted to say thank you to all the family and friends that came in to town for James Stubbs' Memorial Service. It really is amazing how many people my dad had met and became friends with over his life. Even though the circumstances weren't ideal, it was great to see all of you for a little while. Thank you for all your kind words of comfort and encouragement. This is probably my last entry. God Bless you all.

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Entry for February 21, 2008
There has been a bereavement rate set up for anyone who wants to stay at the Sheraton for $79/night. Call 410-266-3131 and ask for Patricia Cassel. Tell her you are attending the memorial service for James Stubbs to get the rate. It is good for a room either with a king or 2 double beds. Leave a message if you aren't able to speak with her directly.

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Entry for February 20, 2008
The memorial service will definitely be at Annapolis EP http://www.annapolisep.org/   on Sunday February 24th. The service will begin at 3pm, but for those of you that want to come a bit early, there will be coffee, sandwiches, and refreshments provided in the Fellowship hall starting around 2pm. In lieu of flowers we are asking people to make donations to either the Cholangiocarcinoma Foundation. Checks can be sent to

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Here is a list of some of the hotels in the Annapolis area. Disclaimer: These are average prices I have found. Of course, there are AAA, AARP, government/military, and full prepayment discounts at some or all of the following hotels, so you might get prices for less. I didn't bother blocking off rooms at any one hotel in particular because people tend to have regular brands they like or have frequent guest accounts with certain brands. Plus, there are many other local hotels/motels and B&B's in the area if you are interested, just do a search online. If you do plan on coming into town for the memorial service, if you wouldn't mind emailing me at TheStubbs@comcast.net letting me know where you will be staying and when. We just aren't sure how many people to expect. Have safe travels.

ANNAPOLIS MARRIOTT WATERFRONT: downtown Annapolis, more expensive around $240/night, but great view of Annapolis Harbor.
https://www.marriott.com/hotels/travel/bwiaw
LOEWS HOTEL: downtown Annapolis, moderate to more expensive around $160 to $200/night.
http://www.loewshotels.com/en/Hotels/An … rview.aspx
THE WESTIN: downtown Annapolis, more expensive around $179/night unless you fully pre-pay for your stay, then you can get rooms between $112 to $140/night.
http://www.starwoodhotels.com/westin/pr … rtyID=1573
O'CALLAGHAN HOTEL: downtown Annapolis, moderately priced around $140/night.
http://www.ocallaghanhotels.com/USmain.aspx
THE SHERATON: next door to Annapolis Mall, moderately priced around $120/night.
http://www.starwoodhotels.com/sheraton/ … rtyID=1266
DOUBLETREE HOTEL: near Annapolis Mall, moderately priced around $120/night.
http://doubletree1.hilton.com/en_US/dt/ … CSGBIX2VCQ
HAMPTON INN & SUITES: near Annapolis Mall, less expensive around $100/night.
http://hamptoninn.hilton.com/en/hp/hote … cn=ANDMDHX
HILTON GARDEN INN: near Annapolis Mall, moderately priced around $120/night.
http://hiltongardeninn.hilton.com/en/gi … cn=BWIANGI
RESIDENCE INN: near Annapolis Mall, moderately priced around $130/night.
https://www.marriott.com/hotels/travel/bwira
SPRING HILL SUITES: near Annapolis Mall, moderately priced around $120/night.
https://www.marriott.com/hotels/travel/bwisu
COURTYARD: near Annapolis Mall, less expensive around $110/night.
https://www.marriott.com/hotels/travel/bwian
HOLIDAY INN EXPRESS: near Annapolis Mall, less expensive around $95/night.
http://secure.ichotelsgroup.com/h/d/ex/ … tid=271379

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Here are a few things that you might like to know about the foundation.

They have established a Medical Advisory Committee (MAC) headed by Dr. Steven Alberts - head of the GI oncology department for the Mayo Clinic, he is joined by Dr. Nicholas Vauthey - at MD Anderson as well as others well established and well respected in the field of GI oncology. 

They have been focusing their attention this year on establishing relationships with the National Institute of Health (NIH) and the National Cancer Institute (NCI).  We need them to more fully understand the need for funding to be allocated to cholangiocarcinoma.  Both Dr. Alberts and Dr. Vauthey have research funded by and published for these institutes and having them on board helps assist us in getting the funds we need for research.

All the funds that have come to the foundation have been used for two purposes, outreach and patient advocacy.  Last year we attended the two ASCO conferences and could not have been more warmly welcomed.   All of the Dr's we spoke with wanted to be involved with the foundation and were excited that a group was going to step up and do some advocacy to get government funding for research into cholangiocarcinoma. At these conferences we are able to speak freely with the top oncologists, surgeons and radiologists in the nation.  We are able to make them aware of the foundation and the things we are trying to accomplish, we have established critical relationships and the work is moving forward.   This year we have and will continue to attend additional conferences and establish relationships that will help increase the focus and attention on cholangiocarcinoma.

We have had many gracious people give us use of their expertise and knowledge as we have traveled down this road.  At our last board meeting in Houston, Paula Kim - founder of PanCan (Pancreatic Cancer Action Network - her groups advocacy at the NIH and NCI is responsible for many of the last years recent developments in Pancreatic Cancer) spent several hours on a conference call with us helping us understand exactly what needs to be done to really get funding that will impact cholangio patients.  Her assistance has been invaluable to us.

We also continue to reach out to the cholangiocarcinoma community.  You will see on the new website that we intend to have more information about cholangiocarcinoma than anywhere else in the world.  Any patient that comes to the website will have everything out there at their fingertips.  We hope patients will never have to do their own research again.  Unfortunately we find that many don't find the site until a family member has died or it is too late.  We are developing marketing materials right now for oncologists that will direct their cholangio patients to the website.  We will also be attending the Oncology Nursing Society (ONS) conference in May where we will distribute to 6,000 oncology nurses information on how to direct their patients to the foundation for support and also information for hospice nurses, who deal with cholangio rarely and find it difficult and different from other end-of-life cancer experiences.

These are just a few of the things we will be doing with the funds from the foundation.  We hope in 2009-2010 to be prepared to start funding our own research into cholangiocarcinoma.  Right now we don't have ample funding to do that, however we are working hard to establish the kind of relationships that can draw the best and brightest minds in medicine to the foundation so we can begin.  We all feel strongly that we can make a difference and appreciate those who have faith in us to do so.

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Entry for February 11, 2008
It's looking more like we will be having the memorial service at Annapolis EP http://www.annapolisep.org/ on Sunday February 24th. In lieu of flowers we are asking people to make donations to either the Cholangiocarcinoma Foundation http://www.cholangiocarcinoma.org/donate.htm to help in the education and finding cures for Cholangiocarcinoma and/or the Gideons http://www.gideons.org/Tgi.web/TGI.Web. … /Give.aspx, which Jim was actively involved with. I will make another post describing all the work the Cholangiocarcinoma Foundation is involved in.

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Thanks to all of you, whom I or Jim have never met, for all your kind words.

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Entry for February 08, 2008
Late last night the Lord decided to bring one of His sheep home. At about 11:20pm Jim took one last breath in this world and started breathing freely with His God in heaven. It was a very peaceful time, Jim was asleep and didn't even know what was happening. We stayed with Jim a short while longer and decided that since he was there no longer, there was no need for us to be dwelling on a body in which the spirit has left. We stayed over night in a hotel and this morning are meeting with the local funeral home which will be taking care of his cremation. The plan is to have a Remembrance ceremony in about 2 weeks on February 23rd at the Evangelical Presbyterian Church in Annapolis. http://www.epannapolis.org/   We are looking into securing rooms at some local hotels for those of you from out of town that would like to join us on this day. Check back for updates on the exact date and time, as this date has not been verified with the church yet. We want to give enough time for those of you who will be traveling to make the appropriate arrangements. Thank you once again for all your prayers and thoughts over the last year and a half and especially the last two months. God is with us.

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Entry for February 07, 2008
We were called this morning and informed that Jim's breathing has become really short and he has become unresponsive. We were about to head out the door anyways, so we made our way to the facility. Beautiful clear day today. We arrived and saw Jim was in bed with his eyes shut and did not respond to anyting we said. He probably can still hear us, but we believe this may be the day he returns to his Lord. He is breathing very short breaths, with one deep one every now and then. What you can call "fish out of water" breathing. He has a fever and his bloodpressure is lower than normal. The color has started to depart from his extremeties. Jim Jr and his wife came down today after we told them dad's condition. Please pray for Jim to have peace in his heart and be able to let go when the time comes.

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Entry for February 06, 2008
My wife Meghan and I drove down to meet my mom at the Hospice Center today. Jim was real restless, always trying to get out of the bed by himself, but he was not in any condition to try and do this. He did get in a chair early in the morning when three of his high school basketball buddies arrived after a drive from the Philly area. Jim could not speak very well but communicated as well as possible as they reminisced of stories of old. Very special for them to come down and visit. Jim has started to get a really congested cough and breathing. We would try and sit him up and pat his back to try and loosen it up so he could get it out. It worked once, but then we had no luck. Some of the literature we have read, describe this as a regular occurence in the last few days of life. His breathing has become more labored also. We question whether to even go home for the evening, but with some help from medicines Jim starts to relax some at night and we feel he will be ok.

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Entry for February 05, 2008
Jim has been at the Deer's Head Hospice Center for about a week now. He was not very excited about the news of the move originally, but it is definitely more complete care than what he was receiving at home. I was there a few days the end of last week to visit. Beautiful setting right on a river and surrounded by woods. Very secluded, away from the hustle and bustle. Jim has had many visitors while he has been there. My mom has been there as much as she can, she has been fighting bronchitis for about a week. My wife and I are going down for a few days to visit with dad and be with my mom.
Jim has been under a lot of medications which makes him sleep most of the time we are there. They tried to cut back on some of the doses over the weekend to see if it would help him to remain a little more alert. It seemed to have worked for a little while. Continue to keep praying for strength for Carole and comfort for Jim.

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Entry for January 30, 2008
Jim has been enjoying the view from his home the past 5 days, but it seems his health declines daily. He has had caregivers there 24 hours a day, but they do not provide medical assistance. The Hospice workers come in several times during the day to perform the medical duties and are supposed to train the family members these functions until they feel comfortable in wholy leaving the medical attention to the family members. I was planning on taking off work for awhile and go down to perform these functions since Carole's eyesight, though better, does not allow her to feel comfortable handling the IV needles and drain. I was also going to help the caregiver in getting him out of bed and or chair for walks and restroom breaks, since as you all know Jim is a tall guy and needs some leverage to get him up, especially with the severely swollen (edemic) legs hindering his ability to do it himself.
All that has changed now. The social worker Carole has been working with strongly suggested he be admitted to a facility for round the clock Hospice care. The problem was finding a place which wanted to be responsible for the care he needs. As an answer to prayer and some connections with the Hospice worker, a place was found in Salisbury, Maryland that had availablility and he is being transferred today. The facility at Coastal Hospice   http://www.coastalhospice.org/    seems like it will be a nice place for him and will provide the care he needs. It is about an hour from where Jim and Carole live in Rehoboth Beach. A bit of a hike for daily trips, but close enough to go and visit at any time. I still plan on taking some time off to help give emotional support for my mom and spend time with my dad.

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Entry for January 24, 2008
We heard some good news today. Jim will be discharged tomorrow morning and be on his way home to Delaware. Carole along with a nurse liason was able to set up Hospice in home care. So no need to worry about care at a facility because now he will be at home with Carole and a round the clock Hospice worker to do the IV's, the catheter draining, and help him when needed. A therapuetic bed has already been delivered to the house so dad will be able to relax and look out over the Bay. Thank you for all your prayers. I know this is what my dad really wanted, to go home. He still is not eating that much on his own, but we are hoping that when he gets home maybe his appetite will increase. PTL for some answered prayers.

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Entry for January 21, 2008
Jim enjoyed watching the games with his son Jim Jr. He is probably not going to get transferred for awhile. My mom is not thouroughly impressed with the care staff at the Annapolis facility and really wants him to go to a beautiful private facility near their home in Delaware. She went and visited it while she was on her trip home over the weekend. They are waiting to see if that facility can get certified in using the device to drain dads fluid from his lungs. Another great problem which Hopkins seems to be saying is an affect of the cancer is the edema in his legs. They are severely swolen and it makes it very hard for him to walk. He has gained about 57lbs in the hospital without even being able to eat, it's all fluid buildup. He did eat 2 scrabled eggs and a muffin Sunday morning though, which was a good sign. My mom says to let everyone know that if you had ever thought about coming out to visit with Jim, it would probably be better to do it sooner than later. No need to make plans with Carole, do what is convenient in your schedule. The nearest airport to Jim is BWI (Baltimore-Washington International). You can always give me a call or email me with questions. Thank you, Jamison

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Entry for January 19, 2008
Jim is still at Hopkins enjoying the new beds. Hoping we can transfer him on Monday to a Rehab center. Carole went home to Delaware to check on the house, the cat, and to get the mail. But dad is not alone, he has quite a few visitors coming in over the weekend to keep him company.

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Entry for January 18, 2008
Jim was in good spirits last night after coming out of surgery. Definitely a better recovery than the day before. This morning was a bit of a different story. He was falling asleep all morning and saying things that didn't make sense which worried us, since he had thrown a small blood clot last weekend. The Thoracic surgeon came in to follow up on the catheter and we expressed our concern. He explained it was probably because of the pain medicine he was on so we decided to go with something not as potent. This seemed towork because this afternoon he was alot more coherent and even got up and made a few laps around the floor he is on. It doesn't look like he will be discharged on Friday because theyre is no available bed at the rehab center in Annapolis. The place we wanted him to go to in Deleware can't take him either because they are not familiar with the procedure of draining his catheter ever day or two. It is something new in the industry. Jim actually doesn't mind if he has to stay now because they replaced all the beds on the floor today, so now he has a brand new bed that has a temper-pedic memory foam mattress. Very comfortable he says. He is very excited to watch the football games this Sunday, so I can say he is definitely feeling better. Thanks to everyone who continue to show support.

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Entry for January 16, 2008
Well, Jim spent most of the day yesterday in the waiting room waiting to go in to have the stent inserted for draining the fluid out of his lungs. I was wrong in saying that it had been done over the weekend. He ended up getting a fever after the surgery and along with the anestesia kept him in the recovery room til midnight, almost 6 hours. The odd thing was there was blood, not fluid coming out. This morning the Dr. came in and said that there not sure why the fluid hadn't drained so Jim would have to go in and get another CAT scan, about his 10th since being at JHU. The reults that came back showed the stent had been inserted into his liver, not the lung sac, very disconcerting indeed for a supposedly state of the art hospital. Voted the #1 hospital in US News for the past 12 years except for the year 1999. Not sure if I agree. So anyways, the Dr. said they would try and get him on the surgery schedule for today, but not a definite. It turns out they did find a slot for him so they are going in to remove the catheter from it's current location and re-place it to the proper location. This could cause some severe bleeding since it was in the liver, but being in the OR they will be able to deal with it. Now we are waiting to go in to see him since the surgery has been completed and was very succesful. Maybe he will finally be released to a nursing home by Friday. He hasn't been fed anything for the past 2 days and he couldn't drink either because there might be an issue while he is under anesthesia. I know he is very hungry and thirsty.

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Entry for January 14, 2008
Well, over the weekend Jim had another occurence of fluid build up in the lungs. This time they decided to put a stent in the lung area so that when he goes to a nursing facility they would have the capability to drain it themselves without having to send him back to the hospital. Tests done on the liquid in his lungs from last Wednesday came back positive with cancer cells. Because of this incident over the weekend, the Dr.'s delayed the move to a nursing facility. He should be moving on Wednesday. His destination may not be Annapolis now,  Jim would feel more comfortable closer to their home in Deleware. He probably feels that Carole would be more comfortable since she could go home when needed instead of having to stay at friends houses for who knows how long. Thanks to the Longpree's and Staegers for chiming in. Greatly appreciated.

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Entry for January 11, 2008
Jim was sent back up to the 4th floor. Now he is in room 4 in the C wing. His new number is 410-502-0241 and of course Carole's cell. Please try to keep calling to a minimum though, especially in the evenings, and rely on this blog for updates. Thank you. He is recoviring a bit and the doctors say he should be discharged either tomorrow or Monday. My guess will be Monday as we still have to set up Hospice to come and monitor his IVs. This is also if no more complications occur. The doctors think the stent might not be performing well because there might be more blockages further down. Thanks to JeffG, the moderator for chiming in, highly appreciated. God Bless.

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Entry for January 10, 2008
Last night I received a call from my mom that Jim had been taken down to the Intensive Care Unit. He had started having complications breathing and getting his chills. Plus he was vomitting some stomach contents which had not passed thru the stent, which is still not open completely. He ended up having fluid build up around one of his lungs which was collapsing it. They drained out about a liter of fluid and seems to be recovering well. They left him in the ICU for the night. He probably will be transferred back up to the 4th floor again, but most likely not the same room he was in before. Therefore; hold off any calling until we get a new number.

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Entry for January 09, 2008
Yesterday I was visiting my dad and mom at the hospital and met up with Jim Jr. and Lori there also. Jim was still not able to eat any soft solids which has us all worried. If the stent doesn't start working then he will probably have to stay hooked up to IV's for liquids and nutrients, and may not be able to eat solids again. The Oncology team came in and met with us all late in the day to go over what the next step might be. We all have been looking on the web for different studies that Jim might be able to be involved with, but it comes down to a quality-of-life decision for Jim. They are going to look into any studies John's Hopkins may be performing on patients with Cholangiocarcinoma. We have found a study down in Houston and one in Nashville. We are also going to see if the National Cancer Institute in Bethesda is involved in a study. Please keep my family in your prayers and thoughts.

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Entry for January 08, 2008
Jim had a stent inserted late yesterday. We are hoping this will start to allow him to get down some solid foods. We are told everything went well with the insertion. This was a backup procedure to having the surgery, which was not performed on Friday.

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Entry for January 04, 2008 part 2
Thank you for all you prayers. We heard some tuff news today. As the Dr. was starting the surgery of a gastric bypass he saw that the cancer had returned and spread quite a bit. He made the decision to not do the bypass because it would disturb too much of the area. So, on Monday they will be inserting the stent as originally planned. Hopkins has pretty much done what they are going to do so we are going to look at other hospitals and clinical trials to see if we can find someone or something that may be able to help Jim and his condition.

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Entry for January 04, 2008
Jim is going into surgery this morning at 0730am. Please pray for him.

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Entry for January 03, 2008
My brother Jim Jr, sister Donna, mom Carole and I met with Dr Choti last night. He went over everything with us and explained our options in more detail. Dad was really weak and was actually going through one of his chills spells which my mom has been telling doctors about for months and noone has really listened. So now, Dr Choti walked in and saw dad in this state and finally decided to do a work up on this condition. He has chills for about an hour or two, then he spikes with a fever for about an hour. Really wears him out. At that point my dad wanted to have the stent put in instead of going through surgery because he was in a weakened state, but our family conversed and decided the surgery was a better option and the doctor felt dad was ok to handle it. The stent perhaps would only last a few months, where the surgery would be permanent. It would also allow the Dr. to see what the mass is that is blocking the stomach. Upon making that decision, we made an appointment to have the surgery Friday morning.