Tuesday, June 9, 2009

Tributes to Steve

Many people have expressed an interest in making a contribution on behalf of Steve. We have added a few links on the right side of his blog to support the organizations that supported us.

Steve's stem cell transplant (his chance of a cure) was possible through the 9/10 match he found on the Bone Marrow registry. Many people still don't find a match, so it is critical that people of ages 18-60 become registered.

The Leukemia and Lymphoma Society is committed to fighting blood cancers. Through the LLS website we found information about MDS and AML when Steve was first diagnosed. They also provided us financial assistance with medication costs and parking fees. I spent hours reading the discussion boards where other patients and caregivers talked about treatments and shared their questions.

Steve's friend Brian Gist is participating in the LLS Team in Training program. Sponsoring his fundraising is another way you can donate to the Leukemia and Lymphoma Society.

Saturday, June 6, 2009

A Celebration of Steve's Life

We really appreciate all of the warmth and love that all of you have shown. Thank you so much. It is clear that Steve was well-loved by so many people.

Steve's Celebration of Life will be held on Saturday, June 13 from 3:00-7:00 pm at the Center for Urban Horticulture (NHS Hall). The address is 3501 NE 41st Street, Seattle, WA 98105. Directions can be found here and a map of the facilities is here.

A short service will begin at about 3:00, followed by a reception. Food and refreshments will be provided. All those who knew or have been touched by Steve are welcome to come and celebrate his life.

**Please note that the University of Washington will be holding its graduation ceremony on the same day and we expect that traffic in the area will be pretty congested. So you may want to plan accordingly and leave a bit early.

As you all know, Steve was a happy, upbeat guy who saw the positive side of everything. In keeping with Steve's wishes, we would like this service to be a positive reflection on Steve's life and a festive event. Please dress accordingly (i.e., no need to wear black mourning clothes).

There will be a memory book where you can share your memories of Steve and any other pictures or mementos.

We look forward to seeing you there.

Friday, June 5, 2009

Steve Rider: March 6, 1974 - June 5, 2009

Dear friends and family,

This is Steve's sister. We're so sad to share with you all that Steve passed away early this morning at about 2:30 am. As you know, he developed a high fever yesterday afternoon and was admitted to the hospital at 7pm. His heart rate was very high and his oxygen levels were low. He was moved to the intensive care unit where he was sedated and intubated. His fever stayed high and they continued to monitor him. The doctors confirmed that he had pneumonia. Regardless of everything the doctors tried to do, he was unable to fight the infection and his body quickly began to fail. We believe he died painlessly. As you can imagine, we are completely devastated. We had no time to prepare or even to say goodbye. Steve was also not prepared. Although Steve had been battling leukemia for the past year, he seemed to be improving until about a week ago. This recent downturn in his health and the sudden onset of infection last night were such a shock. We miss him so much already. Johanna is surrounded today by lots of love from family and friends.

He was diagnosed one year ago today.

We are planning a Life Celebration ceremony and will share the details with everyone as soon as we know.

Thank you for all of your love and support.

Thursday, June 4, 2009

double cross your fingers for steve

This is johanna. Steve is in the ICU at swedish with a possible pneumonia. He wasn't feeling well this afternoon but didn't get a fever until after 5. His doctor admitted him and now he is intubated so they can keep his oxygen up.
They expect him to be sedated for a few days.
This is certainly what we hoped to avoid. Please keep Steve in your thoughts with positive energy. He knows he needs to fight this. We'll update when we know more.

Wednesday, June 3, 2009

Day +127 - We have a plan: re-transplant

Short update: the conference reviewed my case today and recommended a re-transplant using the same donor. This would happen ASAP, assuming the donor is still willing. The conditioning regimen would include chemotherapy and radiation this time, not just chemotherapy, so that's a little scary since radiation is pretty tough stuff. They called to see if we wanted to proceed, and I gave the OK. They're in the process of contacting the donor now.

If the counts recover by themselves before the transplant, we'll cancel it. But it seems less and less likely. So the next step is that I expect to be re-admitted back into the SCCA program and we'll start with a consultation to go over the plan and to give us a chance to ask questions, get all the details, and understand how they came to their consensus. In the meantime, I'll be on daily blood draws and transfusions as needed to keep me going until the transplant, unless the counts recover by themselves. But Johanna and I are happy that there is a solid plan that the professionals are all on board with. Even my local oncologist, who worries incessantly about me, agrees that it's a good plan.

I'm sitting in the infusion room with Johanna and my mom getting platelets right now, and am amped up on a double tall iced mocha with whip cream, so I'm feeling pretty good. After this we may head over to West Seattle for crinkle cookies at Alki Bakery.

Day +127 - No news yet, some graphs

On the left is my new PICC line, now in 2 flavors! If you remember, the last PICC catheter I had back in November only had one lumen (catheter) and the nurses would get so annoyed using it since they would have to switch back and forth between drawing blood and infusing medications. With a dual-lumen PICC, they can use both lines simultaneously, in either direction.

Today is the day where my case will be presented in front of the transplant teams at the Hutch. Hopefully they'll come to a solid consensus as to the plan of action. Luckily there are some seriously smart folks on the team, some of the same doctors that oversaw the very first transplant at the Hutch in the 70s. And the woman presenting my case is someone who cares a lot for me and who was my discharge doctor. She's an old hat too, and during one clinic visit we geeked out about MacBooks, old computers and punch cards, and the latest technology trends. So hopefully the right people are looking out for me.

Right now my counts are dropping quickly each day, even more so than last year when this all started. My platelets are already down to 15 even though I had a platelet transfusion last Friday, so I'm scheduled for another one today. I'm good at practicing patience, and am still holding out that this is just a temporary glitch and that it resolves itself. If the doctors agree that that's a likely scenario and recommend it, I'm more than happy to just be careful and wait it out. But it could be an entirely new form of disease such as aplastic anemia caused by the chemotherapy used to get me where I am today. The unknowns at this point are the most frustrating, since it's hard to plan or think about things a week or two ahead. But either way, I'm doing a pretty good job keeping my spirits up since for the most part I feel fine and can function normally, albeit very carefully without my immune system. It's like I'm a shiny new car with a rebuilt engine, but driving around with busted air bags and a leaky oil line. UPDATE: Johanna read this and thinks that I'm like a shiny new car with a rebuilt engine that just blew a head gasket.

Yesterday I went in for my daily Neupogen shot, so now I have several bruises from the shots all over my upper arms. Today I'll go in for another one. These will go on indefinitely until we figure out a plan. But Johanna has been able to take time off work so we've been enjoying the nice weather and doing fun stuff around town, more than we normally would, like browse around REI for summer clothes, get coffee, meet for lunch together, drive around the city, etc. It doesn't take much to entertain me so I haven't been *totally* in the doldrums.

My friends say that my new girl blood in me is just acting moody. Ha! Maybe it's time to buy some fancier soap and start wearing cologne :)

For those of you that want to see what's been keeping me up at night, when I have a harder time getting my spirits back up, here are the latest charts of my blood counts. The purple bar is when I had conditioning chemotherapy for the transplant, way back in January.

Monday, June 1, 2009

Day +125 - PICC line, chimerism results, counts still low

Today I had another PICC line central catheter put in to handle the onslaught of daily blood draws and possible transfusions over the next several weeks. I don't regret pulling the Hickman line a few weeks ago, since a few weeks ago everything was going great and there wasn't any reason to keep it.

Today's blood draw are showing that the counts continued to drop over the weekend, even with the Neupogen shots I'm getting. They say it could take a week to see any response to the shots, but the docs are skeptical and give it a 10% chance. My bets were on the steroids, and I'm frustrated that they didn't have any affect since that seems to have been the only variable that really changed between when things were fine and now. The good news is that the steroids have completely wiped out my skin GVHD. They have also given me a ton of energy and are probably responsible for me being in as good of a mood that I'm in, given all this. I actually enjoyed myself this weekend! Oh, and my chimerism results from Friday show that 100% of my granulocytes (bacteria-fighting cells) are still donor cells and 51% of my lymphocytes are still donor cells. This is good, since it means my donor stem cells are still camped out in there and that they weren't wiped out by my old immune system. That would have been a graft failure. Right now they're calling my condition a graft dysfunction. This is sort of good news, since it means there could be an alternative to curing the problem that doesn't involve wiping it all out again with another transplant and starting over.

My oncologist consulted with the transplant team at the Hutch today, who will be presenting my case at their weekly conference to figure out how to proceed from here. In addition to options such as hoping the cells wil recover on their own, there has been talk of doing another transplant with cord blood, re-transplanting with the same donor, or treating this as an entirely new disease like Aplastic Anemia. So after Wednesday we should have a better idea of a plan going forward, unless the counts start suddenly going up by themselves in the next few days. Luckily I feel fine physically and Johanna and I did a bunch of fun stuff this weekend, though our spirits are down a bit especially each time after leaving the doctor's office. I don't think we're overly *worried* about the future, since the doctors are smart and we've gone through tough stuff before. It's just dealing with the drama and the realization that it looks like we're up for another tough fight and all the gearing up required to go through with it. But you gotta just take things one day at a time. I'm not in the hospital or anything and can still function like a normal person day to day, so I can't ask for too much more than that at this point.