Saving James

Words From the Other Day

2009-03-29T00:48:00.001-07:00

Milestone birthdays are tough. You hit 30 or 40 or 50 and you often anguish over getting so old. Well, today, March 26, 2009 is a tough milestone of a different kind because James would have been 40. It really puts in perspective how lucky we are to be alive despite the pain and hassle of life. James wanted to be here so badly. He fought with great courage and through a lot of pain to try and make it to this day. It was weird enough that his beloved Pittsburgh Steelers won the Super Bowl and he was already gone. And now this.
On his 39th birthday some of us gathered at a Mid-East restaurant. It was fairly early in the entire medical battle. I remember saying as I left that the party I really wanted to go to was his next birthday party in a year. By then James would have dealt with this and it would be behind him. I remember being scared about what could happen, but confident thinking how impossibly unjust it would be for this not to work out.
Well, that birthday has arrived and James is gone. I miss the guy. He was one of those big personalities who add a lot to life. The fact that it would have been his 40th birthday really emphasizes what I’ve felt since he died. This was a bad, unfair, tragic deal and James really got screwed. But life can be like that.
Oh well. Happy Birthday, James. You are truly missed.

Missing James: One Month In

2008-11-26T12:08:00.000-08:00

This morning I was crossing 39th and a woman in a car slowed down and shouted, “Hey, Bill. Sorry about James.” I heard it in Starbucks a few days ago, and from a cashier at Zupan’s last Friday. In fact, I stopped at Zupan’s after turning in the last of the cable access shows – we were obligated through December. The next few weeks of the Born to Slack show are frankly, kind of lame. They’re just some standard reruns of other subjects like the protest march, etc…James isn’t even in them. This past week was the last official rerun with him in it – a vintage show from 2004.
I watched it again last night and it was all there: James’ spirit, humor, and charisma. Of course, all the references were already dated - it’s so weird to think about him in the past tense. I’ve gone through lots of different stages with this, as I'm sure you all have. One day for a little while I thought about breaking stuff up with a bat. That was the anger stage. Mainly I’m just worn down from trying to process this.
However, every now and then, I feel the joy of life. My wife will say something funny or the sun will hit just right. It is a beautiful predicament we’re in being alive. James died on October 27th. Tomorrow is November 27th, 2008, Thanksgiving. I miss the guy. It’s been a month and I still can’t believe he’s gone. But that is what we’ve got.

James Shibley: 3-26-69 to 10-27-08

2008-10-27T20:42:00.000-07:00

I knew things weren't going all that great. James was weaker than I remembered, almost inaudible on the phone. Still, this was how things could go in the normal course of firing up a new immune system. The big danger was that something lethal would come along and attack him during this long dangerous stretch. We regret to inform you that this is exactly what happened. James was attacked by a fungus, and went back to OHSU where his prognosis was described to me as grim. I last saw him Friday. He was in terrible shape by then, yet whispered to me, "How's it going?" So his last words to me anyway were an attempt to be funny. This encapsulated the courage and toughness James has displayed throughout. The idea of him suffering like he was for very much longer was unbearable to me. We held out hope to the end for that miracle comeback, but it was not to be.

When he died this morning, I felt quite a bit of relief that his suffering was over. As the day wore on, the sadness welled up. I've lost a great friend here and the idea that the James Shibley Era is over in my life and in the lives of so many others, is just too harsh. He was a great person and very, very funny. I just hope it won't be long before the images of these last few days fade and we remember him in good health, full of life and humor: The irrepressible, irreplaceable James Shibley. ---Bill McDonald

The Latest News on James

2008-07-23T12:19:00.000-07:00

Hello Everyone,

It’s been awhile since we have written for the blog. Our close friend Bill has been nice enough to keep things going over the past two months. We realized today just how long it’s been and thought a note to you all was in order.

James was released from his second hospital stay on Thursday, July 10th, in time to go to our friends’ wedding the next day. He was in the hospital for 27 days this go-around. His official diagnosis for treatment while in the hospital was Graft vs. Host Disease (GVHD). This is when the new donor immune system doesn’t recognize parts of James’ body so assumes it is something bad and attacks it. In general, GVHD attacks the skin (a rash), the digestive system (think REALLY BAD stomach flu), the liver, and the eyes.

James’ GVHD manifested in a skin rash and problems with his digestive tract. Because he wasn’t absorbing any food, he needed to be put on IV supplements. He was without important proteins for awhile, which led to CRAZY water retention (James gained 40-50 lbs in water weight in 1 week, he blew up like the Michelin man, poor guy). They increased his steroids to treat the GVHD, which led to medication induced diabetes, for which he is still being treated. Meanwhile, several viral and bacterial infections began to rear their heads. It was all a bit overwhelming for the first two weeks he was in hospital, but slowly James began to make progress on all fronts. He is eating a very restricted diet to give his system a chance to heal and taking lots of meds, but he is home and doing well.

Although the GVHD is alarming, there is a potential good side to it: when the rest of his body is being attacked by the donor immune system, if there was any remaining marrow of James’ that was not destroyed by the chemo, it is likely also being attacked. This means that if there were any remaining marrow cells with MDS in James’ bones, the new donor immune system likely destroyed these at the same time they were attacking his stomach and skin. The doctors like to say that “a little GVHD is good” specifically for this reason.

We just found out great news! On his last day in hospital James underwent his first bone marrow biopsy post-transplant. This is the most important post-transplant test. From it we found out that none of James’ old marrow cells were present, only donor cells. This is wonderful news as it tells us that engraftment has occurred and the transplant was, at this point, successful. James’ marrow will be tested several more times over the coming year to make sure that the level of donor cells remains high, but this is a great first step. We are still awaiting some additional tests from the biopsy to see if James’ chromosomes are also healthy. We will let everyone know when we find out the results.

On the financial side of things, we did receive some bad news when James was in the hospital: we have officially exceeded the allotted transplant funds according to our insurance plan. This means that much of James’ second hospital stay and subsequent procedures will be paid out of pocket by us. We will be joining a new health plan soon, but we suspect that we will owe between $20-$75K, depending on what we can negotiate with the hospital.

We will be having some fundraising events in the next few months to help defray these costs and will keep you posted regarding when and where these will be occurring.

Thanks for all of your support and encouragement.

Love,
James and Stacey

July, 2008: Two Months After the Transplant

2008-07-03T11:21:00.000-07:00

Okay, here's the first James Shibley update in a while: When the medical people said this would take a year, many of us - including James - figured that would be front-loaded to the main event, the transplant itself. When James went home from the hospital afterwards, things were looking great. James was playing with the kid, and going for long walks. In short, for a few brief shining weeks this all seemed to be drifting into the past.

However, there is a reason doctors go to med school - it's to learn more about medicine than the rest of us, and it turns out they were right: This will take a year.

Several weeks ago, James went back into the hospital and it looks like his stay this time will be around a month. He mentioned possibly going home by the early middle of July. I don't think he is in any unexpected danger for this procedure - he just needs to be given medicine intravenously and he can't do that as an outpatient. Obviously, it's a huge challenge emotionally to do this all again - for all of us but especially for him and Stacey.

The way I see this is that we were surprised and shocked back in December, 2007, at the news and scope of the initial problem. For months, that never really had a chance to dissipate. I'm grateful for the weeks when James returned home and life seemed almost normal again. This stretch gave us a break to recover from the first go-around. Now that we're rested again, we should be less surprised at this setback and more used to the idea of this as part of life in 2008.

Yes, it sucks. I mean it really sucks. But it's supposed to suck so that's what it is doing. James has aced this procedure up until now. He was in the top of all possible responses. Hopefully, this is a temporary dip into a more typical reaction to an unbelievably complicated and invasive medical move.

So, onward. One other good thing is that the second month in the hospital is part of that year it is supposed to take for James to recover. So time is passing with the 3 most important words in all of life: To Be Continued. ---Bill McDonald

One Month Since the Transplant

2008-05-25T11:13:00.001-07:00

Okay, it's been a long arduous process but enough about the Democratic primaries - how's James doing? I noted this morning that it's been 16 days since he returned home. One month ago tomorrow the transplant happened. That's a lot of little healthy cells growing and dividing. James came up with a good line about the entire process: A crazy balance between help and harm. Or was it "A crazy balance between harm and help"? The point is there is still a lot of finessing going on. Good things have to happen but not too fast.
So nobody is declaring victory here yet but the anxiety level has dropped from 2,000 miles up to around 100 feet. I've even begun wondering about the emotional toll, not just on James but on Stacey, his family and his friends. At times like this, you tend to bury emotions just to get through the ordeal, especially if you were scared by it. That's what this was: Courage versus fear and to get our courage up, we definitely suppressed some scary thoughts. Now that things have brightened again considerably, I'm turning to healing the spirit. Or at least recognizing that there could be issues here.
I even have a new suggestion for universal healthcare. First, do you realize what an opportunity the government has to win over the People during these problems? I mean I used to be very critical of OHSU for South Waterfront, etc... but after this I'll never badmouth them again. I am now an OHSU fan.
The politicians should provide universal healthcare, not just for us, but for their own job security and popularity. This should be an area where the normal dog-eat-dog rules don't apply and we take care of each other: "Oh, you're sick. Relax and get better and don't worry about a thing financially. We've got you covered."
Not only should that be automatic, but it would be less expensive than the sicko system we have now. That's the crazy part.
So what's my new idea? After all of the medical expenses are covered, there should be free counseling. Nothing out of hand. Just a few sessions where anyone who experienced the fear we just experienced can talk to someone and get the information needed to help put this behind us. That would be good government in action. It's not enough to beat these problems, if we're emotionally dinged by them going forward. Not only would you have citizens grateful for how they were treated but they would be healthier mentally to go out and be productive again. It could pay for itself although they said that about Iraq, too. Oh well. Just a thought on a rainy morning in May, 2008. ---Bill McDonald

Homeward Bound

2008-05-09T12:51:00.000-07:00

According to our friend Troy Wagner in Florida, James called saying he was just getting ready to leave the hospital.---Bill McDonald
P.S. The record for release after this procedure is 12 days and James did it in 13, so that's cool.
Welcome Home, James!

James’ New Stem Cells have Engrafted!

2008-05-07T17:57:00.000-07:00

Hello Everyone,

The stem cells James received during his transplant have engrafted into his marrow and his body has begun to produce blood. This is wonderful news, the last of the major milestones as far as the transplant is concerned.

Once the body begins to produce cells it takes only a couple of days to produce enough blood to be at acceptable levels. Because of this, the doctors expect James to be discharged from the hospital this Friday or Saturday.

Overall James’ transplant and recovery have gone as well as possible. He experienced minimal side effects from the chemo, handled his low blood counts well, and has been able to keep active and nourished. It has by no means been a cake-walk, but he has moved through each stage like a trooper.

We hope you all are happy and healthy.

Love,
Stacey

Shibley Makes the Portland Tribune

2008-05-07T17:48:00.000-07:00

Newspaper columnist Phil Stanford included an item about the cable access show James has been a part of for 4-plus years. It's actually about a political candidate named Will Hobbs who's running for Congress against David Wu. Will took Shibley's place on the couch this week.

Phil Stanford writes:

Forget Barack Obama and Steve Novick. Biggest surprise of the political season has got to be Will Hobbs, the country rock guitarist turned Intel engineer who’s running for Congress in the district that includes west Portland and Beaverton. … Two weeks ago, probably no one besides fans of the popular ’70s band Wheatfield had ever heard of him. As of this week, he has the endorsement of both The Oregonian and Willamette Week, both of which picked him over incumbent David Wu. … One thing for sure, this guy’s no ordinary politician. Sunday evening he’ll be appearing on my pal Bill McDonald’s cable-access show, “Born to Slack,” raising money for McDonald’s co-host James Shibley, who just underwent a stem cell transplant. Who says good guys have to finish last?

Transplant Completed!

2008-04-26T19:51:00.000-07:00

Hi Everyone.

James received his stem cell transplant early this morning, April 26th. The process was basically a blood transfusion except that rather than regular red blood cells it was rich with stem cells. The transplant began at 12:45am and took almost 5 hours. James experienced a few side effects, about 2 hours of intense chills and fever towards the end of the process. However, soon after he finished receiving the cells these went away.

Crystal and Kyle were here for the first part of the transplant and we had a nice celebration. As his doctor and nurses pointed out, April 26th is now James’ second birthday. James ate some Hostess cakes and we all had a toast with sparkling cider once the transplant began.

So far, James is doing well. He hasn't slept much for the past 2-3 nights so he is groggy and tired. His blood counts are continuing to drop, and should bottom out in the next few days so we are expecting that his energy will steadily go down during this time. The side effects from the chemotherapy are beginning to rear their ugly head as well so we know we are soon entering the most difficult phase of the transplant.

Despite all of this, spirits are high. We know things will go well and that James will come out of this strong and healthy.

Thanks everyone for your encouraging notes on the blog. Each time we log on there are new things for James to read.

Take care of yourselves.

Love,
Stacey

"It Went Well"

2008-04-26T17:42:00.000-07:00

Stacey emailed me that the procedure went well. She's going to send me a blog post later but I just wanted to pass that on.
So many complete strangers around the world worked on this from the anonymous donor in Europe to the airline pilots, doctors, nurses, and everyone else. At least we can thank the ones here in Portland but there are a lot of people involved with this who we'll never even know. That's inspirational - humanity at its best. And the suspenseful part wondering if these people would come through, is now done. They delivered.
The procedure took from 12:45a.m. to 5a.m., but the cells that James needs to survive are now in his body, and though the danger is far from over, that's a giant step forward in this entire ordeal.

We are in the hospital!

2008-04-21T17:22:00.000-07:00

Hello everyone! James checked into the hospital on Wednesday, April 16th to begin the transplant process. Getting admitted took some time, but by late afternoon we were settled into the room and unpacking. The room has two beds and James is the only patient, so Stacey is able to stay with him through the whole process. Crystal had several pictures of Robert blown up and we have hung them up all around the room, making things feel a bit more homey.

Robert’s first birthday was on the 16th. We had a party for him on April 15th so that Daddy and Robert could celebrate together. Lots of friends showed up and we had a great time. Robert ate his cake using a fork (he was very excited about being allowed to use the same utensils as the rest of us), and showed a fair amount of interest in unwrapping presents, although he didn’t make through all of them that night. Everyone had a great time.

James has finished four days of initial chemotherapy and has begun a more intense form of chemotherapy today, April 21. He will be on this chemo for two days and then have two days off of all chemo prior to his transplant. His transplant is scheduled for April 25th, sometime in the evening. They will be harvesting from the donor in the morning, flying it in to OHSU, and then the stem cells will undergo some tests prior to transplant.

In medical terms the days prior to transplant are counted down as negative days, days after the transplant are counted up as positive days and transplant day is “Day 0”. Today is day -4, (four days prior to transplant). They say that days +4 thru +14 (4-14 days after transplant) are the most difficult and dangerous. James’ counts will be very low during this time and we will be waiting for the new stem cells to engraft into the marrow and begin to create new blood. This will also be the time that the negative side-effects from the chemotherapy will be most acute. In addition, serious forms of Graft vs. Host Disease (GVHD) can begin to occur. Please send James your love and positive thoughts during these days to help him through the tough time. More comments on the blog will be a great way of letting him know you are thinking about him.

We will post a new entry when the new stem cells have begun to engraft so that everyone knows when James has jumped over the first hurdle successfully. Thank you everyone for you support and love during the last few months.

Love,
James and Stacey

Robert's First Birthday Part One

2008-04-21T17:06:00.001-07:00

Robert Was a Perfect Gentleman

Although Some of the Guests Got Rowdy

Warming to the Occasion

What It Is Really All About - The Cake

Robert's First Birthday Part Two

2008-04-21T16:50:00.000-07:00

Getting Into It

Charming the Room

James with Friends

The Family Portrait

Happy 39th Birthday, James!

2008-03-26T12:25:00.000-07:00

Today is James’ birthday. Robert and I woke him up this morning by singing him “Happy Birthday” and smothering him with kisses.
James has been feeling good these past two weeks. His energy is still a bit low, but no nausea or stomach problems to speak of. He is feeling so good, in fact, that we are going out to dinner tonight with a few friends to celebrate his birthday.
We wanted to give you all an update on the status of James’ transplant.
We have received a tentative schedule from the doctor, as follows:
This week: James finishes his last round of chemotherapy
April 28th: James begins his hospital stay, undergoing intense chemotherapy and radiation
May 5th: James receives stem cell transplant
May 12th: James’ new bone marrow stem cells begin to reproduce healthy blood
May 26th-June 10th: James is released from hospital and begins home care
June-August: James’ body and new immune system continue to get to know each other, close monitoring required
September: If all has gone well, at this time James will begin to steadily improve and require less stringent medical attention.

These dates could be pushed out a week, depending on the doctor’s assessment of James’ health over the next few weeks.

An interesting note: we found out recently that the donor is a 41 year-old WOMAN! James will truly be in touch with his feminine side once he receives the transplant. ☺ His blood type will change from O+ to A+ as well. We are constantly amazed at the transplant process!

We will post a new entry when James enters the hospital so that everyone knows when the process has begun.

James has really enjoyed reading the notes you all have left in the comments section of this blog. Thanks for everyone’s support and encouragement.

Love,
Stacey and Robert

We Found a Donor!!

2008-02-27T12:30:00.001-08:00

Wonderful news to report: we found a donor for James. The donor is a 12/12 match, what they call in the health care industry a “perfect match”. The donor is somewhere in Europe, 41 years old and has donated before. All good news in our book. Maybe James can apply to be part of the European Union post-transplant! Hah!. Ex-pat status, here we come. ☺
As is expected we are in high spirits. It is amazing that there is some stranger out there that will be helping James in such a huge way. If you haven’t already, please do what you can to become a potential donor and get into the database. We cannot express how much joy and relief the donor has brought into our life.
The hospital is now finishing the last bit paperwork with our insurance company and getting all of James’ medical records from his hematologist. We should meet with the transplant specialist next week to develop a schedule for the transplant process. We will update the blog then so that everyone knows when James will be in the hospital.
Thank you everyone!

Join James in his Fight against MDS

2008-02-25T16:07:00.002-08:00

James with Stacey and Robert, Christmas Day, 2007

James Shibley is a 38 year-old, caring husband to wife Stacey, and a stay-at-home-father to 10 month old, Robert. In addition to caring for Robert, James worked part-time to help make ends meet. In December, 2007, James was diagnosed with MDS (myelodysplastic syndrome) – a precursor to acute leukemia. The only way to survive the disease is a successful bone marrow transplant. James has begun chemotherapy sessions and had a blood transfusion to try and keep his blood counts as high as possible while a donor is being located. Once a donor is found, the transplant itself requires a 4 – 6 week hospital stay. In addition, the first 3 – 6 months that James is at home after the transplant he will require intensive care.
The expenses for treating James, not to mention the emotional toll on the family, are significant. James can no longer work or care for their little boy. The family has needed to hire a nanny, pay out-of-pocket medical costs, and make their monthly insurance payments through COBRA as James’ job was the provider of the family’s health insurance.
James and his family have moved in with extended family to help defray these costs and minimize the financial burdens. They are quickly realizing, however, that their monthly responsibilities are more than they can afford. The hospital recently informed James and Stacey that their insurance will not cover the full cost for James’ transplant and post-transplant care. The family needs to raise at least $50,000 to cover the first year’s costs that are not covered by his insurance company.
Through these last few months James and his family have begun to realize how large their community of support is and have been humbled and touched by the outpouring of love and generosity they have received. They want to thank everyone for their support and encouraging thoughts.
If you would like to help James in his fight against MDS, you can send donations to the following address:

James Shibley
Stacey Rutland
625 SW Alder St. #103
Portland, OR 97205

For your contributions to be tax-deductible, please fill out the attached PDF and send checks to:

National Transplant Assistance Fund (NTAF)
150 N. Radnor Chester Road, Suite F-120
Radnor, PA 19087

We will send monthly updates to let everyone know James’ health status and where we are in our fundraising campaign.

Thank you,
The Shibley Family

Stacey's Post

2008-02-12T21:36:00.000-08:00

Many of you have asked for additional information about James’condition and how you can help. Below is a short explanation of his disease and treatment as well as resources you can use to find out more.

The Disease
James has been diagnosed with Myelodysplastic Syndrome (MDS) or Myelodysplasia, a blood disorder in which one or more of his bone marrow stem cells have mutated and no longer produce healthy, normal blood cells (red, white and platelets). James is in the higher risk level, phase of the disease. If untreated, it will develop into acute leukemia.

The Treatment
James is currently being treated with chemotherapy, specifically Vidaza, while looking for a bone marrow donor match. Vidaza is designed to stave off the disease’s progression into leukemia, a potential short term solution that has been effective for many patients. We are keeping our fingers crossed.

James has been feeling rather poorly, extremely tired and fatigued. His white blood counts have increased, but his red and platelet counts have begun to diminish, normal for this stage of the chemo. They are low enough that his doctor asked that he get a blood transfusion. This last Saturday James received 2 pints of blood. His counts are up and he is feeling better. He will begin his next round of chemo on Wednesday, Feb. 13th. It is normal for his counts to go down before they begin to go back up.

Meanwhile, we have begun the transplant process, which means looking for a donor. A transplant is the only cure for the disease, although it is not a guaranteed one. Because James is young and otherwise healthy, he is seen as having a high likelihood of success with the transplant.

Finding a Donor: Where We Are in the Process
We have currently found 6 potential matches for James, through both national and international bone marrow donor databases. A perfect match is 12/12 markers. There are two donors who, through preliminary testing, match 8/12 markers. Our doctors are currently doing further testing of these two donors to see if they are matches along the remaining 4 markers.

The other four potential donor matches were initially tested along 6 markers, and match all six. We will need to do further testing to find out if they match James on the remaining 6 markers.

Testing is quite expensive, and our insurance will not cover testing all six potential donors, so we are starting with the first two, hoping that one of them will be a match. If not, we will begin further testing of the other four potential donors next week. We will find out the results of at least one of the initial potential donors by Feb. 19th or 20th. We will keep you posted on the results.

Becoming a Donor
Many of you have expressed an interest in registering in the bone marrow program to be a donor. There are a couple of ways to go about this:
1. Go to the National Marrow Donor Program website and order a “home kit” with which you can take a swab of your cheek and send the sample in: http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html
2. Contact your local Red Cross chapter to find out the nearest donation site.

There are a few things that we have found in our research and discussions with doctors about being a bone marrow donor that we want to share with you:
• The first is that the donation process is usually fairly simple and relatively painless. (For all of you Grey’s Anatomy watchers ☺: one of our doctors cursed the tv hospital dramas for making it appear that donation is a long and painful process.) For more information on the process go to: http://www.mayoclinic.com/health/bone-marrow/CA00047
• Although all donors are desired, non-Caucasian donors are especially needed. People from a racially mixed background even more so. James’ condition is practically a death sentence to most people of color. If you feel comfortable, please encourage any non-Caucasian people you know to become a donor.

Thanks for everyone’s support so far. We are feeling strong and positive. We know James’ can beat this.

Here's the First Post

2008-02-12T10:08:00.000-08:00

Hi, I'm Bill McDonald, the co-host of Born to Slack, a cable access show in Portland, Oregon. The show is based on a suggestion by James Shibley and is just closing in on its 200th episode.
Unfortunately, James has come down with a serious health problem, but there is hope and we're going to fight for his survival.
More details will follow but this blog is to help do that so it is now up and running.

Oh yeah, the posts will just be signed by the show. Usually that's just the blogger's name but we're going to have more than one person posting.

If you'd like to leave a comment, feel free. I might read some on the show.

The calls I have with James are still full of laughs despite the gravity of his situation. We're also going to try and continue to have fun here. Why not?

That's it for now.