Kev's Post

Live with Courage

2008-11-04T21:32:00.049-06:00

Thank you to everyone that attended and contributed to Kev’s celebration of life – it was wonderful. Thanks again to everyone for all their help, love & support these last couple months. It has truly made our lives so much easier to bear. We know death is a natural part of life, but it makes it no easier to accept. Kev lived life to the fullest – be it at work or play and he lives on in the memories of all he touched. For Kev and the other 560,000 Americans who will die from cancer this year - Live with a purpose, enthusiasm and courage.

Ken Leiden (college & climbing buddy of Kev) wrote of a great summary Kev's memorial for those unable to attend:

On Thu, Oct 30, about 200 folks from all phases of Kevin’s life came together at Lakewood Yacht Club in Seabrook, Texas to celebrate Kevin. And it really was a celebration – the atmosphere in the yacht club ballroom was more akin to a wedding reception than a memorial service. Shelly and I arrived in Houston around 2 pm and made it to the yacht club by 4:30 pm. In the lobby area, there was a large (I’m talking 5 ft wide) photo of Kevin with the NASA and Boeing crew as astronaut Scott Parazynski presented Kevin with a special award for saving a solar array on the International Space Station. The celebration started at 5 pm, but there were already lots of people there including Kevin’s parents Frank and Claudette, his two brothers Darrell and Tom, his sisters Pam and Sue, and Deneen’s sisters Christina and Michelle and her brother Cale, and Phil Girard. More people began arriving and there were lots of introductions. By far the largest contingent was the NASA/Boeing crowd. They were pretty easy to pick out since they look exactly like you’d expect NASA engineers to look. Don, Tad, Sam, and Mike showed up from their “no time to spare” 4 pm flight.

A beautiful buffet dinner was served with folks sitting in large round tables of 10. After dinner, Darrell, as the master of ceremony, got the events of the evening underway. First off was musi by student’s from the Clear Lake High Schoo's Wind Ensemble band. This was followed by a presentation by members of the youth sailing team (Chase, Eric & Madeline), where a memorial brick, to be laid into the ballroom walkway, was presented. Next, Darrell said it was time for the slideshow, which Deneen and I had spent a lot of time putting together over the previous week. Thanks to contributions from Sam, Don, and Kirk, we had 300 slides. Of course, although I had fully tested everything prior to this, the projector put itself in some weird mode and I couldn’t get it to wake up. With the help of many NASA engineers, we ended up following NASA protocol and doing a full power-down. In the mean time, Darrell suggested we move on to more music. This time it was a small band, friends of Kevin’s, Carter & Paul and Kala (Kelden & Nick's music teacher) who played "Southern Cross", "The Prayer", "Knockin on Heavens Door" (custom lyrics by Carter) and "I hope You Dance". One of the funnier quotes of the evening came from Nick and Kelden’s music teacher when she was recounting how Nick (in 2nd grade) would cry when she was correcting his behavior. She consulted with a colleague about Nick’s crying and the colleague said that “you never know what kind of family these children come from.”

When the band was finished, we started a 20 min slideshow, which had photos from Kevin’s 45 years of adventures in life. There was a heavy climbing bias mainly because Deneen & Kev lost a bunch of great photos to Hurricane Ike, but the NASA/Boeing crew got to see a side of Kev that they really didn’t know much about. The slideshow was accompanied by a music playlist that Shelly and I put together Wed night based on a tape Kevin made for me in 1988 when Shelly and I started our round-the-world trip. Amazingly, I found this tape in my Explorer earlier in the week.

After the slideshow, a list of speakers was lined up that included Phil, Sam, myself (Ken), and a handful of folks from NASA/Boeing - Fern, Bob, Kauser, Mario, David & Chris. Phil’s tribute was the highlight for me – he really got to the essence of Kevin. A lot of people only saw one or two facets of Kev’s life, but I think Phil saw the whole package as much as anyone (Deneen too of course). I then gave a short recount of the “infinite tension” story in which we hung off the Dewey bridge near Moab, Utah in our climbing harnesses and Swill thought the steel cable was going to break because of infinite tension. Kev set him straight though. Sam’s tribute to Kevin focused on the traits that Kev exemplified on the various Yosemite multi-day wall climbs including his easy going and never complaining attitude. The Boeing/NASA folks talked about how Kev was a mentor to many and how he just got things done. One guy talked about how did all this modeling and simulation to prove a design and Kev told him “it just didn’t look right”. They also talked about some of his high-profile successes such as the solar array. Lots of funny quotes that I have already forgotten so if you all remember please respond back and share with everyone. The chief engineer for the ISS gave a motivating tribute about why the work that Kevin did was so important. He then presented to Deneen the flag that flew over NASA the day after Kevin died. Also, I forgot to mention that Deneen’s sister Michelle snuck in between a couple of the Boeing/NASA folks, speaking with raw emotion about her love for Kevin, doing a great job of getting the tears to flow in the crowd. Kevin’s father, who had not planned on talking, was so moved by these toasts and tributes, that he got up and shared some of his own stories. He also said that he never expected to learn so much from one of his own children.

A while after the formal part of the celebration had ended, things began to wind down in the ballroom. A smaller crowed that included close friends of Kev & Deneen and out of town guests went over to Deneen’s for dessert. I had a chance to talk with the Boeing/NASA crowd and this indeed is a great bunch of people. The things they have done for Kev & Deneen during the past year with regard to both Kevin’s health (e.g., building the wheel-chair ramp, meals for the family) and cleaning up their house after Hurricane Ike devastation are truly the most generous and giving actions I have ever personally been connected to.

Friday was a nice kick-back day to hang out with old friends. Deneen, Phil, Mike, Sam, and I spent virtually most of the day talking, catching up, telling stories, etc. We spent a couple of hours on the dock at the old house on Galveston Bay enjoying the breeze, sunshine, and Shiner Bock. Dave, Kev & Deneen’s good friend from Boeing, joined us after work. He was the one responsible for organizing the Todville house clean-up after Ike. More conversation late into the evening.

Sat we were a little more motivated, helping build a platform for an antique bed that Deneen had from her great-grandparents. We told Deneen that in honor of Kevin, the load limit of the bed was exactly one person. We had a fun Japanese dinner Sat night with a large group that included Kev’s parents. I forced everyone to watch the Texas-Texas Tech football game and then we talked into the wee hrs of the morning. These days & nights were filled with great memories and I really felt like Kevin’s spirit was with us and we were doing exactly what he wanted us to be doing to honor him. Sunday we had a nice relaxing breakfast at a local eatery. We spent a good deal of Sunday making our respective cases why Kelden should attend college in CO vs CA. Mike, Sam, and I then left for the airport.

From the Memorial Service, below are some of memories/tributes/stories folks had to share about Kev:

Carter's lyrics to "Knockin" on Heaven's Door"-

Knocking on Kevin’s Door

G D Am7

G D C

Husband, Son and Dad

Passed on way too soon

Left us here on earth

Reaching for the moon

Knock, knock, knockin' on heaven's door

Those that knew were blessed to be

Friend, lover and family

A life well lived, it surely was

An inspiration and a legacy

Knock, knock, knockin' on heaven's door

We’re all here and soon we’ll go

Of all among us, only Kevin knows

Passing on to eternity

To our Father, the glory be

Knock, knock, knockin' on heaven's door

Chase Shaw (LYC youth sailor) -

Hello. My name is Chase Shaw and I am a current Jr. Flag Officer here at Lakewood Yacht Club. I am here on behalf of the other Jr. Flag and the Lakewood Seahorses to speak about the Pehr family and their enormous contributions to youth sailing.

Kelden and Nick have been active participants in the youth sailing program for many years and have competed at both the state and national level. Kelden is our current Jr. Flag Vice Commodore and Nick is our current Jr. Flag Rear Commodore and both hold these offices with great honor. Kelden and Nick are always there to support the other sailors especially our younger sailors.

Ms. Pehr is an essential part of the youth sailing program here at Lakewood. She has been co-chairman of the Seahorse Camp the last two years, provided the scoring at multiple regattas, and is currently on the Seahorse Youth Committee where she is providing great guidance for the future of our program. Ms. Pehr is always there and always willing to help; even when Mr. Pehr was ill, she actively participated when she could.

Mr. Pehr will be remembered by all of us for his great love of the outdoors, knowledge, and enthusiasm. The Lakewood sailing program is blessed to have had him share his many talents with us and for passing them on to his kids. Mr. Pehr was always there with his van and tools when work needed to be done. Mr. Pehr provided both onshore and on the water regatta support, was the photographer for many events, and was a presence at many of our races. Nick, always ready with tools and knowledge, showed us that he would carry on his Dad's tradition and was the "fix it guy" for boats during camp and the summer program. Kelden inherited her Dad's talents as well and was our camp "techie" and photographer this summer setting up our first ever Seahorse Camp Blog . But Mr. Pehr's greatest joy was watching his children, all his children sail. Even this past summer, when he was very ill, Ms. Pehr was calling in race results to him so that he could cheer his kids on from his bed. I and the other Jr. Flag, Madeline McAndrew, Eric Goethe, and Brad Shaw would like to dedicate a brick in memory of Mr. Kevin Pehr and his support of youth sailing. This brick will be a reminder to all of Mr. Pehr's continual love of sailing. Thank you

Phil Girard (college friend) -

"I am neither eloquent or wise, But I would like to remember Kevin to you.

Kevin and I met a score and seven years ago, as freshman at CU in Boulder, Colorado. He was my friend.

Kevin was a man of action: skier, rock climber, mechanic, carpenter, sailor, rover and ranger.

He was a man of letters: philosopher, inventor, designer, musician and songwriter.

He was a family man. Kevin often told me his relationship with Deneen was lopsided - and that the benefit was entirely his own. He admired Deneen tremendously. And on a few occasions he shared with me how moving it was for him to see Kelden and Nick grow up.

I enjoyed many happy times with Kevin through the years. But, the happiest were those spent with him and his family.

Kevin enjoyed all these things: work, play and rest; loving and being loved.

And I believe that there is nothing better: than a man should rejoice in his own work. This is our only portion.

Even as Kevin lost the ability to do the things he loved, he never stopped living, never stopped enjoying life.

Because the sun also rises, the sun goeth down. But one thing, at least, remains: love.

Although my life has dimmed with his passing, it is still brighter for having known and loved him.

To Kevin then! A grateful, warm adieu.

We, with much-indebted tear, shall all remember you."

Fern Quinonez-

There are 3 types of people:

- Those who make it “happen”! - Those who “watch it happen”! & - Those who say “what happened”!

Kevin is one who “made it happen”… Through his personnel strength, solid character, his passion for the out doors & his love for Deneen, his family and friends.

When I first met Kevin it wasn’t at work… I’ve seen him on the docks at Seabrook Marina... Where his boat was dock… it was later that we both realized we worked at Boeing… in fact the same organization.

Many people don’t know this…

He was instrumental in the selection of my sail vessel, named “Bold Spirit”. It’s his passion, his “Bold Sprit” to help out, were ever he could. He provided me with sailing guidance, boating insight… whether we exchanged magazine or books that he recommended… to me, he’s a true blessing.

One Saturday afternoon… while sailing about ½ a mile from his back yard… I called him, just to say hello and if he could see us on the bay… He said, Oh yeah! Wait there, he hung up the phone… next thing I know, he’s aggressively canoeing toward my sail boat. With passion, the determination and a “Bold Spirit”. What’s this I thought… I’m being boat jacked… by pirate Kevin… in a canoe??? Anyway we rigged up a bridle for the canoe, went sailing for a couple of hours, enjoying his visit that afternoon… It was later as he was disembarking that I found out he didn’t tell anyone… just that the canoe was missing… I’m sure Deneen can tell the other half of that story… The fact is that’s Kevin’s “Bold Spirit”.

Kevin our colleague, our friend… seemed to have the gift of calmness; in most everything he did… an easy personal disposition, so likable… apparently that’s why we are all here!

Not much seemed to get him too excited… I recall several years ago we worked on a HOT project… we were tasked to design, manufacture and delivered a Multi-layer Insulation = MLI (A space rated blanket for a BMRRM = Bearing, Motor and Roll-Ring mechanism – a barrel looking canister for the Space Station). It was a 30 day project from start to finish…aggressive by all accounts, yet he kept his cool.

We worked long hours and extended work weeks… One early Saturday morning while still dark, I was driving North bound on Red Bluff (a three lane road, going one way)… I experienced a driver coming the opposite way on wrong side of the road… fortunately; I was on the center lane as we both passed each other at a high rate of speed… The fact is I was really shaken up… As I reached the Houston Product Support Center, Kevin had just arrived perhaps seconds / minutes prior to me… my heart was still pounding… It was then that I realized that Kevin was the vehicle way ahead of me (everyone remembers that old white van… It can haul anything including 15 oak drafting desks on top)… anyway apparently he too had just experience the same thing… Who would have know that… Since he was so calm… Not surprising! As in everything is all good.

Kevin, thank you for all your friendship & support, I know you’re smiling with upon us we’re celebrating your life and your “Bold Spirit”… God be with you.

Bob Clark (Boeing Technical fellow)-

Kevin Pehr, where do I begin? Well…I wish I would have got to known him better, I wish I could have shared some of his adventures with him, I wish he was still here…I miss him!

You hear people say someone is well rounded…Kevin was so rounded, I think he was a perfect sphere. Every time we got together to chat, I learned something else he did that amazed me.

Intuitive engineer, a family man, a sailor, tuff as nails, good friend, truly compassionate, a wood worker, a bargain hunter, a little quirky, truly unique and a role model.

Those of you that got to work with Kevin know what I mean about an intuitive engineer. And those of you that have worked with me know that I can get a little carried away with analysis. Kevin and I were working an issue with the airlock hatch. I had built one of my over the top complicated numerical model. I would show him the results, he would study them for a bit and then explain to me how they did not look right. Did not look right? How could they not be right? I built this cool solid model, I could animate the operation of the complicated mechanism…it was even in color. I would then review my model and sure enough…find something wrong.

Often Kev would stop by just to visit. I enjoyed his company so much that no matter how busy I was, I found time to talk to him. Often these stories involved his family and it was clear how much he cared and loved them all…and often they involved pets. Taking long family driving trips in a not so large vehicle with a very large dog. Hunting for lost pets long after the rest of the family gave up the hunt. One time during one of our visits he mentioned a pet problem that occurred the night before…he explained that the other day he walk up to his desk and his lunch bag was moving, we had been having a rodent problem at the office and the little guy had hopped in Kev’s lunch bag for a snack. Kevin quickly closed the sack and captured the little mouse. He took it home as a new pet, unfortunately the mouse did not care to be a pet and got loose in their house.

Did I mention tuff as nails. One time Kevin stopped by for one of his visits. I mentioned I had not seen him for awhile and asked if he was OK…he casually said that he had a few medical issues taken care of, including a new hip! He was gone no more than a week or two. I like the time he had a rib removed for a procedure and attempted to talk the surgeon into letting him keep the rib…he thought it would look cool on his mantel. A year or so ago I had to have double hernia surgery, Kevin stopped by to give me advice, we all know what a veteran he was. Later I found out he was going to have some kidney stones removed, finally something I could help him with, I’d been through this. I explained the pain…the agony…the uncomfortable feeling. He seemed prepared. A few days later he was back at work, he stopped by my desk and mentioned that it was really no big deal. That is when I realized just how much he had been through and how tuff he really was.

Bargain hunter…I loved his school district auction stories. Thinking he was buy one thing and then ending up with so much more. One time he saw an old oak teacher school desk. He thought the wood could be used to make some cool stuff. So he got it for about $20, if I remember right. Well it turned out that he did not get one desk, he got something like 20 of them. So he made several trips getting as many desk home as possible. He would stuff a couple inside his old ¾ ton van and tie a couple on top…I wish I could have seen that sight.

Adventurer…outdoorsman, skier, sailor, rock climber, the climbs Kevin accomplished are incredible. We often shared stories of things that went wrong, those painful experiences when you are suppose to be having fun. I remember him telling me about climbing in this really tight spot. It so narrow he could not turn his head. For some reason he bumped the front of his head, his natural reaction was to jerk his head back, he then bumped the back of his head, then jerking and bumping the front…you see what is happening, he was stuck in a do loop. I remember him acting the event out, it looked pretty funny. Earlier this spring I had a freak bike accident. I was about 20 miles from home on 517 when I suddenly heard a loud pop. I looked up to see the top half of a tree falling…on me! I turned sharply to avoid being hit by the base and ended up under the small branches…in the middle of 517. I was very lucky and ended up with mostly bruises and a fairly bad cut on my nose. After I stopped the bleeding and continued with my ride, one of the first things I thought of was that Kevin will love this story! I relayed it to Deneen and as I understand he enjoyed it thoroughly.

And lastly…Kevin is a role model. And it is not just because of the way he approached his health issues. Of course he did tackle them with superhuman strength and optimism that was second to none. But this was just one of his multiple layers. Some folks focus their energy at a single point…maybe a hobby or their carrier. Not Kevin. Kevin focused his life on life itself. He volunteered to help young folks build robots and sail boats. I think he participated in about every possible outdoor activity. He was an outstanding engineer. He was a true family man and a great friend. I can’t wait to see him again to share more fun stories.

Chris Hansen (NASA ISS Chief Engineer)

I have the great honor tonight of presenting Kevin’s family with a special memorial on behalf of the National Aeronautics and Space Administration. Many of you know me, but for those who don’t, my name is Chris Hansen and I’m the Chief Engineer for the International Space Station Program. I’ve had the pleasure of working with Kevin and Deneen since they came to Houston so it’s an honor for me to be here with their friends and family tonight. It’s also an honor for me to be able to represent NASA on this night where we’ve come together to celebrate Kevin’s life.

Before I make the presentation, I’d like to spend a few minutes putting some context to what NASA represents to those of us who are part of this family. Many of you here work for or with NASA, so you understand what I mean when I refer to the NASA “family.” There is something that ties all of us together in a very real and tangible way. We share an absolute, unbreakable passion for the exploration of space. That passion demands a lot from us, and our families. This business is very difficult. It often pulls us away from the ones we love. It’s dangerous. When we make mistakes, people die. When we do things well, people’s lives are still at risk. We’re held to an impossible standard of success by others, and we hold ourselves to an even higher standard. It’s stressful. It’s demanding. So why do we do this? We do this because we all share a belief that what we do is important! It is in human nature to explore, but how many of us truly have the opportunity to go somewhere no one has ever been before? That’s what we do. We are the lucky ones, but it requires a great sacrifice from all of us who participate, including our families. That shared goal brings us together in a way that is so powerful, we can accomplish the unimaginable. But only because we are a strong family. Again, why do we do this? Why is it important? I remember, as a new engineer, sitting in an auditorium one day listening to a group of NASA leaders talking about why what we do is so important, and I heard it put in a way that was very powerful to me personally. It went something like this:

In 1000 years from now, when historians are writing a history of the world, and our generation gets a single paragraph, what’s going to be in it? Do you think they’ll write about war in Iraq? Terrorism? Economic crises? Presidential politics? Those things are important, but I don’t think they’ll make that paragraph. What I think they’ll write about, is that our generation was the first to break the bonds of this Earth, and leave the planet for the first time. We are here together because we want to be what they write about 1000 years from now. That is worth the risks we take.

The public is aware of the very real risks our astronauts take. They are the visible symbols of both the risks and the rewards of our passionate pursuit. We hold parades for them when they return safely. We feel a great loss, as a society when they don’t. We remember their names.

Ed White Gus Grissom Roger Chaffee Dick Scobee Michael Smith Judith Resnik Ron Mcnair Christa McAuliffe Ellison Onizuka Gregory Jarvis David Brown, Rick Husband Willie McCool Michael Anderson David Brown Kalpana Chawla, Laurel Clark Ilan Ramon

We remember them, we honor them, because they are our heroes, and we need our heroes. But there are many heroes in this business. And WE remember them. WE understand the sacrifices they make in a way the public cannot. But WE will never forget. Kevin was a hero in so many ways. As you read about his long battle with cancer, you can’t walk away unmoved, even staggered, by what he endured. But his fight is not what made him a hero. The fact was that despite of his personal pain he continued to be an explorer, an extraordinary engineer, a friend, a husband, a father. And he did it with a spirit that was infectious and alive. THAT is why he was a hero and WE will never forget HIS name. He embodies the spirit of exploration that we hold to fiercely.

Deneen, Nick, Kelden…we share your loss and grief deeply. We have lost one of our own as well. But the value of our pursuit demands that we go on. The greatest honor we give to the one’s we have lost is to go on, even stronger in our resolve to push the boundaries of our existence. We stand on the shoulders of giants that blazed a path before us, into orbit, on to the moon. Now we will go forward on Kevin’s shoulders and remember what we learned from him. To be technically strong, to love our jobs, to be dedicated to the task before us, to be good friends, to love life while we have it, and to be good parents to our children.

On October 6^th, 2008, we flew an American Flag over the Mission Control Center at the Johnson Space Center in honor of Kevin’s life. Deneen, I now give it to you and your family, to keep forever as a symbol of NASA’s deepest pride in the service that Kevin gave to us and gave to his country. Thank you for giving us so much of his time in life, for we, as part of a family ourselves know how precious this is. With it also we make a promise to you that we will never forget his name. He is our hero, and WE will never forget.

Celebration of Life

2008-10-08T22:30:00.004-05:00

Kevin had requested that his body be donated back to the Medical Center that provided him such good care in hopes of furthering research with cancer. Therefore we will not have a traditional wake/burial, but instead will have a celebration of his life. Kev always enjoyed a good party, so this one is for him.

Thursday, Oct 30 at 5:00 pm
Lakewood Yacht Club
2425 NASA Parkway
Seabrook, Texas 77586

Dress is business casual - no black suits allowed. Can you imagine Kev hosting a party with black suits?

Hotels are still hard to come by, so for anyone travelling from out-of-town, please contact Laura Merritt (laura.r.merritt@nasa.gov , 832-260-4321) and she will set you up with some wonderful housing courtesy of folks from work and the sailing club.

The format is open, but I’m thinking some music, a slideshow of photos and time for anyone who would like to share a few stories. Jay McAndrew (msjaym@gmail.com , 713.504.3360) is taking care of organizing this. Please contact her if you’d like to say something - I think this will be the best part.

RSVP is not required, but we would like an estimate just to make sure we have enough food and seating. Once you know you’re coming, just drop Kathy Goethe (algoethe@earthlink.net , 281-844-7010) a note and let her know how many will be attending.

Thanks everyone and we hope to see you in a few weeks.

Kev's Flag

2008-10-06T17:58:00.009-05:00

The folks at NASA-JSC flew a flag over the Mission Control Center (MCC) today in honor of Kevin.

The Lead International Space Station (ISS) Mission Engineering Room (MER) Manager, Ryan Prouty, opened the MRR with the following words:

"Many of you in this room and on the net had the pleasure of working with and knowing Kevin Pehr. As you know he has been battling melanoma for years. He passed away Saturday morning at home with his family. I wanted to take the time to ask that you keep Deneen and their children, Nick & Kelden, in your thoughts. As you walk out the building today, the flag above the MCC is flying in Kevin's honor, and will be presented to his family. Knowing Deneen & Kev, they would not want people to dwell on the sadness of losing a friend, not to mention a great engineering mind, but to take heart in your own personal treasures. Enjoy your family & friends, and always put the best of you into everything you do. That is what Kev always did."

We went and saw the flag this afternoon and I couldn't help but notice the clear skies and strong wind holding it up. I could feel Kev's presence as we stood and watched and thought of a poem that reminds me of him.

One ship sails East,

And another West,

By the self-same winds that blow,

Tis the set of the sails

And not the gales,

That tells the way we go.

Like the winds of the sea
Are the waves of time,
As we journey along through life,
Tis the set of the soul,
That determines the goal,
And not the calm or the strife.

--Ella Wheeler Wilcox

Kevin Pehr 1963-2008

2008-10-04T17:01:00.001-05:00

Kev passed away at his home early this morning.

He came home Thursday evening - and although he wasn’t responsive, I think he really enjoyed the 30+ mile ambulance ride from the hospital. Hospice was very understanding to our situation. They knew that neither Kev nor I wanted him in an in-patient hospice facility, but they had hard rules against IV drug use at home. Somehow they were able to work it all out. They provided 24-hr continuous nursing care, but on Friday night they could not get a nurse to cover the night shift. Apparently, none of those available felt qualified to administer the array of IV drugs he required, so I took the shift. It was nice that at the end it was just me and him together in his room as his breathing gradually slowed and he drifted peacefully into his next adventure.

We will be having a celebration of his life and I will post details for anyone wanting to attend. Since I know many will be travelling from out of state, you’ll have at least a couple weeks notice.

Thank you to everyone for the outpouring of love and support. It is such a great comfort to us and I know it meant so much to Kev to know his family was being cared for when he wasn’t able to do it himself.

I already miss him terribly.

Love Deneen

short update

2008-10-01T17:03:00.003-05:00

First, thank you for all the wonderful comments - especially all you C-17 guys - its great to hear from you. I've relayed all your messages on to Kev.

Kev’s condition has deteriorated a bit in the last couple days. He is essentially unresponsive now, but at least he has no pain or discomfort. He is receiving round-the-clock scheduled doses of pain and anti-anxiety meds. I’m working with Kev’s Drs to get him transferred back home with Hospice. They believe that he is holding on for something and have encouraged us to say our good-byes and let him know it’s OK to move on. They think relocating him home will provide a familiar comfort that will allow him leave us behind. The main obstacle is that home hospice does not normally work with IV drugs. We are currently trying to figure out if an adequate alternative means of transfer exists or if we can just break the rules. Kev was never one for rules so you know which one I'm hoping for.

Sad News

2008-09-25T13:10:00.001-05:00

We were preparing for Kevin to come home this week with home-hospice, but yesterday things took a turn for the worse. He had been responding quite well to the antibiotics, but then the infection broke through. He remains at MD Anderson and his Drs do not want to release him now. They have him on the strongest of antibiotics but they are merely slowing down the infection and delaying the inevitable. His body can no longer fight off the onslaught of bacteria.

His family is with him round the clock since yesterday and he has brief moments of alertness. He also is being given pain meds as needed. Please pray for a peaceful transition for him.

The clean-up party planned for this weekend will be postponed a week.

The Saints Come Marching In

2008-09-23T20:51:00.002-05:00

For the past week we have had an outpouring of support and help from family, friends, colleagues, friends of friends, neighbors of friends etc. They helped us find a rental, clean up the Todville house, clean the rental (I begged the landlord for keys early so he didn’t have time to clean or do any repairs), packed up what remained salvageable, unpacked at the new house, lent us a refrigerator, went grocery shopping to stock it, housed us and fed us. Luckily these folks are highly motivated self-starters, because I was seldom around – being either at the hospital discussing Kevin’s care with his Drs or on the phone with realtors or insurance companies. Those first few days were pure chaos for me. I went in circles multiple times looking for a path out of this disaster and would probably still be there if it weren’t for our dear friends. - THANK YOU!! THANK YOU!!! THANK YOU!!!! I’ll never be able to thank you enough for helping me get my family settled again.

Kelden & I spent our first night in the new house last night and tonight Nick will have a bed too. Kev’s folks show up tomorrow to help me finish unpacking and my brother, Cale, shows up on Thursday to help out also. For all of you who know Nick and his uniqueness of building/fixing/experimenting, you’ll understand how strong genetics really are. Nick is pure hybrid - not only does he get all these attributes from Kev, but my father could and did fix anything. We never hired anyone to repair or build anything in or out of our house when I was young. Even though he died when my little brother was 13, Cale is exactly like my father and Nick can’t wait to see him again.

Dave McCann is going to organize one last cleaning party this weekend at the Todville house if you’re available. Everything need to be out in the front for the collectors and segregated by appliances / household goods / yard debris.

Lower Todville

2008-09-22T12:17:00.016-05:00

Todville is comprised of an eclectic mix of people and homes - one of the uniquenesses that we loved. Along a two-mile-long stretch of road some of these water-front homes date back to the 1880s and some were built just this year. Most have full-time residents, but some are weekend-homes for Houstonians or vacation homes for out-of-staters. Styles range from simple beach cottages to 7500 sq ft luxury homes. In this day and age of planned communities it was refreshingly different. That will all change now. As I've walked our road, it's obvious that the homes that survived are those built in the last 10 years. Although all the neighbors I've spoken with say they will rebuild, there will be no more "old" homes and the "look" of Todville will never be the same.

Courtesy of the Seabrook Fire Department - Our home is "UNSAFE"

Some of our neighbors who lost everything.

Three homes missing here.

A home collapsed
Windward side damaged

Complete loss
Three homes side by side gone here

This one started on the other side of the street
As did this one
Another complete loss

Lakewood Yacht Club

2008-09-20T18:50:00.009-05:00

Access to power and internet is still difficult. Tonight Kelden & I enjoyed a delicious dinner with the McCann Family (they're fully powered).

Nick & I went to LYC last Monday and I took these photos. Amazingly, most of these boats are now cleared.

"If you are going through hell, keep going." --Winston Churchill

2008-09-16T16:00:00.022-05:00

For the good news, Kev has turned the corner and is trending in the right direct. He's responding to the antibiotics well enough to get transfered to a regular room.

I found a rental house today not far from our home and hope to have keys tomorrow or at the latest Friday.

I have sucessfully registered with FEMA as a homeless refuge and initiated a claim with our Flood insurance Co. Windstorm/Hail and Homeowners are still not answering their phones.

Long awaited pictures from Sunday's excursion:

A shipping crate washed up
what remains of Seabrook Sailing Club - totally guttedKemah

Nick loved all the combat-style police vehicles

what a week

2008-09-15T23:24:00.015-05:00

Mon/Tues - spent all day at MD Anderson doing lab work, meeting with Targeted Therapy (Phase I Trials) and Kev's primary oncologist from Melanoma and then speaking with Social Work. There were some long emotional discussions but in the end everyone agreed it is was in Kev's best interest to stop trials and to receive Hospice care. His blood counts were low, as was his protein and other nutritional levels. The interests now were in preserving some quality of life. The melanoma oncologist suggested some "alternative medicines" including curcumine, bioperane, birch bark extract, red grape seed powder, white/green teas, dark chocolate & acai. It was a solemn departure since he has been such a large part of Kev's life these past 9 years (and the one most responsible for giving Kevin these extra years) and with our good-byes we all knew we would never see each other again.

Wed - Kev is exhausted from Mon & Tues and sleeps until 4pm. Rumors are Ike is heading to Gulf Coast including Galveston Bay. Evacuations are voluntary and I decide to wait until the they are mandatory, knowing our city (Seabrook) is usually very conservative in calling for evacuations and Kev doesn't need the added stress of an evacuation right now.

Thurs - Evacuations are mandatory with Galveston in the morning and Seabrook and surrounding coastal areas in the afternoon. The kids & I work all day to collect, pack & load the necessities in the car and board up the back of the house. Kev monitors the news and updates us with trajectory changes. MD Anderson calls and informs us Kev has a urinary infection (from the analysis they ran on Mon). They can't call the Rx into our local Walgreen's because they have already closed down so we have to stop by MDA pharmacy to pick up the antibiotic. Luckily it's not too far out of the way since we are evacuating to our friends, Karen & Sam's house near the medical center in Houston. With our arrival we turn their home into Noah's ark - their 2 kids, our 2 kids, their 2 dogs, our 2 cats and our 2 hens and turtle. The cats get the kitchen, the hens the backyard & the dogs the rest of the house.

Fri - The storm's trajectory is shifting north and it looks like we are going to take a full hit. Nick & I decided to make a run back home and grab a few more things - just in case. The storm starts to roll in about 10-11 pm. I awaken a few times throughout the night and even though we find out later the winds hit 80-100mph, where we're at (~50 miles from coast), the inside of the house was fairly quiet. Multiple transformers blew out through the night and our power was lost at about 2 am.

Sat - We awaken to very calm skies. We're in the "eye". It's sprinkling outside but we all want to check out the neighborhood and see how everyone faired. Looks like other neighbors have the same idea. Karen & Sam's street was pretty clean, but just a block over in either direction huge oak trees were down. The bayou had spilled over into the street, but within the few hours we were out it was noticeable the waters were receding. Cell phone coverage is poor, but texting with folks on the outside informed us that the storm had broken up and the worst was over. Nick & I decided to head down to Seabrook to see how our home stood up against the massive forces of wind and water on the coast. No matter which way we tried, all entrances to Seabrook were closed off. A group of about 15-20 of us were waiting outside the roadblock. We saw a fellow sailing family (Goethe's) and quickly struck up a conversation to pass the time. The Police consistently told us they didn't know why Seabrook was closed, they just enforced the orders. not too long thereafter the Fire Chief and then the Mayor showed up and explained there were multiple gas leaks and power lines down. They need to safe the city before letting anyone in. In addition the sewer treatment plant was not functioning and it made no sense the let the folks come back into their houses if they can't flush toilets. They let everyone know the status of each neighborhood - everything is pretty good (shingles missing, fencing down) with the exception of Todville Rd. I started making calls to see if I could catch a ride on someones dinghy - it was the only way to see the waterfront property.

Sun - I have 3 potential rides set up from guys from the club, but coordinating time/location is horrible due to poor cell coverage. Nick & I finally decided to drive to Kemah in hopes of connecting with 1 of them. While still playing phone tag Nick & I walk around Kemah Boardwalk. The destruction is massive and does not give me much hope for our home. We finally hook up and catch a ride over to see our house. The ride over there is ominous. The fish market is gone. Seabrook Sailing Club is gone - nothing but a few cinder blocks. The houses behind it are gone. There are bare patches and severely damaged homes all along the coast. I have a hard time recognizing our home - Nick points it out - a huge relief when I see that a structure still stands. But then I realize why I didn't recognize it - it's not blue. Did the storm strip the siding off? Upon closer inspection I realise the storm tore the entire backside of the house away and the white walls I see are what used to be interior walls. But amazingly, Kev's dock and deck he built are not only standing but not even missing one board! There is part of someone else's dock leaning up against ours. Anything remaining in the house is pushed into a jumbled pile in the front of the house. There is clothing hanging from our tree branches and it's not ours. Most of what is in the yard is not ours. We have debris from neighbors to the north and debris from neighbors to the south. Seems like the wind must have been blowing in all directions. Some of our things are in the ditch across the street. Some is houses away. Some will never be found. There is an obvious gas leak from our neighbor. We take a bunch of pictures, check out our neighbors houses which are far worse and then leave. Later that night we're informed the west side of Seabrook is open but without power. Our side is still closed off. The schools announce closures for another week.

Mon - There is still no power in Houston, just a a few grocery stores are open and even fewer gas stations. But weather is nice so no AC is not a problem and Karen is keeping us well fed. She has the camp stove gourmet technique mastered. But I'm starting to doubt power is going to come back anytime soon and after seeing the mess on Todville, I am doubting the city will open up our side of Seabrook anytime soon. Waiting for something to happen gets to be too much and there is definitely the feel that we are still in a war zone so I decide maybe we should leave - drive somewhere where life in more normal. After considering options I settle on Shreveport LA. The hotel will accept cats but the hens need to stay behind. It's almost noon so I go to tell Kev our plan only he is still sleeping. When I try to rouse him I notice he is warm - fever 38.3C. hmmm...i see the plans unraveling. I put in call to Kev's Dr at MDA and await the return call. In the mean time Nick & I head back to Seabrook again. This time with the hens which we are leaving in Dan & Melissa's yard. We swing past Lakewood Yacht Club for a look - serious damage to buildings and boats. We're notified our area of Seabrook is open. Kev's Dr calls back and says he needs to come into the Emergency Center. I cancel the Shrevport plans and switch gears into staying in Houston. I take Kev into the EC while Kelden & Nick stay and eat with the Karen & Sam & family. Nick plans on staying down in Seabrook with friends from the club so he can start cleaning out the house. I'm staying with Kevin (which explains my access to electricity & wi-fi). Kelden is staying in Houston at least for now. I know she wants to try to salvage some of her belongings also.

I have pictures I can post tomorrow (Tuesday).

Ike - yikes!

2008-09-12T17:55:00.005-05:00

We expect to loose power in a few hours, so I thought I’d make one last post BI (before Ike).

Seems like people in the cancer world should get a free pass on things like natural disasters and parking tickets. Which presidential candidate can delivery on that? I’m voting for him.

Denial has served me well for that last 8 years. Although the threat of a hurricane has always existed, we’ve never sustained serious damage from any of the strong storms we’ve had living on Galveston Bay. Usually they are just fascinating to watch. And then there’s the clean-up. The yard fills up with debris from the bay marking the high-tide line. Part of my confidence stems from the fact that our house is 107 years old (built in 1901) and survived both Carla (1961) and Alicia (1983). Of course Jim Cantori (The Weather Channel) just announced “this is the strongest storm to hit the area since 1900”. – OK so much for my proof test theory. Nick & I went back home this morning (~11am) to grab a few more things and the tide was already rising. The dock was under water (but still holding up) and so were most of the neighbors’. (Kelden posted pictures in this morning’s post.). Nick just spoke to a neighbor that was trying to get back home and gather some more possessions, but the police were not letting anyone into Seabrook – it’s entirely blocked off.

Kelden and Nick have been a HUGE help. Kev’s manned the TV/Radio while the kids & I boarded, packed and loaded the vehicles. We keep telling Kelden this can be her “interesting life experience” that all her college applications are asking for ;-)

Karen Bernstein and family (husband, 2 children and 2 dogs) have graciously taken us (& cats & chickens & turtle) into their home in a “dry” area of Houston, conveniently located down the street from MD Anderson. We are forever grateful!

Many of our friends and all of our neighbors have also evacuated. We do hope everyone escapes the wrath of Ike. (The predicted 20 ft surge will be devastating for our area including NASA-JSC.) If you’re interested in following the developing storm, The Weather Channel has the best coverage.

See you on the other side…

Calm before the Storm

2008-09-12T09:58:00.004-05:00

Hi again,
So we are at Karens house this morning with 2 chickens and 2 cats and a lot of bags. Mom and nick decided to run back to the house this morning to grab a few things we forgot and to move the little red car into the Boeing parking lot. The news showed the water in Galveston to already be at the top of the seawall and they are still forcasting it to hit southern Galveston which would mean Galveston bay will have a huge storm surge. It sounds like this storm still hasn't formed completly and probably won't before landfall which means the eyewall isn't formed perfectly and thus the storm won't get winds high enough to put it in a cat 3 or 4. But other then the winds it's still a very strong storm. The worst part of a hurricane is the storm surge, which only happens to the right of the eye. Thus if the storm swings north a bit, we should be fine. We still aren't expecting it to hit till tonight and it's supposed to move past us pretty fast once it hits, so hopefully Houston won't flood that badly.

Anyway, sorry no pictures this time- im posting this from my iPod :)

EDIT - Mom and Nick are back, so check out these pics they took down in Seabrook.

We Don't Like Ike

2008-09-11T15:17:00.004-05:00

Hi! Kelden here.
Hurricane Ike is heading almost straight for us and so we are under a mandatory evacuation. We are planning to leave in a few hours for houston where we will bunker down in our friends Karen's house. Nick has already covered up our back windows and I've been backing up anything of importance and moving it to the top of my closet. Mom is running around taking pics of the house before it goes bye-bye. I think we are currently looking at a 10-14' storm surge (just so you know our house is about 12' above the sea level). The water has already started rising, but the storm won't make landfall till early Sat.

It's alot like Hurricane Rita, four years ago, when everyone evactuated and it took some people over eight hours just to get to Austin. But Rita took a turn to the north at the last sec and all we got was wind & rain.

anyway, I'll keep you guys posted on what's going on (at least untill the power goes out)

oh, and let us know what you think our new house should look like!! xD

pic from Weather Underground

edit - here's some pics of our yard right before we leave. you can see that the water is already coming over the rocks

Out & About

2008-09-07T17:43:00.008-05:00

Kev went in for his PET scan on Tues. It went OK given that delays kept us there 4 hours later than planned, but we did manage to get his Methadone Rx refilled. He was so tired by the time we got home he fell asleep early and slept in late on Wed. I think he finally got up about 2 pm. All the Drs. appointments are lined up for Monday so that will likely be another long day. Blood work is scheduled for morning then we have appointments with Social Work, Palliative Care and then Target Therapy at 4:00. If Kev’s lab work is good then the plan is to start a new trial – a combination of Revlimid & Depakote. Kev’s been taking Cipro as a prophylactic antibiotic and it seems to be doing its job – no signs of infection, but we’ll find out for certain with the labs.

We haven’t taken Kev out much for entertainment purposes these last few months, but Friday was the kid’s high school’s first home football game and he was up for going. (For all you non-Texas folks, high-school football in TX is big.) So we arrived early to avoid traffic jams, get a good parking spot and minimize maneuvering his chair through crowds. Nick usually always goes with us to watch his sister march, but this weekend he went to Fort Worth for a sailing regatta. Kev has a tradition with ball games and movies – snacks – and Nick always volunteers to stand in line at half-time to buy Kev his hot dog, popcorn and Coke. The Districts Stadium seats 9500 and I was not looking forward to the half-time queue so I loaded him up with the usual before the game started. The home team won although the first quarter looked more like fumble-ball than football, but the highlight was watching the marching band’s half-time show (Kelden plays flute). We left after 3^rd quarter and all in all it was a good time.

Trials & Tribulations

2008-08-26T23:47:00.004-05:00

We met with Kev’s Target Therapy Dr last Wed and it was fairly informative - most of which confirmed what we suspected, but had hoped against... She explained his situation is very complicated with competing problems. For example, he is taking high dosages of Dexamethasone to keep the brain swelling down and provide a general feeling a wellness, but it also represses the immune system and masks the symptoms of infections – hence the more recent problems; The Lovenox that was prescribed soon after he became paralyzed to prevents blood clots exacerbates the bleeding in the brain …plus a few others... Seems like all the decisions we make these days are based on “lesser of evils”.

She is pretty certain that all the problems with keeping the blood chemistry level is because the cancer has invaded his bone marrow and it can no longer produce blood effectively. This could be verified by taking a bone marrow sample, but we all decided against it. It didn’t make any sense to expose him to the risks involved when the results wouldn’t change anything - we’ll just keep up with the weekly blood checks and supplements.

We also discussed our current options. The ANG1005 study is reopened, but she was reluctant to include Kev. They have one patient, who will begin the protocol, but she’s not convinced the formulation problems are truly fixed and she didn’t want to restart Kev only to pull him off it again. So she proposed a different study – Revlimid with Valporic Acid. Revlimid is an approved target therapy drug for multiple myeloma patients and Valporic Acid (Depakote) is a standard anti-seizure drug, so the “experimental” part is combining the two. Most trials exclude patients with brain or CNS involvement, she explained, so this is the last trial available that we haven’t yet tried. She also brought up the option of Hospice, but that would require stopping treatments and Kev would like to continue with treatments as long as options exist. Even if it doesn't directly help him, what is learned from the trials may help someone else in the future. Research is the only way to stop this dreaded disease.

Next week we go in for a PET scan and if everything goes OK, he’ll start the treatment.

Technology

2008-08-19T23:08:00.008-05:00

A new wheel chair arrived this week. It’s was custom sized for Kev – it’s narrower, has better torso support with wrap-around sides and my favorite feature - much lighter than the previous one.

Kev gets two separate antibiotics, Merrem given every eight hours and Amikacin every 24 hours, administered intravenously through his CVC port in his arm. Each dose is self-contained in a single serving package. The drug is stored in an elastic bladder with positive pressure, wrapped in a puncture resistant cover. There’s no pump and no need to even elevate to get it to flow. A simple easy-turn connection gets it started and when complete, the entire package gets thrown away. It’s set up so easy, they have me doing it. (of course it took up an entire shelf in the frig when they delivered it)

Wednesday we go back to MDA to speak with the Dr from Targeted Therapy (experimental trials). We should get the spine MRI results and discuss if they have anything to offer in ways of treatment.

Kev's Home

2008-08-14T23:09:00.001-05:00

Kev was released this evening – my theory is that they have tired of me asking too many questions that they can’t answer and kicked him (me) out. He came home with a CVC (Central Venous Catheter) in his arm and a set of IV antibiotics along with calcium, potassium & phosphate supplements. Kev’s arms are a mess – he used to have large, blood-full veins, but after years of chemo his veins are small and hard to find. It takes multiple sticks each time they try to put in an IV and each blood draw leaves bruising. He has more track marks than a life-long drug user. Usually the nurses can not even put in the IV anymore and they have to call in the specialists from the IV team. But yesterday when they needed a new line for his platelets transfusion even the IV specialist needed help and pulled out his hip-mounted Venoscope – similar to the stud finder you use in your walls. This was a new gadget we hadn’t seen before.

Even though all the testing is complete, we don’t know what our next step is. Too many of the specialists we need to speak with were out this week so we won’t have much information until our follow up appts in the coming weeks. We did get results back from the brain MRI which showed progression of disease – this removes the option of staying with the Dasatinib & Valproic Acid treatment. And Targeted Therapy suspects that Kev will not be readmitted into the ANG1005 because of the progression also, but this remains to be confirmed with his Study Dr (out of country) and the pharmaceutical company. We have no results yet on the spine MRI. Kidney ultrasound showed no abnormalities. Chest x-rays were normal. No one seems to be able to explain why Kev’s blood chemistry is going so hay-wire and so fast. He feels great now, but of course he’s been topped off with two transfusions of red blood and platelets plus supplements of calcium, phosphates & potassium.

Tests

2008-08-13T14:21:00.001-05:00

Kev completed both MRIs (brain and spine) without any problems Monday night and Tuesday night respectively. This morning they did an ultrasound of the kidneys. When the results are complete we’ll have discussions with all his Drs (Infectious Disease, Neurosurgery, Targeted Therapy & Melanoma) regarding the next plan. Some options presented to us have been:
- reentry into the ANG1005 protocol (they have fixed the formulation problems and it is now reopen)
- continue with Dasatinib & Valproic Acid
- full brain radiation
- surgery
- stop treatments altogether
There are likely other options, but recommendations & decisions will be contingent on results. We’ll have preliminary MRI results later today, but the Drs will likely want to speak amongst themselves before specking with us.

Reassessments

2008-08-09T14:39:00.002-05:00

Due to the recurrent nature of these infections, his PA has decided to take a look at the bigger picture as opposed to just treating the infection like we did last time. So that means Kev will have to spend a longer time in the hospital, but will be able to get new MRIs, confer with specialists from Infectious Diseases, Neurosurgery and reengage Palliative Care.

They currently have him on three different antibiotics – Vancomycin, Meropenem, Amikacin plus fluids. White blood cell count has come down which means the antibiotics are working, but his red blood cell count has dropped too low so he’ll need to get another transfusion. Calcium, phosphates & potassium are also low so he’ll get IV boosts for those too.

Kev is comfortable, eating well and is enjoying watching the Olympics – finally some decent TV to pass the time.

unfortunate set back

2008-08-07T18:20:00.000-05:00

We had to bring Kev back to the hospital this morning. He has been running a slight fever (38.1-38.5 C) since Tues evening. Kev was not fond of leaving the comfort of his home, but after speaking with his PA yesterday afternoon and his Dr at 10 last night, it was determined we had no other options. Symptoms were very similar to last time – tired, weak, loss of appetite and now a fever – all indicating an infection. Curiously he had just completed a 10-day cycle of antibiotics on Tuesday, but his med team wanted him on an IV antibiotic.

Edouard

2008-08-04T21:01:00.002-05:00

The BIG excitement today is Tropical Storm Edouard. Everything is shutting down in preparations for storm hitting tomorrow. Kev’s home health called to make sure we had preparations in place and to let us know that there will be no team working tomorrow. MDA also told us they will be in “lock-down” with support available for in-patients only. NASA & Boeing closed down at noon today with no plans to reopen until Wednesday. TWC has correspondents in Galveston. The local news is recommending filling all the cars with gas and securing rations that would put a Cold War bomb shelter to shame. We sent Kelden to the market to get ice cream and chocolate syrup just in case… OK, so it does look like we will get a direct hit with ~50-70 mph winds, but if you read the fine print, the predictions are for about 4 inches of rain and about 2 feet of storm surge. (for comparison, Allison delivered 40+ inches of rain and Claudette had a 5 ft surge). Other than a lot of hot air (literally) it’s hard to figure out what the big fuss is about.

The calm before the storm

2003 - Grand Teton National Park

2008-07-31T22:16:00.018-05:00

Nick went with us. He was going to visit some cousins but that fell thru so we figured he'd enjoy a little glacier work. We flew in Saturday and met Sammy Sam at the airport. We got a campsite and then they dumped me off at the Ranger station to bivy for the backcountry permits. Sunday, I woke up first in line and got the sites we wanted- 2 days at Meadows and 2 days at Lower Saddle.

Sunday we sorted and packed and then headed to town. Continental managed to tear the shoulder straps off my pack rendering it useless so it was time for a new pack. Lucky for me Teton Mountaineering is well stocked in the latest packs from Arcterx. They had a nice pack with a dinosaur logo just for me. We met my friends Bob and Heidi at the Mangy Moose for some dinner and dessert and a few last minute plans. The next morning we met at the Lupine Meadow trailhead 6700 feet.

My pack was HUGE! I put it on in the parking lot and my legs were wobbly. I was thinking I sure wish I had trained for this. We had 2 ropes (180' x 11mm), 4 harnesses, a small rack, 6 ice screws, 4 helmets, 4 sets of crampons and 4 ice axes plus tent, bags, pads, food for 5 days, 6 shit bags, stove, fuel and the guide book. Nick had a day pack, he carried his clothes and bag, Deneen had a 3000 cubic inch pack and carried her gear plus the crampons, ice screws and some ice axes. Sam and I split the rest. I went for volume and Sam went for weight.

Kev, Nick & Sam with their BIG packs

We hiked in 5 and half miles to Meadows at 9400 feet. It took awhile but we all arrived with no permanent damage. Went to bed early and woke up at 5 for an attempt on the Middle Teton Glacier. We hiked up to 10800 ft to the start of the glacier. Somehow we crossed signals and Deneen and I were waiting for Sam and Nick at the Glacier while they waited for us at the snow field. We finally found them around 8:30 and we're climbing on the glacier by 9. We worked up the glacier crossing 2 minor crevices and belayed the second one to arrive at the moat before the main couloir.

Kev, Sam & Nick starting up the Middle Teton glacier

We lowered Deneen and Nick back down below the crevice. Sam and I continued into the couloir. The couloir was 30 -50 degree ice with a nice layer of rockfall. I led the first pitch and placed 5 ice screws in classic single axe pied a la dinosaur style and set the belay in nice protected alcove. Sam followed nicely with a mix of piolet traction and pied marche or some shit like that. We ran out of time so Sam wrapped and I downclimbed and pulled the gear. I was pretty jazzed for my first ice lead. I had been reading Chouinard and Mountaineering all summer to get this old style ice climbing down and it worked great. The top pitch was around 11600'. We down climbed the glacier to below the top crevice and then I pulled my crampons and glissaded to the base of the glacier, Deneen and Nick had already done their seated glissades to the base and Sam in Rainier Style walked the whole thing down.

Kev pointing to the couloir (photo taken from the Grand)

We stashed all the gear we would need for climbing around 11000 feet and carried the alpine stuff back to the camp. Bob and Heidi met us there, they climbed the SW Couloir to the top of the Middle. The marmots had eaten a hole thru their tent to polish off the last of the desserts; they also ate a good chunk of the foam pad and left plenty of calling cards all over the inside of the tent. Bob was ready for marmot stew but we had a big dinner of freeze-dried lasagna and we were off to bed. The next morning Bob and Heidi headed down and we packed up and moved camp to Lower Saddle 11600 ft. We left all the alpine stuff and extra clothes at 9400 and picked up the climbing gear at 11000 ft. There's a cliff band to negotiate at 11300 and then the last 100 feet seem to take for ever. There's a ranger hut and the Exum hut at the saddle. We set up camp, ate some dinner and then I hiked up to find the approach. I was thinking Nick and I would attempt Owen Spalding but I didn't want Nick to belay. The crowd coming down the peak gave us the beta on Upper Exum so I wanted to check it out.

I hiked to the Eye of the Needle description and figured it out. It's kinda a dumb way to go but maybe it makes the clients think they are getting their money's worth. From there I headed over the ridge and up Wall Street. The move off Wall Street and on to the start of the climb is legendary. The big ledge ends and there's a 6 foot gap that needs to be hand traversed to another ledge on the ridge. Glen Exum climbed the wall and leaped over the gap in 1930 in a pair of football cleats! I climbed across it in my boots and it's probably 5.6, the problem was downclimbing it, it took me a couple of tries before I committed. It's a 2000 foot fall if you hose it up.

The Grand at sunset from the Lower Saddle

The next morning we got started around 6 am. The guides had left at 4 am so it was relatively quiet. We planned to all climb the Upper Exum. We arrived at the Wall Street around 8 am with one party in front, one soloer passing us and another party of kids from CO behind us. The plan was for me and Sam to switch leads then Deneen and Nick would simul climb with me or Sam basically soloing (still roped but loose) and spotting Nick. Nick had rock shoes and the rest of us had mountain boots, Sam's had hobnails in them. Sam lead the gap and I led the first pitch which is a lot like Snake Dike, golden nobs, 5.4 and not much pro. The climb is about 1500 feet with 3 good roped pitches and the rest wandering in and around towers on the ridge. I think we made the summit around 1 pm.

Nick and Sam on Exum Ridge.

The team on the summit - Deneen, Kev, Sam & Nick

It was a great day but the afternoon thunder showers were coming so we headed down. We did 2 raps, one short that could be downclimbed and one 120 foot free rappel. I lowered Nick on both raps. From here you're on Upper Saddle at 13000 ft with a great view looking down the North Face. It's an awesome view of 6000 feet looking down into Cascade Canyon. We hiked and downclimbed all the way back to camp with the last 30 minutes in a light rain. We all climbed in the tent and then the skies opened up. I had slept outside all week in good weather but it wasn't going to happen tonight. We got a short break at sunset to cook dinner and then back to the tent for a squishy night.

Friday we packed up and hiked down to the Meadows to retrieve the remaining gear. My pack was pretty big but I decided to glissade the glacier in style instead of plodding thru the talus. Nick thought this was a great idea as well. It was kinda interesting that no one else from the 60 climbers a day had come up with this idea. The glacier was pretty steep where I traversed in but I could kick steps OK. Nick headed in much lower and I told him to kick steps to the middle of the glacier so he would be clear of the rocks in the runout. He made it most of the way before he slipped or meant to slide back down into the rocks. He bumped into the rocks feet first going slow and was fine but I was thinking it was pretty risky. I kept going until I was sure I was clear of all the big rocks. I didn't have an ice axe or even a dagger rock but the ice had a thin layer of slush on top and I figured I'd be OK. I was turning around to face down hill for my glissade when my feet slipped out from under me. Instantly, I was flying down hill on my butt and pack I tried digging in my heals but they kept bouncing around, I thought about spinning over on my face and trying to arrest on my toes but I thought I was better off seeing were I was going. I was bouncing around a lot and my hands were hurting so I pulled them up off the snow and concentrated on the avoiding the medium size rock down in front of me. I could see I was going to hit it and wanted to make sure I would land both feet on it and push off. I did and kinda glanced by it unscathed. After that it was just a runout and soon came to a stop. I had this brief idea of trying to spring to my feet at the end of the slide to make it look like I was in control but I was shaking to bad and really was just happy to be alive after fucking up. I stopped and stood up. Nothing appeared to be broke but my head was buzzing. A bunch of people were yelling at me from the ridge, apparently they were concerned about my water bottles strewn across the glacier and felt it needed my immediate attention. I was more concerned on whether or not I really had crapped my pants. I regained my composure, waved to Deneen and gathered up the water bottles. Nick came out to congratulate me on a spectacular slide. I brushed off the snow and we slid and walked down the snow field.

Kev & Nick walking out on the snow field

A really long time later we emerged at the parking lot and headed out for ice cream.

Kev and Nick near the end of the trail.

A good day

2008-07-30T23:55:00.003-05:00

Kev had a good day today. He got up and out of bed and into his chair. He did a bit of reading, even more eating and is back on his meds.

Tomorrow's post is another blast from the past - our 2003 trip to Grand Tetons NP. Kelden was in WA visiting her friend Sarah, but Nick (age 11 at the time) came with us.

The Revival

2008-07-29T23:23:00.002-05:00

For the past few days Kev has done little but sleep. It’s been a struggle to get him to eat or drink anything and I had to sneak his meds into a few bites of ice cream he had yesterday. I tried to convince him that we should contact MDA (considering he had met 4 of the criteria I was told to monitor) but he did not agree. However tonight he wakes up at about 8pm, eats two plates of pasta, a couple slices of pumpkin bread, a liter of water, a protein drink, a bowl of ice cream and watches a movie with us…

Kev's back home

2008-07-28T13:51:00.001-05:00

Kev came back home yesterday evening. His blood levels looked good after 2 units of red blood cells, in addition to calcium and phosphates boosts. Not sure he passed the “no altered mental status” criteria :), but he wanted to go home and his Dr was agreeable. I have a list of symptoms to watch out for and a new prescription for antibiotics to add to all his other meds. He is still pretty tired, so mostly he’s getting a lot of rest, but he is much more comfortable at home.

quick update

2008-07-26T16:32:00.002-05:00

Thanks for all the good thoughts and prayers. The chest x-rays came back clean – no pneumonia. Kev didn’t get moved into a room until Friday evening, so we spent a very uncomfortable Thursday night in the “holding area” of the ER. His white blood cell count was very high and considering the other symptoms the Drs. were convinced he had an infection – likely sepsis (blood infection). Now, after two days on the broad-spectrum antibiotics his white count is normal and the Dr has said he can likely go home tomorrow as long as there is no evidence of fever or "altered mental status". Red blood cell counts have continued to decrease so they’ll do a transfusion later today.

in the ER again

2008-07-24T21:58:00.002-05:00

Last night was difficult for Kev. He couldn’t seem to find a comfortable position – too hot, too cold, wanted to lay on the right side, then the left, everything agitated him. He had taken three anti-anxiety pills and still couldn’t calm down. At about 2am I gave him a sleeping pill which worked great; he fell promptly asleep, but it may have created a “perfect storm” of relaxing meds - he slept all day (& is still sleeping!). His home-health nurse came by today to take his blood and didn’t like his cough, thought his blood pressure was borderline low, heart rate borderline high and had signs of dehydration. So she thought it best for us to go in get an evaluation from MD Anderson. The Drs & I debated whether to admit him or not, but in the end decided it was probably best. They started him on fluids, antibiotics and a breathing treatment to help with the loose cough. Blood work shows lots of off-nominal highs & lows; chest x-rays are still awaiting readings. The hospital is totally full so we are waiting in the ER for a room to become available…

2002 Dolomite Climbing Trip

2008-07-22T22:26:00.023-05:00

Deneen had a business trip to Italy at the end of June so we decided to stretch it into our yearly climbing trip. I shipped the kids off to my folks and flew out to meet her for a week and a half of climbing and exploring NE Italy. I caught up with Deneen in Torino and we checked out the old square, Piazza San Carlo and Piazza Castello before jumping on a train to Bolzano the next morning. We had a little layover in Verona so we strolled around the little medieval town and took in the old castle and churches before continuing on to Bolzano that night.

Bolzano is kind of the gateway into the Dolomites and we would spend the next week climbing along the road between Bolzano and Cortino d'Ampezzo. This is the south Tirol district and most people speak German first and Italian second. Bolzano reminds me of a 18th century version of Boulder, CO. Just stick an old cathedral on Pearl Street and you get the idea - a pretty little town full of outdoorsy stores surrounded by mountains. We picked up a rental car the next morning headed out of town. After three tries we gave up going the way we wanted and found an alternate way out through the rolling hills. Obviously, driving in Italy was going to be a challenge. We figured out most of the signs but there was a couple that stumped us for the whole trip. We headed into the mountains and quickly learned that 'tornato' meant hairpin turns. Deneen wasn't looking forward to this part especially when the sign would say 17 or 24 or my favorite, 31 Tornato, at the base of the pass. Mix in a bunch of motorcycles, bicycles and tour buses and then take away the guard rails on what are really one way roads with two way traffic and the fun really starts.

We were planning on driving about 100 km to Cortina and then use Cortina as a base camp to drive from but it became obvious that hotels were everywhere and we pulled over to check out the rock at Sella Pass after about 40 km. It was about 6pm but the sun stays out almost til 9 so we grabbed the rope and headed up for a 15 minute walk to the first Sella Tower. It was four pitches of arete climbing up to IV+ (5.6?) and we got up it pretty quick.

Sella Tower: Kev on sumit

The rock is limestone with great holds but the crux was really polished, almost like marble, from the thousands who have climbed this classic since it was put up in 1928. We figured out the descent, got to the car and headed down the pass to Canazei and found a B&B just about dark. The next day we got up and headed east to Falzarego Pass but got hung up waiting on a bike race and finally arrived at the pass around 1 pm. We hiked in about an hour to the base of the arête on Hexenstein. The weather was iffy so we checked out WW1 trenches and bunkers on the pass. Apparently, this had all been part of Austria, and Italy failed to take it during the war but ended up getting it after the war as part of the treaty settlement. The passes in this area were covered in old caves and trenches and via ferrata (cable resupply routes) and it's a fun place to explore. The weather looked OK so we headed up the South Rib, IV+ and 6 pitches up the skyline edge to the summit with the final pitch a handcrack.

Passo Falzarego Hexenstein and church

We had the route to ourselves just like the day before. I think the bike race limited the climbers today. We topped out and met a couple who had come up the via ferrata route. We headed down and straight to a nearby Refugio for some dinner and a bed. What a way to go climbing.

Hexenstein: Deneen on Via Ferrato

The next morning we continued down the pass a little way to Falzarego Tower. The parking lot was full of army vehicles so we figured something might be up. We hiked about an hour in and over shot the climb, ending up about half way up the route instead of at the base. After a lot scrambling we found the start and the Italian Army. There must have been 100 soldiers strung out all over the place. But luckily there was only one party in front of us on our route. It was a couple of guys from the Czech Republic. They bypassed the traditional start of the route (the crux) so I figured they'd be slow but we never saw them again so we ended up climbing by ourselves again. The guide book kept warning us about the crowds but we were doing great, 3 for 3 on classic arête routes. It was a little cool, 50's to 60's, and the weather didn't look great but I couldn't complain, I guess the crowd shows up in August. Anyways, this was again IV+ and about 7 pitches. It starts out face climbing but quickly gets you out to the arête for 4 pitches right on the edge, belays were always entertaining watching the army swarm all over the cliffs to our right. We topped out and I was calling for a rest day. Deneen figured she could climb 10 days straight but I was getting a little frazzled. The routes are all run out, I was getting about 4 pieces per pitch (a piece every thirty feet), granted the routes were easy. My rack consisted of 2 friends, a couple of nuts and 8 slings. Most pitches, I just clipped the fixed stuff (old manky pins in horizontal cracks) or slung horns as I found them, bringing more gear wouldn't have made any difference because there wasn't much natural pro. Belays were usually bomber single pieces like the eyebolts on the Third Flatiron. So we headed for Cortina.

Cortina's a ski town with a touch of old history. We found a nice hotel within walking distance of the main square and settled in for some R&R. We found the local department store and had a fun time shopping, they had everything you could imagine, but in typical 'nothing is the same as the US’, you had to pay for what you want on the floor that it came from. This place had six floors, and my credit card got a work out. We couldn't sit still for a whole day so we drove up to the National Park and checked out Tre Cime. It was kind of a crappy day but the rain held back long enough for us to walk all the way around the massif. Cime Grande and Cime Piccolisimo looked pretty good but the aid roofs on Cime Ovest were awesome. As we headed back to the parking lot, we had to run the gauntlet through the local cows. Deneen was convinced we were going to get gored by the bull until I pointed out "his" udders.

Tre Cime: Deneen & cows

The next day we drove up to Cinque Torre (5 towers).

Cinque Torre

We took the chairlift to save an hour of walking uphill and the chairlift drops you off 5 minutes from the base of the route. We climbed Via Miriam V+ (5.8ish), 5 pitches. The route starts up a dihedral (crux) and then skirts a big roof on a 30 foot hand traverse.

Cinque Torre: Kev leading pitch 1 Via Miriam

The exposure was great on the hand traverse and was well protected. The following pitch (V) was up another dihedral and it was long, I reached the belay with one carabiner left on my rack. We topped out and then got cut off on the descent near some people behind us who didn't summit. The descent was down a rockfall gully so we had to wait for these guys to clear the gully before heading down. This was pretty annoying but we were patient and eventually got down to the base just as the rain started and the chairlift closed down for the day. It was a long slog back to the car in the rain and I fell in the mud on a particularly steep part to boot. The rain let up just as we got to the car so we tossed all the wet shit in the back and motored over to Canazei to dry out.

The last climb of the trip was the fabled Vajolet Towers and we were definitely saving the best for last.

Vajolet Towers

The approach is a little circuitous. We drove to the little town of Pera, found the bus up to Refugio Gardeccia. From there you hike about an hour up to Refugio Vajolet and dump your packs on a little cable car. From there it's a hike/class II scramble up to Refugio Alberto in the saddle below the climb. The best part is the cable car carries the gear up the hill for you. We got to the hut around 3pm and they would serve dinner til 8 so we took off to climb the Stabler Tower in the middle of the three towers (IV+, 4 pitches).The route was pretty fun and the crux was fun turning a little roof but the crack was wet and cold. The views were fantastic and the belays all comfy. We skipped the summit and rapped off after 3 pitches to catch dinner. Another great meal of Italian and German cooking with a WeisBier to wash it down rounded out the night. Deneen was beat and the hut was kind of cold so she disappeared under a mound of blankets for the night. I got a nice long hot shower up here in the middle of nowhere but it cost 5 bucks and then hit the hay.

The next morning was cold and cloudy so we took our time hanging around the hut waiting for the weather to clear. We were close to 9000 feet and there was still snow in spots. Around 10, the weather started to break a little so we headed back up the rock to climb Delagokante on the first tower (IV+, 4 pitches).

Vajolet: Deneen above Rifugio Alberto

I dropped the camera roping up and the top popped off so that's the end of the pictures. The tower is right on the pass so the first pitch begins by stepping out onto the arête and 500 feet of exposure. From there it's 4 pitches to the top and all of them are right on the edge. The second pitch is very exposed – a sharp, vertical knife-edge, studded with holds. The climbing is fun, holds show up right when you need them and the belays were ledges. The clouds would come in and swirl around us and then break for great views and a little time for the sun to warm us up before the clouds would come back in. We topped out in the fog and then 6 raps got us back down. We packed up our gear and tossed our packs on the little cable car and then headed down out of the mountains. We spent that night in Bolzano, the next morning we dropped off the car and took the first train to Venice.

Venice was wall to wall tourists, but we had a great time. We found a place near the Rialto Bridge with a view of a canal, dumped our gear at the station and bought a one day pass for the water bus and explored the city. We checked out the Basilica and the Doge's Palace in Piazzo San Marco, took the water bus across to the church at San Giorgio and rode the elevator to the top of the bell tower. We had dinner and wine over looking a canal while a thunderstorm raged over head and rode the water bus home during a break in the rain. The trip was coming to an end so a train to Milan and our last night in Italy was spent out on the town by the Duomo and the Galleria in the old part of Milan. The next morning we got up early and jumped on a bus to the airport. The only problem was we forgot some checked luggage at the train station (oops!) stored earlier on the trip. It looked desperate at getting back to pick up the luggage and still catching the flight plus the kids were being dropped off at our house so we had to split up. Since Deneen's tickets were in the left luggage, she got the short end of the stick. We loaded her up with cash put her in a taxi and she raced off to the city. I checked in and struggled through an hour of security. When some guy sat down in Deneen's seat on the plane, I knew she wasn't going to make it.

As it turns out Deneen did get back to the airport with a half hour to spare but they had already closed the ticket counter and bumped her to the following day. This was kind of a crappy ending to a really fun trip. 30 pitches and six climbs, no crowds, no waiting and we finished everything we started plus we got to catch Venice as well.

simple times

2008-07-21T23:36:00.004-05:00

A quick update. Looks like this week should be quiet *fingers x’d* – we have no appts at MDA scheduled. And even the blood work Kev needs on Thursday can be done at home from our home-care nurse who comes weekly. After all the activity of the last couple months, it’s a welcomed relief.

For you out-of-town folks, we had about 5 minutes of excitement this morning when our first potential tropical storm of the season was identified – Dolly. But it looks likes it’s been turning south and will have little if any effect on our area.

Kev has been in very good spirits recently – no anxiety problems and no nightmares. And no need for his anti-anxiety meds. He does seem to like to reminisce about old trips, although he is having some memory issues. Lucky for us Kev always enjoyed writing trip reports. Some of you may have already seen these in their original email format, but starting tomorrow I’ll post some of his “best of” TRs.

Thanks to everyone who has stopped by or called. Kev really enjoys these visits – talking about old times or even just the latest happenings at work. And thanks to everyone who is covering my tasks at work, permitting me to take all this time off to care for him. And thanks for all the delicious treats and dinners that have been delivered! You guys are great!!

A New Course

2008-07-17T22:34:00.005-05:00

We went back up to MDA today to sign consents and start Kev’s new treatment – a combo of Dasatinib and valproic acid (Depakote). Dasatinib is an approved Leukemia chemo and Depakote is a common anti-seizure medication. The study investigates the use of the chemo with high doses of Depakote. There is preliminary evidence that the Depakote enhances the effectiveness of the chemo drugs. (Luckily the insurance company agreed to cover costs - $7000/month!) Kev has taken Depakote before (for its anti-consultant properties) back when he was having seizures. The protocol is very simple – both drugs are oral meds he can self administer. He needs to get blood checks weekly, but we can do them locally at St. John’s. Once a month he needs to go into MDA for an evaluation and every 8 weeks he goes in for scanning. If everything goes well we will not need to travel back to MDA for another 4 weeks!

The anxiety problems seem to be all in the past. He now has Ativan to use as needed and he claims it works great – makes him feel very relaxed and peaceful.

Kev’s folks came out to stay with us for the past week, which allowed me a few days off to watch the kids in their big sailing regatta of the summer. It was really nice to get out and spend some time in the “normal” world. Although it was somewhat bittersweet – usually I’d be on the water with Kev. He always enjoyed watching them sail and overanalyzing their tactical decisions. But I took a bunch of photos and the kids shared the stories each night. Here are a couple of my favorite pics:

Nick hiking out

Kelden relaxing between races

and more changes...

2008-07-14T23:00:00.004-05:00

ANG1005 study is still on hold. Brain MRI shows increased growth from previous scan 20 days ago:
tumor within inferior right frontal lobe increased from 1.1 x 1.3 x 1.2 cm to now measure 1.6 x 1.3 x 1.4 cm.
tumor at right frontal vertex has increased from 1.0 x 0.5 x 0.7 cm to now measure 1.1 x 1.0 x 0.8 cm.
the tumor within the right parietal lobe has begun to bleed since the last scan and a large hematoma (4.6 x 3.0 x4.9 cm) obscures the original tumor.
a small (0.48 cm) tumor is noted within the cerebellar vermis at the vertex.

The recommendation is to start treatment with a combination of Dasatinib and Valproic acid. They are both administered orally and are not experimental so there will be far fewer "observations" involved. However because they are not experimental we will have to pay for them and it is uncertain whether the insurance company will cover. So tomorrow we go back to meet with the insurance coordinator and get this all figured out. MDA is great for fighting with insurance companies.

Anxiety issues are well under control with a new perscription of Ativan.

more changes..

2008-07-11T22:01:00.003-05:00

On Wednesday we went in for a weekly blood check and a simple exam with the Researcher just to make sure everything is doing fine. We had a hint that something might be up when the day before we were told that we would also meet with the Director.
Blood work and exam went just fine, but the Director informed us that the ANG1005 trial Kev is participating in has been put on hold - indefinitely. Apparently the cloudy phenomenon is still problematic. It’s not the appearance, but the fact that the chemicals are precipitating out of solution that has the pharmaceutical company, MDA and FDA concerned about its effectiveness. This type of formulation problem is usually quickly resolved, and everyone expected the original plan of increasing the dilution to 1 liter to fix it, so when that and other attempts failed, the hold was implemented while the investigation continues. So the new short term course of action is to repeat brain and spine MRIs (Thurs & Fri) and meet with the Director again on Monday.

Brain MRI went fine, but Kev had a bit of an anxiety attack on the table for the spine MRI and it was aborted. (I think the meeting for Monday will stand.) Kev has also been having nightmares recently so I’ll call his Palliative Care Drs this weekend and see what they can offer up.

LIVESTRONG Challenge - Oct 25-26 2008

2008-07-07T21:43:00.002-05:00

This year we’ve combined forces with a few colleagues from work and created a NASA team – NASA spRockets. We are looking for teammates! Anyone can join. Options are 5k run/walk, 10, 45, 65 and 90 mile bike rides. The route last year was great fun – lots of ups & downs & curves. Sign up at our team page or check out the team blog for all the important links.

Can't make the event? Consider supporting one of our enthusiastic team members!

The 4th was a BLAST!!

2008-07-05T21:44:00.010-05:00

Thanks to everyone who helped make the party so much fun. Food was plentiful. Live music was awsome courtesy of Ray's Garage Band. Fireworks show was spectacular. The pictures tell it best:

We are having a 4th of July party!

2008-07-02T22:18:00.003-05:00

We would like to extend an open invitation to all our dear friends who have been sending positive energy, saying prayers, bringing over meals and especially those who contributed to the build of Kev’s ramp. We have a great view of the Kemah fireworks from our backyard which will go off about 9:30. We will also have fireworks we’ll start shooting off around 9:00 and we’re told Carter & Paul’s band will start playing around 7:00. Dinner will start about 6:00. We’ll have a bunch of sausages and hot dogs to BBQ. Bring a side dish to share and your own lawn chair. (You’re welcome to bring fireworks also if desired.) The kids can fish, play in the bay and climb trees and Laura is going to bring a small “bounce house” for the little kids. Hope everyone can make it!
Location: Our House.
If there are any problems with parking, there is plenty of public parking at Miramar Park and Meador Park on Hammer and Meyer. Maybe we should we have the teenage kids run a valet service? :-)

Kev went in for blood work this afternoon and an exam and all his numbers are close enough to normal to pass. They seemed a bit surprised that he is not having any significant side effects. We go back next week for more blood tests and then if everything is OK, the following week is another treatment.

SILVER SNOOPY!!!

2008-07-01T23:14:00.021-05:00

Monday was an amazing day for Kev! The guys from work surprised him with a great award. The Astronauts have a special award – The Silver Snoopy – given personally to those “individuals for outstanding efforts that contribute to the success of human space flight missions”. It’s one of the highest and most prestigious honors sponsored by the Office of Space Flight. Kev was nominated for his work with the P6 4B Solar Array Wing repair during the STS-120/10A mission last Oct (see earlier blog entry). The award was presented (at our house) by the STS-120 EVA-4 crew that actually installed the repair. Scott Parazynski and Doug Wheelock (via telephone from Star City, Russia). Management from both NASA and Boeing and a few dozen of his colleagues were present.

The Certificate:

The Lapel Pin:
Scott presenting to Kevin:

Scott & the family - Nick, Kevin & Deneen

(Kelden is Boulder, CO visiting the CU campus):
As an added surprise, the Flight Director, Derek Hassman, and Scott presented Kevin with a piece of Scott's spacesuit (the red stripe from his leg) he wore during the EVA:

Kev was very honored for the award and was especially thankful for the opportunity to speak with Scott and hear his perspective on the EVA repair. In addition, Scott is also an avid mountaneer, so he and Kev exchanged a few climbing stories. (Scott recently returned from an Everest summit attempt).

[Interesting history on the Silver Snoopy.]

I have some more pics and a video of the presentation that I should have linked-up later this week - check back for updates.

Cycle 1 - Days 1 & 2

2008-06-29T18:19:00.002-05:00

Our first appointment on Thursday was an audiology exam at 9:30 am. It was a fairly typical hearing test used as a baseline. The chemo treatment was scheduled to begin at 3:00 pm and we finally found out Kevin was accepted into the study group after checking in for that appointment. First more baseline tests – physical exam, EKG, blood draw and a cognitive/neurological exam. They put in two IVs – one for blood draws and one for the chemo. With the chemo IV they gave Kev some Zofran (anti-nausea med) and then finally started the ANG1005 at about 4:30. The plan was to administer the 500 ml mixture over 1 hr period. Because this drug has never before been tested in humans they keep very close watch on the study group participants. Eight blood draws altogether will be taken before we leave on Th –at the start of the infusion then every 30 minutes for the first 1 ½ hrs and then once every hour for the next 4 hours. The blood draws are for pharmacokinetic (PK) testing which measures the amount of the drug in his body at different time points. Vitals are taken every 15 minutes during the infusion, 30 minutes after the finish and then once every hour for the next 4 hours. A total of 3 EKGs will be run throughout the event.

After about 15-20 minutes one of the Researchers comes in and asks if we had started and I tell him “yes, it’s that milky colored one.” He seemed a bit confused and mumbled back, “milky?...yes…milky…I’ll be right back”. Next comes up the pharmacy Drs who introduce themselves, exam the drug, sort of whisper amongst themselves – “it was clear when we mixed it…must have turned cloudy after we shipped it up here…we’ll be right back.” They all return with the floor nurse and explain that they spoke with the pharmaceutical company, Angiochem, and were told the drug should be fine and Kev should be fine, but asked for it in writing and were going to stop the IV until the fax arrived. Apparently Angiochem changed their minds, because after about half an hour we were told they were not going to restart the infusion. Kev had received about 2/3 of the expected dose and again we were assured he should be fine, but an investigation would be conducted. We stayed the required 4 hours and completed the remaining the blood, EKG & vitals. The drug made Kevin very sleepy and he pretty much dosed off as soon as they started it, but other than that there didn’t seem to be any other side effects. Kev did the give the Researcher a bit of a scare when in mid-sentence he nodded off – one of his classics – head tilts back, eyes lids at half mast, eyes roll back in their sockets and mouth drops open. After seeing his concern, I explained he was just sleeping :-0

On Friday we went back for more blood and a physical exam. They informed us the preliminary investigation determined that the cloudy effects of the drug are a result of the concentration. They have just recently started this highest level of concentration and have decided from now on they will increase the dilution to 1 liter and change infusion to 2 hours. Kev was the second participant to receive the highest concentration and although the cloudy effects were not recognized on the first participate, they believe it was present. We were again assured Kev “should be fine” :-)

We are still chasing a very resilient urinary tract infection (UTI) and were given yet another antibiotic to try. Apparently the bacteria remaining were resistant to the previous two antibiotics he was taking. The Researchers are very careful about infections and told us any fever above 100F means a trip to the ER. Next appointment is Wed for more routine tests.

Lab Rats

2008-06-26T23:37:00.003-05:00

This week has been a whirlwind of events…
Sunday afternoon Kev starts worrying about his left arm which had apparently been getting weaker and loosing sensation. So he calls his Dr and they tell him to come into the ER for an assessment. Kev was obviously concerned that his arm was about to go the same way as his legs. The ER Dr calls in the neurosurgeon on-site (5th year intern). They review the charts/scans and wanting more experience call in the on-call neurosurgeon. They all decided that there really is nothing they can do surgically (since either the brain or spinal tumors could be causing the problem) and paralysis of the arms is likely inevitable, but reserve final decision for Kev’s neurosurgeon himself whom they expected to be in the next day, Monday. Kevin was admitted for observations and we waited. On Monday we found out his neurosurgeon was going to be in surgery all day so he wouldn’t be able to speak with us until Tues – more waiting. But on Tuesday we had a good discussion. Kev and his neurosurgeon get along great. Kev always has a bunch of questions / theories on how the brain works and his Dr really enjoys these conversations. He spent about an hour with us drawing up a bunch of pictures/diagrams and explaining each brain tumor site in addition to the T1 tumor – but the short story is he's convinced that the T1 tumor was the cause of the arm problems and he also was convinced he could remove a significant amount of it and told us he could fit us in within the next few days if desired. So we have another option, but before we make any decisions we want to speak with Targeted Therapy which is scheduled for Wed.

Kev remained “admitted” to make it easier for him since he needed EKG and blood work run on Wed morning and the Target Therapy appt in the afternoon. But just as I was ready to wheel him down for the blood work we were informed that Target Therapy could not see him if he was still “admitted” even though his PA had made some “agreements” the day before– after a few frantic phone calls Kev was discharged in record time – 15 minutes, a process that typically takes hours – and we were on our way. The meeting with Targeted Therapy went great – they presented us with the option of participating in a Phase 1 trail with a new drug ANG1005. It is a mitotic inhibitor combined with amino acid peptide that crosses the blood-brain barrier. It’s considered a “smart-chemo” since it targets the cancer cells specifically without destroying everything else in its path. It has shown promise in lab rats and Kev will be part of a small group humans to first receive the drug. The protocol is pretty simple – IV infusion of 500 mg of ANG1005 every 3 weeks and staging scans every 6 weeks. There is one catch, even though the MDA folks accepted him, the pharmaceutical company, Angiochem, gets final approval and apparently there is some concern regarding his paralysis. A treatment is scheduled for thursday, but is contingent on final approval and we won't know if we have that approval until after we will have already left the house.

Kev decided he wants to try the trial and if it doesn’t work, i.e. tumors grow & his arm further degrades he’ll quit and switch paths.

Thursday proves to be an interesting day….

Hospitalized Again

2008-06-23T23:49:00.004-05:00

On Sunday we ended back up in the ER. Kev was having some loss of control and strength in his left hand/arm and after speaking with his Drs, it was decided to go in for an assessment. Nothing much has happened so far. They pretty much agree that this could be caused by what’s going on in the brain or the spine or both so surgery doesn’t seem like such a good idea especially when surgical risks are accounted for. Radiation is still on the table - both stereotactic or full brain but any of these options would just further delay the possibility of entering a trial. So it seems like the decision we made on Friday – enter into the trial with Targeted Therapy if accepted and consider radiation if not accepted – is still the best. But that being said, Kev’s regular neurosurgeon was not available for consult today, so we’ll speak with him tomorrow and then make a final decision.

On a favorable note, the strength/control loss he experienced on Sunday has not further degraded, nor has it affected the right side. So hopefully it has stabilized. They have him on high dose steroids again to see if that helps. Thanks for all the payers and positive thoughts. Kev is understandably anxious about this latest development, but is doing well.

Iron Man

2008-06-22T12:43:00.002-05:00

Kev has wanted to see Ironman, but due to his busy schedule we hadn’t been able to fit it in. Yesterday afternoon, we finally went – and it was a great movie. Kev was especially excited to see the C-17 used in the movie was the same T1 article that he flew on himself during flight test days. (Kev work on the C-17 program from ’85-’96 starting with original design and following through with flight test and production). And during one scene the main character, Tony Stark, walks off the plane via the Cargo Ramp so we enjoyed up close viewing of the Cargo Door, Ramp and Toes – all of which Kev was intimately involved with during original design. He easily identified the T1 article by the unique hardware installed and was even kind enough to explain each one to us throughout the scene so we too could enjoy the moment. :-) Luckily the movie theater was not very crowded for the matinee showing otherwise we’d have been booted out for talking too much.

The scan results we received on Fri were not good – 3 new brain metastases and numerous additional (although small) subarachnoid/leptomeningeal metastases. But Kev’s oncologist is always optimistic so even though he went through the scans very thoroughly with us, we focused mostly on our options. We have an appointment with the Targeted Therapy on Wed and a tentative treatment scheduled for Th. He seems to think the experimental trials offered by Targeted Therapy are our best option, but we haven’t seen a protocol yet, so we don’t know exactly what these trials involve. If we get accepted, that’s the approach we’ll follow. If we don’t get accepted then we have radiation & surgery options for the brain.

Scan Day

2008-06-18T21:45:00.000-05:00

The PET scan was scheduled to begin at 7:30 am, after waiting to be called and prep work, they inject him with Fluorine-18 / glucose mixture [F-18 fluoro-2-deoxyglucose (F-18 FDG)], which apparently makes him so radioactive that I am not allowed to stay in the room with him. After 1.5 hrs of isolation, the scan begins which takes another 1 hour. So finally at close to 11:00 he finishes up. The MRI was scheduled for 7:30 pm, but we were hoping to sneak in earlier if they had any cancellations and avoid a long day at the hospital. (Kev did not feel up to travelling back home to only round-trip again later in the afternoon). We had a leisurely lunch, relaxed in the Sundial area which has a nice view of Holcomb Ave and various large construction cranes. (Kevin and Nick share a love for construction equipment - amongst other things. I think Nick could say “excavator” before he could say “momma”). They finally let us check-in for the MRI around 5:00 on a “stand-by” basis and gave a beeper so we weren’t confined to the small waiting room. Unfortunately, there were no cancellations and Kev finally went in for the MRI at 9:00 – after1 ½ hrs for the procedure, we should be home by midnight….Results on Friday.

Reorganizing

2008-06-15T16:37:00.003-05:00

This has been a good week for Kev – he has felt well and is in very good spirits. PT & OT each came twice this week and we also had a visit from a nurse. So each day brought visitors.

We have spent most our time reorganizing the house to accommodate his wheelchair and reorganizing our life to fit his new schedule and special needs. Phil stayed with us last week to help with the reorg and keeping Kev entertained. Luckily the wheelchair is narrow enough to fit through the door frames, so most the work has primarily been clearing out translation paths and raising tables etc. He now fits at his desk and has access to his laptop and can also sit at the kitchen table with us.

His new schedule and special needs seemed horribly daunting at the beginning of the week, but they are starting to become routine. He needs help getting in and out of the wheelchair and most items are out of reach – there is very little he can do entirely on his own, although there are many things he can do 90% on his own. We’ve figured out ways to keep the items he needs regularly more accessible to help him be more independent. This has been a learn-as-you-go activity.

Kev’s dad and brother, Tom, arrived yesterday and they are going to be adding more “improvements” this week.

Here’s a couple of pictures of Kev navigating the ramp on his own and visiting with Phil under one of the shade trees.

Home Again

2008-06-08T21:56:00.004-05:00

Kev had a great week and was able to come home Saturday afternoon. On Monday OT/PT had him exercising in bed. On Tuesday they used a hoist (think engine puller) to transfer him from his bed to a wheelchair. By Wednesday he was using a slideboard for the transfers and when the Drs. had their eval later that day they were impressed enough with his progress that they agreed to Kev’s request to come home as soon as possible, targeting the following Sunday or Monday. On Thursday and Friday I had to participate in the training – learning to use a slide board for transfers to/from bed and the car. On Friday OT had him taking a shower with the help of a special shower stool and Kev was pushing for a Saturday release. With the good reports from OT & PT the Dr. agreed Saturday morning to a release later that day :-)

Kev had a couple of his college (CU) buddies in town – Phil Girard & Ken Leiden. They helped us get Kev moved from the hospital back home and cooked up dinner Saturday night. We had a great time relaxing at home and playing cards. Kelden wiped out everyone in 5-card-draw, and then Ken taught us a new game – liar’s poker.

The ramp worked GREAT! It was an easy transfer from the car to the house for Kevin. Laura also informed me this week that not only had the guys at work donated their time and efforts but they also donated all the $$ to fund the project!! You guys are awesome! Thank you so much – it is greatly appreciated! If everything continues to go well with Kevin we are planning on having a 4th of July party - you may have noticed when you were here that we having a great view for watching the Kemah fireworks show. We hope you all can make it - we'd love to thank you all in person.

rehab begins

2008-06-02T21:17:00.004-05:00

Kevin finally moved to the 8th floor on Friday. (new rm # 811 & phone # 713-834-8719) Approvals from multiple departments in addition to our insurance were required and the paperwork took longer than we had hoped. He did get a little PT on Thursday, Friday and Saturday, but the full program started today – 1 hr of PT, 1 hr of OT & 1 hr of group therapy. On Thursday & Friday he experienced a couple bouts of nausea. At first he thought maybe he overdid things a bit but the following time it happened he had only been resting. He has also been battling an urinary infection, likely caused by incomplete emptying of the bladder. The rehab nurses were astonished that the oncology nurses had not performed a bladder scan – which on Friday night determined his bladder was way backed up. After an internal catheterization and draining of 1.5 liters everybody was much happier all around. He is now on an every-4-hrs catheterization program round the clock. In addition it was decided that a full bowel cleansing was also required prior to starting the bowel management program. These guys are serious about their bladder and bowel functions – something most of us take for granted.

We had a nice little birthday party at the hospital for him on Sunday – even had some good participation from the staff. After we finished up our cake we took him back to his room only to find the staff had also brought him a cake. This was then followed by a timely visit from the dietician who, after reviewing his menu items, mentioned he needed to start eating more protein and less sugar :) Apparently he is still losing weight even though he has been eating 3 good meals plus a late afternoon banana split each day. They have him currently at 135 lbs – which is alarmingly thin for a 6-ft tall man. We shared the blog entry with him and he definitely enjoyed it, adding that soon after the picture was taken of him on his brand new 10-speed he rode it down the street and ran straight into a parked car then limped timidly back home. He claims he was watching for moving cars in the distance…I’m sure there’s a Chinese proverb that sums that one up. Anyone know it?

Therapy sessions went well today, but he did say it was pretty hard. PT has him working on his trunk muscles i.e. abs – essentially they had him sit up in bed and hold the position without the use of his arms/hands. OT had him brush his teeth, wash his face and generally clean up a bit. Group therapy? well, he would only say “it was interesting”. It’s nice Kevin is not having any pain issues any more. He is in good spirits, very alert, but is also apprehensive about what lies ahead.

Happy Birthday

2008-06-01T10:51:00.016-05:00

Happy 45th Kev! Here's some from the scrap book...

1964, Fairfield, CA

1967, Altus Air Force Base, OK

1976, Beaver Creek, OH

13th birthday with his brand new 10-speed

-the picture was black & white, but based on Kev's desciption of his orange bike and purple plaid pants, Kelden did some color enhancements :-)

Rehab / Boot Camp

2008-05-28T22:10:00.001-05:00

Kevin successfully finished up his radiation today and after speaking with a bunch of specialists, it has been decided that he should go to rehab. The objective being for Kev to. be able to move himself out of bed and into the wheelchair, from the wheelchair to a car and take care of his bathroom needs etc. himself. If he came home now he would require round-the-clock care. Rehab is pretty intense – 3 hours a day – so an eval was required first. But that went well so tomorrow we are expecting him to transfer to the 8th floor. They think they can get him ready to come home in 7 days then after he returns home he’ll be followed up with home-visit PT. Kev is very happy with this plan and looking forward to gaining a little independence.

We also stopped the Temodar today. This was to position ourselves for a possible participation in a clinical trial. It is necessary to be off any chemo or radiation for 4 weeks before starting the trial. We have an appointment set up with them in about a week to see if Kev will qualify. We are taking a bit of a risk because if he does not get in then we just wasted a couple weeks with no treatment, but Kev’s oncologists and PA have already spoken with the trial’s physician and other than the fact that they currently have no openings, they think he will be a good candidate.

Memorial Day

2008-05-26T22:07:00.002-05:00

This will definitely be a weekend to remember. My sister Michelle flew in from PA to visit us for the 3-day weekend. We had planned a quiet relaxing weekend hanging out at the house. When Kev went back into the hospital on Wed, obviously we figured there’d be a slight deviation - probably involving a lot of driving back and forth to Houston, but we never thought…

Laura called me at the hospital on Thursday and said some of the guys wanted to build a ramp for Kevin over the weekend to help him get in and out of the house. I was speechless, mostly because I was still trying to figure out what we were going to do in the next five minutes, much less in a couple days. But it didn’t take me long to realize we would have to do something about the stairs in and out of the house and gladly accepted the offer. I was a little worried these guys had underestimated the scope of the project so told her if it didn’t work out not to worry we figure something out.

By Friday night, Kevin had spoken with Dan concerning design ideas and Alan had made a CAD model getting final approval from Kevin. When I picked up Michelle at the airport at midnight I mentioned there might be a few people coming over to work on a ramp the following day. Dave and Alan showed up early Saturday morning to borrow the van as I was heading out to the hospital. Michelle and Kelden were planning on coming up later and Nick was going to stay home to help the guys out. Next I knew, Nick was calling me about 7:30pm and telling me to check out the blog – I was astounded at the progress. Apparently there were more than “a few” people that arrived – I heard it was closer to a couple dozen. And a handful even stayed later (about 10 pm). When I came home about 11pm everyone was gone but it was also very clear the blog was way out of date – the ramp was essentially finished! On Sunday another good group showed up to finish the details, and were completed by early afternoon. The finished product is absolutely beautiful! It is beyond professional – your craftsmanship is amazing – and all in less than 2 days. If the Space Program gets cancelled, fear not, you have a second calling :-) You were so generous to give up half of your holiday weekend to work in the heat and build this for us. I’m sorry I was not able to thank each of you personally and I won’t be in the office much in the coming weeks; so please accept this huge THANK YOU from us. You are all wonderful!

And a BIG thank you to Laura for organizing all this talent and energy – I can’t imagine anyone else you could have accomplished that.

OMG!!!!

2008-05-24T22:42:00.004-05:00

The guys from work (NASA/Boeing/Lockheed) came over today and built a ramp for Kev. Check out the link to the blog for pictures etc. This is just incredible - you guys & gals are amazing! We are deeply touched. I don’t think we can express how much this means to us – THANK YOU!!!!

The new plan…
Yesterday morning the oncologists came in told us the new plan. It's always nice to have a plan, something to focus on for the short term – a plan is much better than just waiting. The experimental trial is full so we’ll need to wait for an opening. In the mean time we’ll restart the Temodar and start a new round of radiation. For the Temodar, Kev was on a 3 weeks on / 1 week off cycle, but now they want to do 6 weeks on / 2 weeks off. His tox levels are good so they decided it’s best to max him out and try to slow this thing down. The radiation is targeted at the T1/T2 area of the spine (up near the shoulder blades). This is really more of a preemptive treatment. The T11/T12 area is what is causing his present nerve damage problems, but this was radiated with max doses earlier this month. The T1/T2 area also has a significant amount of leptomeningeal disease (LMD) and spinal cord compression. The concern is if this gets worse then he’ll have nerve damage in the upper body too. So it was thought best to go after it now while we’re waiting for the trial to open. They are doing an “accelerated” treatment this time - higher dose (400 centigrays/day) for fewer (5) days. We also decided today to have Kev stay in-patient through Wed when he finishes up the radiation therapy. This was based mainly because his case manager needs to secure a hospital bed for home use for him and they want him to meet with a bowel specialist prior to release and neither of these ladies will be in until Tuesday (due to the holiday Monday). So it just seemed to make sense to stay in-patient through Wed.

Back in the hospital

2008-05-22T22:08:00.002-05:00

First for the good news, Kevin has no pain issues at all anymore, granted he is still on his standard methadone protocol, but he is pain-free, alert and in good spirits. However for the past few days, he has been loosing control/sensation in his left leg, which was getting increasingly worse and then he noticed a similar, but to lesser degree, the same in the right leg, in addition to incontinence. So after speaking with his oncologist on Wed it was decided we should come into ER. The Dr had the MRI already scheduled prior to our arriving, but we still spent 6 hours in the ER, getting the final results around midnight. There were only preliminary readings last night and they called in the neuro-surgical team for consult. It was decided to move him to a standard room about 1:00 am, start him on high doses of steroids, restrict all food/drink in case they ended up in surgery today and wait for his regular neurosurgeon and oncologist to review the final readings and confer with each other.

Later this afternoon we were told the MRI shows the spinal tumors have continued to advance despite the radiation earlier this month and having just completed a cycle of Temodar (Temozolomide). This has further constricted the spinal cord causing the partial paralysis. There are two different kinds of tumors in his spine – the standard solid masses and leptomeningeal disease (LMD). LMD is apparently very rare with manifestation in only about 10% of all cancer patients. It was described to us as a plaque-like growth along the walls of the spinal cord. Because it is so extensive, it was decided that surgery is not an option. The oncologists has explained Temodar is the best chemo for central nervous system (CNS) metastases, but is concerned that there was no positive response after the first cycle -so he wants to pursue an experimental treatment, but first needs to confirm whether Kev qualifies. (Because of the whole blood/brain barrier thing, there are very limited drugs to treat CNS metastases). For now he continues with the high doses of steroids and PT is working with him to develop accommodations and we wait…

Feel free to call, his room number is 713-834-8775.

The Middlegame - Strategy & Tactics

2008-05-21T12:49:00.005-05:00

Three years ago this week Kevin’s regular check-up scans revealed his latest reoccurrence. There were no outward signs - he didn’t feel sick, but then he never did. This reoccurrence was however very different from the others. This was not just one or two isolated tumors that could be easily watched and when became “undesirable” could be surgically removed. This time the cancer had spread far and wide. His oncologist explained that the Beast had made a very aggressive move that should be countered with an equally aggressive treatment plan. The good news was that the brain MRIs were clean.

We had known about the traditional and only “approved” chemo treatment for melanoma since the original diagnosis, but because of its very poor response rate and very bad side effects it was never recommended, but now since surgery was no longer a viable treatment plan we were left with few options. Still, his oncologist had reservations about the bio-chemo treatment (for the same reasons as earlier) and suggested we try an alternate first. So in early June, Kevin started high-dose Interlukin-2 treatments. Because of the potentially lethal side effects, the entire treatment was in-patient in the ICU. After a few rounds, his body couldn’t tolerate any more and there was no improvement in the scans so it was decided to switch to the traditional bio-chemo treatment. This too had to be administered in-patient due to the dangerous side effects. He spent one week in the hospital, two weeks at home to recover and then back again to repeat. Out of the three week cycle, only during the last 3-4 days did he feel well enough to venture out of the house. These treatments made him so sick, that he remembers very little from this entire time period - June through Sep 2005.

There was a positive response – many of the tumors shrank, but his quality of life had gone from 100% to about 20% because of the treatments and in Aug we were informed that now the MRIs showed the cancer had spread to the brain. But, it was explained, we should not despair. The met was in an isolated single location near the outer surface of the brain that could be radiated or if unsuccessful, could be surgically removed. They ordered a spinal tap and confirmed that there were no cancer cells in the spinal fluid. The Stereotactic Radiosurgery occurred later that month and subsequent MRIs indicated it was successful. Kev had some residual side-effects but was recovering nicely from the chemo treatments when a few months later, Feb 2006, he began experiencing seizures. The MRIs were inconclusive and the neurosurgeon was reluctant to open up his skull so we followed a medication route to treat the seizures and a “wait-and-see” approach. It took a while to work out the necessary doses, but this worked fairly well with him experiences only a few seizures through the spring. However in early July, the seizures came back strong and were uncontrollable – we were back in the ER and the MRI showed massive bleeding, swelling and tumor growth so it was decided to surgically remove the brain tumor. But not so quick...they needed to reduce the swelling before opening up the skull. So while keeping him in the hospital he received high doses of steroids for a couple weeks. The surgery was very successful and we also discussed a couple new experimental chemo treatments that would be available after healing from the surgery. This is where the blog picks up in late Aug 2006...

Sleepy daze

2008-05-16T21:23:00.003-05:00

Kev has been feeling pretty good. The pain problems are definitely under control. He has had to use very little of his “break-through” pain meds – the regular methadone doses are working well. He is still taking everything else – Celebrex (anti-inflamatory), Dexamethesone (steroids), Reglan (anti-nausea), Protonix (acid reflux), Lyrica (nerve pain), Senekot (laxative) and Temador (chemo) – at least through the end of the month when we go back to get an MRI of the spine and see the oncologist again. One area of concern though is that he is having problems with loss of sensation in his left leg. The other night when he was walking he fell over because of it. So Nick pulled his walker (from hip replacement days, 1 ½ years ago) out of storage and now he is using that instead of the cane.

He has definitely enjoyed his visitors this week and the meals are fabulous! It has been a huge help – Thank you all very much! Kev has been eating pretty well and getting lots of rest - even sleeping well through the night recently. He is not moving aroung much so I am going to try to get him outside this weekend – the weather should be beautiful.

1989 - The tree hugger

2008-05-12T20:58:00.007-05:00

Kevin was digging through some old climbing stuff to show Nick a few weeks ago. I happened across some old photos and had the idea of posting some of these….

In the summer of 1989 Kev & I took about 6 weeks off work and toured the great climbing spots of the west coast, living out of the 4Runner. We also had a canoe with us and put it in whenever we came across a descent river. We visited Rocky Mountain NP (CO), and climbed Sykes Sickle on The Spearhead. On the hike out there was a full eclipse of the moon – pretty surreal.

We traveled on to Grand Teton NP - this photo was taken atop Baxter’s Pinnacle (we would return to GT many times) and climbed in Fremont Canyon (WY), did a single route up Devil’s Tower (WY) and then we’re totally rained out in the Cirque of the Towers, Wind Rivers Range (WY). We did a couple routes in the Black Hills of South Dakota and even took a very touristy side-trip to see Mt Rushmore (which, after spending so much time surrounded by very impressive natural rock formations, seemed almost graffiti-like).

Climbing continued at City of Rocks (ID) and Smith Rocks (OR). Then some more touristy activity as we drove through Redwood NP (CA) - Kevin always loves seeing the big trees :-) and a stop in Berkeley to see Ken & Shelly before heading back home to Seal Beach.

Homeward Bound

2008-05-09T23:03:00.002-05:00

Kevin came home this evening – with 11 prescriptions! The drive home went fine - no nausea - and he seems to be feeling pretty well. I had to go to Walgreens and buy one of those pill organizers, you know the kind that separates out your entire week’s worth of pills – Sunday through Saturday. Except we use it for a DAILY dose – midnight, 8am, noon, 2pm, 4pm, 8pm, 10pm - 26 pills per day plus two liquids!

Rounding the corner

2008-05-07T20:50:00.003-05:00

Kevin is feeling better everyday, although this morning he did get nauseous while working with the physical therapists. The Radiation Therapy is focused on the T11 & T12 area of the spine since these tumors were the most threatening to his bodily functions – walking and bowels. The others in the spinal area are being left alone for now until they become more painful. The oncologists explained the presentation of tumors in the spine indicate the melanoma has spread to his central nervous system and will now be much more difficult to control. Because there are so many, surgery is not an option and radiation is all that’s possible. Everyone is talking about Kev being released but no one has any specific dates. Kev says he thinks he’ll be ready next Wed. – but we’ll see. Palliative care bumped up his methadone again the other day – now at 15 mg, 3 x day and they’ll probably bump it again tomorrow to 20 mg. One problem is, he is losing weight probably due to poor appetite even though he is getting all his nourishments via IV. He is down to 140 lbs and checked in at 150 lbs 12 days ago. Tonight they started him on steroids – the super drug – it will help with the nausea, pain and appetite. His spirits are very good and we usually take a couple of walks each day - it's amazing how he puts up with so much and just keeps going. He especially likes to go down stairs to listen to the piano player. And he wanted to make sure I made it known that he achieved a “personal best” today - urinating 800 cc in one go!

At the house, we are back on the grid. The plumbing is all connected and functioning. The inspector came out today and the back-fill was complete. A BIG thank you to everyone that brought dinners for the kids this week!! As Kelden said “that is soooo sweeet”. And Nick wants to know when Dan is going to come back and play – I heard stories of them using the propane torch to burn the dead fish that washed up and something about rotten oranges…

Randomness

2008-05-04T22:56:00.001-05:00

I awoke this morning to the screaming of one of our chickens. This is not a common noise and only occurs if they are being chased by a dog or cornered by a raccoon. I flew out of bed and ran outside ready to fend off the intruder only to find the coop closed up tight and one of the hens hanging upside-down by a leg like an acrobat in Cirque de chicken-coop. I can’t imagine how she got caught between the two boards, but there she was. I couldn’t find any significant damage i.e. no broken bones sticking out, but she refused to put any weight on the leg. Nick fashioned-up a chicky-walker device but she would have no part of it and preferred to nest up in a quiet spot under the back deck instead.

Kelden, Nick & I headed up to MDA early this morning because Kev has been more alert in the mornings and the kids had homework to do later. We arrived just as he was returning from Radiation and was not at all alert – so much for that prediction. He managed some conversations and mostly listened to us tell him stories. After he ate lunch and watched Spiderman 3 he perked up a bit and decided he wanted to take a shower. I was not about to let this opportunity pass up. The kids decided they were going to go off exploring the Center (MDA is huge and there are cat-walks that look-over the busy streets below and usually a good construction project to watch, not to mention Kim’s Place which is open only for teenagers - patients & families of MDA with pool table, foosball table, arcade games etc.) and I helped Kevin into the shower. It wasn’t too long before I realized the drain was not, well, draining, but I was not deterred. I threw a towel down to create a dam and to keep the water in the bathroom and hoped Kev wouldn’t notice the rising water. We almost finished before he commented that the water seemed to be pooling up, but I convinced him to finish up quickly and then we would tell the nurse. Kevin is on the 10th floor, obviously if his drain is not working there were bound to be others…The plumbers came fairly quickly with the wet-vac, cleared up the standing water and set to work on snaking the drain. Now this is a sound Kev is very familiar with and it was almost like a lullaby as he drifted off to sleep… The calls coming in over their radios confirmed this was a much bigger problem than just Kev’s room and in the end Kevin would get moved – to a much larger and heavily coveted corner room just 3 doors down – rm 1012, phone # 713-834-8784. In his pod, at least 2 others had to be relocated – maybe his preferred customer status & frequent visits helped him score the upgrade. I do hope this reoccurring plumbing theme ends soon…

Priceless

2008-05-03T22:50:00.003-05:00

Nick spent the day at the sailing club. This weekend is Wheels & Keels, the annual antique/unique car/boat show – one of his & Kev's favorites. I heard they had Al Capone’s car there – they didn’t mention if any bullet holes were visible though. Kelden took the SAT exams in the morning and then she & I spent the rest of the day with Kevin.

Kev does seem to be improving. The acute break-thru pain is essentially gone, so mostly he has only to deal with the background pain. But he is still pretty drowsy from the methadone – usually we can get only about 15 minute intervals of him being “awake”. We did succeed in getting him to eat a few bites of ice cream, pizza, salad & jello today but his appetite is still very low.

On the home front: Our sewer system has officially been declared failed. After 4 snakings in 6 weeks, the plumber convinced us to give it up. So for the last week and half we have had no working bathrooms. Fortunately, the kitchen works just fine - it’s on a different line – remember the part of our house being 107 years-old? We actually have 4 different lines on the property – one being an old septic tank, but that connects only to an outside sink. Well, anyway the line that connected to the bathroom was an old clay pipe that roots got into and eventually it just collapsed. Most of last week our plumber worked with the city to get them to camera the lines and determine where they connect into the main and then he obtained a permit. He plans to start digging on Monday and by Wed we should have a completely new line (60 ft) from the house to the road and he will connect the kitchen into the new line as well. Nick rigged up a grey water system so I could do laundry last week and the sailing club (only a couple miles away) has full amenities – showers & bathrooms – very nice ones too. It reminds me of the MC commercial:
New sewer line - $6000
Memberships at the local sailing club - priceless

Starting Chemo Again

2008-05-02T22:43:00.001-05:00

Thanks to everyone for all the positive thoughts and prayers. Kev says it would be great to have visitors, so if you’d like to visit with him, he is in rm 1015 near elevator E at MDA. His phone# is 713-834-8787. He will be here at least thru next Friday when the Radiation Therapy is expected to end. He also enjoys the comments – there’s a wireless connection throughout the hospital and we can log in from his room.

Palliative care changed up the meds again. They’ve increased the Methadone and Lyrica to 3 x a day and they added Celebrex (an anti-inflammatory). The Oncologists has started him on a new chemotherapy – Temodar. He has had to stop the Ipilimumab for now but Temodar synergizes well with radiation so that’s the best alternative. He has taken Temodar before for treatment of the brain tumors and it had little side effects. They are administering it with Zofran (anti-nausea) just in case. Since the radiation is focused on the spinal tumors, the Temodar is being used for all the others.

MRI results

2008-04-30T23:18:00.002-05:00

The MRI results are in and confirmed what the PET indicated. There are multiple tumors affecting the spine – disease within the spinal canal at T2 with moderate narrowing and within the vertebrae; disease within the thoracic and lumbar spinal canal starting at T8 and extending to the sacrum; larger tumors on dorsal left aspect of the spinal canal at the T11 measuring 1.1 cm with moderate central canal narrowing and a larger tumor at T12 level to the left of midline with severe central canal narrowing. Radiation therapy started this evening and will continue for 7 days. Unfortunately they are only radiating the spine since the diseased area of the pelvis is within the area that already received maximum doses a little over a year ago. They don’t have a plan for the pelvis yet, but are taking Kevin’s case to one of their peer boards tomorrow for expert opinions from other oncologists.

The meds had him very drowsy today so he wasn’t much for conversation. This was to be expected. They did end up keeping him on the Lyrica (for neuropathy) and he commented his feet are actually feeling better. So his is now taking the Methadone, Dilaudid and Lryica.

We have been in this situation of near disaster 3 or 4 times previously, but somehow Kevin has figured out how to escape - we can only hope that his superpowers will prevail again.

The Good, The Bad & The Ugly

2008-04-29T22:36:00.001-05:00

Kevin is actually feeling much better today. The drowsiness has faded (side effect of opiates, usually lasting about 3 days). He was awake all day when I was there and was pretty good with conversation. The PT (physical therapy) folks had him up and walked a loop around the pod. The break-through pain has even lessened some.

The oncologist came by and gave us some bad news. They saw the preliminary results of the PET scan. Full transcripts take 24 hours so they had only the audio in addition to the images. The cancer has spread extensively throughout his body since his last PET 5 months ago. There are numerous new tumors - the pelvis has significant damage and there are suspicious areas in the lower spine. They really want the MRI results before making any recommendations, but said Radiation Therapy was about our only possible option for the pelvis and spine. The big concern right now is if he will qualify for the radiation since he already had radiation on his hip after the replacement and we were told at the time he received maximum (lifetime) dose. The Drs. need to look into this – is this area far enough away from the earlier area - but first they want the MRI…

The MRI was scheduled for late Monday night (~9:00), but Kevin only made it 30 minutes into what is about a 1.5 hour procedure. Having to stay still on the hard flat table became unbearable even though the nurses loaded him up on Dilaudid before being carted over to the scanning area. Kev said it got pretty ugly with the techs trying desperately into talking him into riding it out, but in the end Kev won and they aborted the test. They now have an MRI scheduled for first thing Wednesday morning – this time with assistance from anesthesia. He will have what they call “conscious sedation” – he’ll be able to breathe on his own but for all practical purposes he will be out.

The Palliative Care team also came to see us today. They are concerned about Kev’s delusions and hallucinations - in the middle of conversations he will mix up reality with dreams-like thoughts; in addition he sees things like cats jumping through his window in his periphery vision. Apparently this is not uncommon for opiates, but normally occurs after prolonged usage, so to see these effects after only a couple days is enough to change the course. They removed the MS Contin, Zanaflex (muscle relaxant) and Lyrica (nerve pain) and are putting him on Methadone, 10 mg every 12 hours. He will remain on the Dilaudid (increased now at 3 mg with no time limit) for a few more days as the Methadone ramps up.

Everything is reassessed multiple times throughout the day, but the guess is Kev will remain hospitalized for at least 7-10 days.

Into the ER

2008-04-27T16:38:00.002-05:00

The pain in Kev’s back and legs has continued to bother him – some days were better than others, but mostly it was manageable. The x-ray results a couple weeks ago didn’t show anything that could explain it so he just continued on, taking the pain meds (hydrocodone) when needed. On Friday he was scheduled for his 2nd treatment of Ipilimumab, but we never made it - ending up in the ER instead.

MDA has a standard pain chart – 1 (smiley face – no pain) to 10 (unimaginable pain). At every appointment he is asked about his pain level. Of course it’s all relative and each patient would rate the same pain differently, but none the less it gives them something to start with. Usually Kev responds 2-3; and even when the cancer invaded Kevin’s hip bone and he was unable to put any weight on his leg, his rating never exceeded 7. On Friday he told the ER staff his pain was at 8-9. He received a bed pretty quick and they had him set up with an IV of fluids and some fast acting pain meds (dilaudid). New x-rays were run, but again they didn’t show anything so it was decided to go ahead and admit him.

Unfortunately the hospital was full and there were people in the ER that had spent the previous night there because no beds were available upstairs- they were in the queue ahead of us, but luckily we did get a room later that night at about 9:00pm. Kevin’s oncologist was not in on Friday due to a “family emergency”, so we have not seen him yet. But the Dr who works with him spoke with us yesterday and today. In addition, the palliative care Drs came in today to assess his pain meds and increased things a bit (currently taking MS Contin 30mg every 8 hrs & Dilaudid 2mg every 2 hrs). He is fairly comfortable now (albiet pretty heavily sedated) with pain level ~5. There’re a couple theories as to what’s causing this being tossed around – one is that this is progression of the cancer with possible new tumors in the lower spine; the other is that there may be something amiss with his intestines (likely caused by the Ipilimumab treatment). They took scans this afternoon for the intestines (no results yet) and they’re planning on running a PET and MRI of his lower spine on Monday. He still has no appetite but he’s getting all his nutrition through IV now so no one is too worried about that. Nobody is giving us any timeline beyond getting scans, but there have been hints he may be here for at least a week.

We're in...

2008-04-06T14:42:00.005-05:00

The appt on Friday went well enough. Kev was accepted into the Ipilimumab trial.
For some info on the trial follow this link:
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2007-0730

For Ipilimumab info in general:
http://www.medicalnewstoday.com/articles/73258.php

We discussed the persistent pain in his right leg/hip, but the CT scans didn’t go “low” enough – so no info was gained from that. An X-ray was ordered and we should get results on Monday. On Sat evening he went in for his first treatment. It’s an IV infusion (10mg/kg) that drips over a few hours and then followed by an hour of observations. MD Anderson is the best in trying to provide some level of comfort to their patients. Like in past times he get a private room, can watch TV (Star Wars episode II was playing on Spike) and volunteers come by offering sandwiches, chips & cookies from a cart. Usually Kev is feeling so bad he hasn’t benefited from these perks, but last night he enjoyed the movie and dinner. In addition it’s possible to order from a patient menu. MDA has gone above and beyond expelling the “hospital food” myth – where else can patients order chocolate milkshakes (made with real ice cream), Belgium waffles (with fresh berries and whip cream) or stuffed shrimp with lobster cream sauce!

The treatments are every three weeks with no home meds – what a relief after spending a year with weekly (& sometimes 2-3x/week) appts and daily meds to keep track of. We are very much looking forward to this holiday from appts and treatments and with some luck Kev will hopefully be spared from the more detrimental side effects. And what will we do with all the money we’ll save from parking and gas? Parking is $12/visit – last year I calculated we spent over $5,000 on parking and gas alone!! …Well when one looks for answers, one usually finds answers…our son Nick comes running into the house after breakfast this morning yelling “what’s running? - turn off the water!” Apparently a pipe burst (by the looks of things probably a few days ago) and water was spraying all over under the house. Unfortunately our daughter, Kelden had just started a shower that was abruptly interrupted. Even a relocation to the other bathroom that was “downstream” of the damage didn’t work – meaning there was damage and a clog! Why do these things always seem to happen on Sundays? All of this chaos didn’t seem to faze Kev at all – good thing I have volunteered to channel all levels of stress through me thereby saving him any worry…. Nick seemed confident that he could replace the pipe himself so he and Kev set off to Home Depot…what will I ever do when he goes off to college? Of course this was just another band-aid on a much bigger failing plumbing system..the parallels between Kev's chronic disease and that of our ailing 107-year-old house are beyond comical at times.

And you probably noticed a new blog design! – sort of a virtual redecorating. After nearly 2 years using a “standard template” I have ventured into a custom look. Kelden loves to play around with Photoshop and html etc so she has helped me with the new look. It’s still a work in process, but is definitely coming along. And I'll be adding more pictures too! I love the panoramic of the Rockies.

Take Two

2008-04-02T21:57:00.005-05:00

Kev goes back in for scans again tomorrow – CT and MRI are needed for baseline before he can start the new treatment - Ipilimumab. (This is where we were 5 weeks ago when the brain tumor showed up and everything was diverted to take care of that.) Then an appt with the oncologist on Friday to get the OK and we’re back on track.

He has been complaining about his back a lot recently and he is moving pretty slow. It makes me nervous that there may be a reoccurrence in his bones – hip/spine area. Although getting scans again so soon is a pain – literally – fasting for 6 hours prior, endless hours in the waiting room, the barium cocktail, & enema and iodine injection followed by another hour on the table laying perfectly still – it will be a relief to know the back pain is just part of normal everyday aches.

I needed to pull a summary of Kev’s medical visits last year (2007) for the insurance company and it was staggering to see he had more than 150 doctor appointments last year – it did seem like he was up at MD Anderson almost every other day…hmmm…just about true.

Dexamethasone – The Wonder Drug

2008-03-25T21:45:00.004-05:00

The steroids definitely helped. Kevin was even able to start back at work last Monday. He is still moving slow, has headaches and is easily fatigued, but his appetite is back. Since the surgery, his hip seems to be bothering him more as is the neuropathy.

He had an appointment with the oncologist last Thursday that was a total bust – drive an hour, wait for 2 hrs since appointments are running late, Dr informs him that he can’t start treatment until 28 days post surgery, make a new appt and drive an hour back home…

Tonight we had an awesome sighting. The ATV, International Space Station and Space Shuttle all passed overhead within minutes of each other. (ATV is an ESA transfer vehicle http://www.esa.int/esaMI/ATV/index.html that is preparing to dock to Station early next month). The ISS is by far the brightest thing in the sky and seeing it proceeded by ATV and followed by the Shuttle was way cool!

One Step Forward Three Steps Back

2008-03-16T20:26:00.001-05:00

This past week has been really bad for Kev. The fatigue and discomfort that started on Saturday continued through the week. Kev did little else than lay in bed – he didn’t eat; he didn’t read; he barely spoke – only enough to tell us that he was “just fine”. To me “just fine” usually looks a little different than what I was observing and on Thursday he finally went to see his Dr, receiving an Rx for steroids – 6 mg/day. The neurosurgeon explained that the surgery had been very invasive (much more so than the previous two brain surgeries) and a slow recovery is to be expected. The steroids are starting to kick in and Kev’s been getting out of bed occasionally, watching TV, reading and eating. I think he is on the mend finally. Thursday he goes in to see his oncologist to discuss the next phase of treatments.

note- entry by deneen (must have inadvertently logged in w/ kev's id)

Welcome Home

2008-03-09T15:37:00.001-05:00

Kev passed all his exit exams with ease and gained an early release on Friday night. He even had enough energy to stop by our favorite Japanese restaurant for a bowl of udon noodle soup. Unfortunately, on Saturday he experienced a bad headache all day that kept him pretty much in bed. Today he also has been very tired and has slept most of the day, although he claims the headache has greatly diminished.

Surgery Day

2008-03-05T16:59:00.002-06:00

6:30
There is no bandage on the incision and it looks amazingly clean. Probably only 3 inches long and they didn’t even shave his eyebrow. He is alert, but pretty drowsy and in very little pain. They are giving him morphine, just to keep him comfortable. He’ll stay in ICU overnight and likely get moved to a regular room tomorrow. Thanks for all the good thoughts and prayers.
5:30pm
The Dr. came out and explained the surgery to me. First the scans that Kev had last night indicated significant growth since last week and a pretty large new blood clot. He was surprised Kevin had not noticed any symptoms… well... hmm.. actually there was that intense headache followed by nausea attack on Monday afternoon that Kev attributed to a touch of the flu that seems to be going around... Well, never the less, it would have just moved his admit date up and came with a couple doses of steroids. The incision – there were two options. The classic approach for this part of the brain is an ear-to-ear incision at the top of the forehead, then peel that flap back to get at the surgery location. Kev’s neurosurgeon wanted to try a new approach he calls his “stealth” option. It is an incision just above the eyebrow. He decided to go with the “stealth” approach. From there it is similar as before. A section of bone is removed, the tumor and blood products are removed, the area is cleaned, the bone is re-installed with three dog-bone splices and the incision is sewn up. Everything went very well and Kev is moved to ICU.
4:30pm
The nurse came out to say the resection is near complete and “they are drying up the area”. Next comes closure and then the Dr will come out to tell me how it went.
2:00pm
Well we are off to a very late start. There was an emergency early this morning with a 13-year old girl and our neurosurgeon was needed. So we waited in pre-op for 6 hours. Not a problem for Kev since he didn’t get home until 1:00 am last night. (He had an MRI scheduled at 10:00 pm, but things ran late…). And since he had a bed, he slept the entire morning. Not much for companionship, but I was entertained by the two female 60-somethings next to us, who have been best of friends since middle school and were reminiscing about their wild times in the 1960s & 70s. They were laughing so hard, they may have been enjoying a few things other than memories leftover from the 60s…
The waiting room is nice – hot drinks and a wireless network, in addition I brought my knitting project and Doctor Zhivago – it’s not very often I get 3+ hrs to watch it in full.

Creatures of Habit

2008-03-02T21:50:00.001-06:00

Kevin went in for scans again this past week. It’s been two months without any treatment and three months since his last scans so we were kind of prepared for anything.

The appt with the Orthopedic Surgeon went very well. The hip area has healed great – actually much better than anyone could have predicted. Kev’s mobility is still pretty limited though and the surgeon recommended some physical therapy to strengthen the joint. I think his fatigue and neuropathy problems have lead to a fairly sedentary lifestyle and without exercise he has never re-strengthened his hip joint. So hopefully he follows up with that.

The meeting with the Oncologist went equally well. The CT scans indicate most tumors have remained stable, a few actually decreased in size and a couple grew. This is pretty consistent with his last few scans. Maybe there is some residual effect of the treatment (Abraxane/Nexavar) still helping. …None the less, we are off on a new path…The oncologist is recommending a new treatment – Ipilimumab. It works on a new premise – It’s designed to block the activity of cells that decrease the immune system’s ability to fight cancer. In other words, it is hoped that this will help Kev’s own immune system to search out destroy the cancer cells. It is an experimental treatment targeted at specifically Stage IV unresectable Melanoma patients and there is a series of screening tests that must first be passed, but at this point it is expected he should qualify. Of course, the new treatment comes with the usual of side effects…

The Neurosurgeon delivered some unpleasant news. The MRI shows a new wedge-shaped tumor and an accumulation of blood products in the right inferior frontal lobe (forehead area above right eye) of his brain. This is the same area that was “zapped” last year, so either the laser treatment didn’t work as well as we all thought or coincidently a new mass is growing near where the other was. The blood products are consistent with melanoma. It was agreed that the tumor should be removed as quickly as possible and so Kevin is scheduled for surgery on Wed Mar 5. We’re told they have to cut through the skull again, but this time instead of a nice scar hidden on the side of his head, it will go across his forehead – Frankenstein style or maybe a more stylish Harry Potter fashion…

People say you can get accustomed to just about anything. Habits are habits and repetition makes even the most extraordinary events seem ordinary. When you are first thrown into the world of cancer what follows is nothing short of chaos. Everything is strange and unknown and then there is always the looming threat of death around every corner. But you soon realize that you can not survive living like that day-in and day-out, year after year and somehow you adapt. A new nominal is derived and you soon forget about the other side. The scans, appointments, treatments, and surgeries all become commonplace events. Part of it also may be that it is not so unknown anymore. MDAnderson is dedicated to cancer research and treatment. They’ll care for 80,000 people this year. At each appointment we are entirely surrounded people treating or being treated for cancer. We know all Kev’s Drs. and nurses very well. We know about their families and their hobbies, as they know ours. We know the routine – the 5 am arrival for surgeries, the appointments with the anesthesiologist the day before, the special anti-nausea cocktail to counter the effects of the anesthesia, the pre-op procedures, the special waiting room for the more complex surgeries, the post-op procedures, and the likely transfer to the Critical Care Unit for observations “just in case”. It’s all very routine now.

Happy New Year

2008-01-17T20:45:00.000-06:00

We have been in a chemo hiatus for about a month now. It was planned to last only a couple weeks -the Drs gave Kev Christmas and New Years weeks off which allowed us to travel north and see family and friends. We had a great visit with Kevin’s parents and brothers and their families in New Mexico. Unfortunately his sisters (and families) weren’t able to join. Our children, Kelden and Nick, enjoyed a wonderful day skiing at Santa Fe with their grandfather, uncles and cousins. We then traveled further north to Colorado to visit with my sister and her family. Some of Kev’s buddies from CU even pulled together a last minute dinner party. We took Kelden to a campus visit of CU earlier that day and even though we spent almost 2 hours walking around a very snowy campus in temps below 20F, she really enjoyed it. Of course having dinner later that night with 4 alumni and a CU professor didn’t hurt its chances either.
Kev’s been having a rough time these last 6 weeks due to the development of kidney stones. Although he has never had these before, many of his colleagues have and he’s been receiving lots of desk chair advice and sharing horror stories of “attacks”. After getting scans last week, his Urologist (yet another specialist to add to his collection) confirmed 4 spikey stones, 2mm, 3mm, 6mm, & 12mm, distributed amongst both kidneys and the 6mm residing in the ureter (tube connecting kidney to bladder). For those not metric savvy, 12mm is approximately ½ inch…sort of explains the pain and discomfort he’s been complaining about…
This morning the Urologist went in and extracted the 6mm stone, installed shunts in the ureters and ultra-sounded (more like blasted) those remaining in the kidneys. The shunt will prevent the kidneys from getting blocked and “backing-up”. The shunts are temporary and will be removed later via their attached strings. Amazingly they were able to do all this without any incisions – so Kev has nothing to show for the procedure except for some serious bruising on his back. Kinda makes one wonder what our pioneering ancestors did about these little buggers...

La Dolce Vita

2007-11-17T14:50:00.002-06:00

Last month we rode in the LIVESTRONG challenge. Our kids, Kelden & Nick, myself and my sister, Michelle (who flew in from Phili) all did the 45 mile ride. We had a blast! The ride was great – steep hills, lots of curves and even a small creek crossing. We rode through the Austin country side and past people’s farms. There were over a 4500 participants and more than $3.8 million was raised to fund cancer research and education. It was really impressive to see such a turn-out and the volunteers were great. Thanks to everyone who contributed!

Kev is continuing with his chemo cycles – he finishes up his 9th cycle this week. There has been no discussion as to when these rounds will stop. I suspect that as long as he is showing some positive effects and no better option is available we will continue with the Nexavar and Abraxane. He gets scans at the end of this month – the typical MRI and CT but also this time a PET scan is scheduled. The MRI gives a good look at the brain. The CT is good for the torso – major organs. The PET (positron emission tomography) is a full body scan that acquires metabolic information based on the detection of radiation-tagged glucose. A PET scan can distinguish between living and dead tumors unlike MRI or CT which only confirms the presence of a mass. He doesn’t get PET scans very often – I think he’s only had 3 in the last 8 years. Probably because the cost is more than 10x that of a standard CT and the results would not really change the treatment protocol, given the limited choices. But now they want some info that they can't get from the CT/MRI.

A few weeks ago Kev and a few of his colleagues were rewarded by Boeing with a trip to Kennedy Space Center (KSC) to see the Space Shuttle STS-122/10A launch. Although he had seen landings (at Edward’s AFB), he had never seen a launch so this was definitely a great award. The launch went off on time with mostly clear skies and they had front row viewing near the VAB. (see picture). The following day he returned home to work the mission and was very closely involved in the repair to the torn solar array. A picture of Kev and some colleagues at work.

Apparently his MacGyver skills at keeping old lawnmowers/cars/houses running also work well for space hardware. He was part of a small team that designed and tested the "hinge stabilizer" (aka cuff-link) that resulted in the repaired P6 4B solar array. Here's a couple of entertaining links from Space.com: Terrific mission & How to Build a Cuff-Link.

Although the cancer is not going away, Kev’s health has improved greatly since August. He is completely off all pain meds and he is sleeping far better than he has in over a year. He appears to have healed completely from the hip replacement surgery. He still has a limp and walks with a cane, but otherwise no one could tell he was ever so sick. Even his hair has grown in enough to pass for a nearly normal 40-something!

Chemo continues with cycle 8

2007-10-09T21:17:00.000-05:00

This weekend is the LIVESTRONG Challenge. Thanks to everyone who has donated. I’m starting to worry that our training wasn’t nearly aggressive enough. The 40-mile course is actually 45.54 miles with about 1100 ft of elevation gain. The posting explains: “Route distances will vary slightly for the LIVESTRONG Challenge Austin due to road limitations that compromise the LAF’s high safety standard. However, the constantly rolling Hill Country terrain coupled with heat, wind exposure and the infamous Texas chip and seal pavement makes the Austin course the most difficult in the series.” …hmm..nice – I definitely think the emphasis this weekend will be on “Challenge”.

Kevin is doing great. He is gaining weight – currently at 165 lbs. It’s hard to believe this past spring he was only 140 lbs. He is also regaining a lot of his strength and has even started doing a few little projects around the house. – Must be all the positive energy everyone is sending his way. He is in the 2nd week of cycle 8 with his chemo. Last month they tried to double his dose (cycle 7) and after a couple weeks some of the bad side effects came back on pretty strong, so they backed off. This time through they started him at 1.5x standard dose. His scans continue to show stabilization, but the hope is that we can actually get some regression of the tumors. The brain MRI was also positive (as in good news). The Stereotactic Radiosurgery seems to have helped since the MRI indicates necrosis in the frontal lobe tumor. We also discovered (from scans made the day of the radiosurgery) that just prior to the procedure, the tumor began to bleed quite a bit. But now the scans show a decreased amount of blood indicating it is being absorbed back into to the body.

Stereotactic Radiosurgery

2007-08-19T20:02:00.000-05:00

Despite the name it does not actually involve any "surgery". Instead it uses a focused beam of high-dose radiation aimed directly at the tumor in the brain. Kevin had his procedure a week ago last Thursday, Aug 9th. Unfortunately they changed the plan late the night before and instead of checking in on Wed night they decided we should arrive at the hospital first thing on Thursday - 6:30 am. If there's one thing I'm learning through this journey it's to expect changes, but I still don't like it.

First an IV catheter was placed in Kev's arm for fluids and meds. Next a metal ring-frame was installed on his head. It's held in place with screws in 4 places. Local anesthesia is used to numb the area just prior to inserting the screws. I was in the room with him as they were installing the ring frame, mid-way through the process, the neurosurgeon and nurse look at me and ask if I'm OK. As typical, these procedure are much worse for me than Kev. Luckily I had a chair in a corner and could lean against the wall. After the frame was on, Kevin commented that it felt like his head was in a vise - but of course - his head WAS in a vise.

Next contrast material gets injected in though the IV. This makes the tumor very visible on the CT scans. A cage-like grid is placed over the frame and the entire thing clamps to the table. The cage acts like a grid on a map and helps the Drs determine the exact location of the tumor. After the CT scan we went to a room and waited. During this time the radio-physicist maps the tumor location and determines the best strength and directions for the radiation. Then they actually make a dry-run to verify everything works as planned. This takes about 6 hours and Kevin slept the entire time. I spent the time in silence worrying about the past, present and future.

When the neurosurgeon and radio-physicists were finished they came and got us and took us over to the Radiation dept. Kevin goes on the table with the frame secured to hold his head in position and the high-dose radiation beam is aimed at the tumor from different angles. This takes about 45 mins. The frame is removed and we go back to our room to wait the required 2 hrs (for monitoring) before we can leave. After an hour drive, we made it back home by 7:00 pm.

Now we wait until his next MRI (Sep 25) to see if it was effective. In the mean-time we continue with the chemo-therapy.

Starting Cycle 6

2007-08-03T08:03:00.000-05:00

Wow, it’s been over a month since our last post – time does fly sometimes. We’ve been pretty busy not only with the many Dr visits, but also with all the usual activities a family with two teenagers experiences. Kev recovered very well from his brain surgery although there seems to be some lingering numbness/tingling effects to his left arm. The neurosurgeon agrees that that could be from the surgery since the area of the brain he was working on controls the motor functions of his left arm/side. The very good news is that the pathology report post surgery did not find any cancerous cells in what was removed – the neurosurgeon was as surprised as us since all indications pointed to a reoccurrence.

Kev returned to his chemo schedule the week after surgery and has now finished up cycle 5. Scans last week showed stabilization and some regression of his remaining tumors. So he will continue with the chemo starting cycle 6 this weekend. Much of the usual side effects are still bothering him – the neuropathy in his feet was especially painful so he was given a new drug, Lyrica, to help with that – it’s working pretty well. The hair loss continues. Luckily, all the skin issues seem to be avoided this time.

He met with the radiologist who will be performing the radio-surgery on the tumor in his in frontal lobe next week (Aug 9). Apparently this time they want him to check in the night before and stay over. Since the procedure is scheduled to start at 6:00 am – this is beats an hour-long drive at 5:00.

Kev’s sleep patterns have been a mess for the past month – it wasn’t exactly normal before the brain surgery, but after it really went haywire. Immediately following the surgery Kev barely slept at all. He’d stay up until 4-5 am fall asleep for a couple hours and be up at 7-8. He seemed to have lot’s of energy and would get work complete in the middle of the night – he even finished up the plans for our garage rework/remodel. We suspected this was due to the steroid, Dexamethosone, he was taking to help with swelling reduction/healing. But it continued even after he discontinued use – up to a couple weeks ago. Then he started falling asleep at about 8 pm and sleeping easily until 10 am or when the kids would start making too much noise or needed a ride somewhere. Now he often naps at 3 pm, 7 pm and finally going to bed for the night at about 1 am.

His pharmaceutical menu now includes:
Nexavar (chemotherapy drug)
Abraxane (chemotherapy drug)
Hydrocodone, Oxycontin, Oxycodone & Actiq (his suite of narcotics for pain – his favorite being the Actiq lollipops)
Lyrica (neuropathy pain relief)
Keppra (anti-convulsant)
Ritalin ( to help stay awake/alert during the day)
Ambien (to help sleep at night)

Recovery

2007-07-02T22:15:00.001-05:00

Kev was released from the hospital on Thursday (6/28) and has been feeling great! Seen here visiting with one of our chickens and enjoying the nice weather this weekend. The surgeon did a great job matching up the new scar with the old. I resisted the urge to ask if he re-used the same screws - $1068 ea (and we thought space hardware was expensive)!

Kev was working from home on Thursday and returned to the office today. He meets with the oncologist on Friday (7/6) and his pain management Dr on Tuesday (7/10). Then he goes back to the nuerologist in 3 weeks (7/24) to get his stitches removed.

Post Op

2007-06-27T00:12:00.000-05:00

The surgery went very well and Kev is recovering just fine. He is alert and talkative and is moving around pretty well. They have him taking potassium, magnesium, antacids, antibiotics, steroids and his usual anti-convulsants and Vicodin is doing a good job of controlling the pain. (No chemo drugs for the short term). He did get a couple doses of insulin because his blood-sugar levels were a bit high. This is a side effect of the meds (and is probably exacerbated by his present diet which consists entirely of fruit juice, puddings, jello and ice cream!). He should be off the IVs tomorrow (Wed) and be coming home on Th.
This time around Kev had the idea of getting his hair cut short before going in for the surgery and it looks like it was a good plan. Instead of shaving the entire right side of his head they only shaved a strip along the cut. Once all the bandages come off, we'll get a good picture.
Thanks for all the good thoughts and prayers!

Cycle 4, Week 3

2007-06-23T23:30:00.001-05:00

Kev went in on Friday for his 3rd IV of Abraxane for this cycle. His blood counts were low so he had to go back on Sat for a shot of Neulasta. This helps "boost" his blood cell growth. Because of the sudden growth, this drug often causes bone pain, similar to growing pains that teenagers get. However it doesn't really bother Kev very much.

He also met with his Anesthesiologist (standard visit prior to surgery) on Friday. This is all becoming very "normal" to us now. The nurses in the pre-op recognize us on-site. The anesthesiologist knows the special "anti-nausea cocktail" Kev gets without us even having to mention it. I know which chairs in the waiting room are the most comfortable and what time the nurses come in with their "updates". I have even become accustomed to the 5am check-ins on surgery day. Everything is very predictable and in a sense that provides its own comfort. However we're fully aware that the only certainty is that nothing is certain. So when we were informed that we should check in on Monday at 10am instead of 5, it was a surprise that we gladly took. I hope that's the only surprise we get from this surgery.

Another Surgery

2007-06-14T20:19:00.000-05:00

We met with the neurosurgeon on Tuesday and discussed the MRI. Since his last scan 2 months ago, there is a new small 6mm metastatic nodule in the right orbital surface of the frontal lobe. Additionally he pointed out that there is an increase in growth in the postsurgical cavity. The smallish markings that have been present since the surgery (and have been stable for the last year) were presumed to be "scarring", but this new and sudden growth is indicative of a recurrence.
He explained the new growth is in a fairly insignificant region of the brain. The left part of the orbital surface of the frontal lobe controls primarily "higher cognitive functions" and the right side is the "back-up" for the left side. It is highly unlikely for tumors in this region to cause any seizures or physical/mental impairments other than the effects it causes by getting larger and putting pressure on the brain in general. However the area where the recurrence is (right side frontal lobe) will most likely cause seizures (as we saw last year) and could affect control of left side of his body. So it was determined that Kev should have surgery to remove the recurrence (scheduled for June 25) and a month later will have stereotactic radiosurgery (which is a very precise delivery of radiation) on the new growth. If the stereotactic radiosurgery is not effective (determined by stabilization at 6 months post treatment) then a real surgery will be scheduled. It is felt that we have more time with the new growth to try a less intrusive procedure first, before resorting to "brain surgery".
Additionally, the neurosurgeon offered to remove a larger tumor (approx 3cm) in Kev's neck at the same time as the recurrence. It's not necessarily causing him any problems now but could present eating/breathing issues if it started to grow quickly.
Tomorrow (Friday) Kev get his 2nd weeks treatment of Abraxane as part of his 4th cycle.

Cycle 4 starts

2007-06-12T06:43:00.000-05:00

A brief update:
Kev met with his oncologist on Friday and they decided to start a 4th cycle of Abraxane & Nexavar that day. The CT scans indicated, in general, a slight shrinkage in most tumors. (a more detailed report will follow). The new brain lesion was also discussed and it was agreed that Kev should meet with the neurosurgeon to discuss options. We have an appt with the neurosurgeon Tues.

LIVESTRONG CHALLENGE

2007-06-07T23:19:00.000-05:00

On a more positive note, Kelden, Nick and I have decided to form a team and ride in the LIVESTRONG Challenge this October in honor of Kev.

The money raised funds the Lance Armstrong Foundation. LAF helps people with cancer focus on living. Their slogan - "We believe that unity is strength, knowledge is power and attitude is everything" pretty much sums it up. LAF has been a tremendous help to us providing both practical and inspirational information.

Most recently Cancer supporters here in TX united together to get a Cancer Bill successfully through the TX house and Senate which assures a public vote in Nov and offers Texans an opportunity to approve $3 billion in general obligation bonds that would provide $300 million a year for cancer research in Texas. This is especcially important for us since there currently is no cure or even a standard treatment for Malignant Melanoma. And there is a direct coorelation in cancer research between money and cures. All Kev's treatments now have the same goal - to keep the disease stabilized long enough for a cure to be found. Please join our team, or if you can not attend the Ride, please support the cause by donating to one of our team members. Links to join and to each members webpage can be found on the team page: http://austin07.livestrong.org/team_matterhorn

Join the fight - Take the Challenge!

MRI Results

2007-06-06T17:59:00.001-05:00

Normally appts with the Neurologist these days are uneventful. He manages Kevs seizure activity and anti-convulsant meds. And since he has had no seizures since his brain surgery last August and his anti-convulsant meds hasn't changed since Dec (still taking 1000 mg Keppra twice daily) there is rarely anything to discuss when we meet. But today we had the new MRI results to look at since they weren't ready when we met with the Neurosurgeon on Tues. Unfortunately the results were not what we wanted to see. Kev has a new brain metastisis on his frontal lobe. It presently is only about 4mm and the Neurologist is not worried about new seizure activity since this part of the brain is not usually associated with seizures, but it does present other problems. For one, it pretty much disqulifies Kev from participating in any clinical trials for at least 6 months. In addtion, it's indicative the cancer is becoming more aggressive. Last time a brain metastisis appeared all other treatment stopped and the focus shifted to the brain. We meet with the oncologist on Friday and he is the one that will determine our next steps.

Tests

2007-06-05T21:14:00.000-05:00

Today was a day of tests for Kev - MRI for the brain; CT Scan for chest, abdomen & pelvis; X-ray of chest; and blood draw. He also had an appt with the nuerosurgen to get his stitches removed in addition to a general check-up. Normally we get the MRI the day before meeting with nuerosurgeon so we can go over the results with him, but this time a scheduling glitch put both on the same day. However he does have an appt with his nuerologist on Wed so we get MRI results then. Friday is his appt with his oncologist and discuss which treatment options we should get started with.

Roman Holiday

2007-05-20T11:01:00.000-05:00

Kev has really perked up this past week. It's been 3 weeks since he's had any chemo and most of the side effects are gone. His energy is back and even his facial hair is starting to grow. His meds are down to only the anti-convulsants and narcotics (pain killers). His next appointment is not until June 5 and since the kids get out of school Wednesday (5/23) we are going to escape reality and go to southern Italy for a couple weeks. This will be a very special trip for the four of us. Hopefully everything goes well.

Detour

2007-05-04T19:22:00.000-05:00

Cycle 4 did not start on Wed and we are going to take a short respite of sorts. There are multiple reasons for this - Kev was wanting a break from the side effects that were worsening and his oncologist did not want him undergoing chemo if he was to have surgery. So he is chemo free until early June. There is however, a new twist. Since he was to have the tumor resection done, his oncologist mentioned a trial that NIH has been doing that Kev could qualify for. It's called Lymphodepletion Plus Adoptive Cell Transfer. It has two phases and basically goes like this: Phase I - the tumor that is removed will be used to grow T-cells (tumor fighting immune cells) in a lab. If the growth of the T-cells is successful, Kev gets to continue. Phase II begins with extracting stem cells from Kev's blood, then treating with chemothearpy to destroy his immune system. Then the specifically tailored T-cells will be infused back into his system. There is a lot more details , but for now we are waiting the 4-6 weeks to see if they can get his T-cells to grow.

Kev did have his surgery today (Friday). It went quite well. We arrived at pre-op at 5:30 am and left with one less tumor and 12 new stitches at 2:00 pm.

Cycle 3, Week 3

2007-04-22T22:03:00.000-05:00

Now that we’re into the third month of this latest treatment, the accumulation of the chemo drugs are taking their toll. Kev is feeling pretty miserable most of the time. Although now that week 3 treatment is complete, he gets next week off from Abraxane and is hopeful that some of the discomfort will subsides. He is still taking the Nexavar daily but his Rx runs out the end of this week. He can’t get a new Rx until he sees his Dr. which isn’t scheduled until mid next week (2 May). This is probably just the usual kind of mistake that we often encounter which is resolved after a few phones and trip to the medical center. But this time Kev is not interested in trying to “fix” it. He is looking forward to not taking any chemo and even though at our last Dr. visit the plan was to continue through cycle 4, Kev is now talking about taking a month off. He thinks the side effects of the treatment is causing him more discomfort than the disease itself.

Cycle 3, Week 2

2007-04-15T22:29:00.001-05:00

This past week has been difficult for Kev. His skin has been bothering him quite a bit – it’s peeling, itchy and his hands and feet are cracking near the joints which make it painful to bend his fingers & toes. Also the inside of his mouth is very tender so he can only eat soft, bland foods. In addition, he has been battling intestinal problems and diarrhea. This combined with a general lack of appetite does not help the whole weight gain objective.

We did hear back from the neurosurgeon and since he going to be out of the office on the 27th, we are now scheduled for May 4 for the head surgery.

Cycle 3, Week1

2007-04-07T17:55:00.000-05:00

Well as you can see from the title that we have started another cycle of Abraxane & Nexavar.
The CT scans showed no new tumors and no significant growth in any of the existing tumors. This was interpreted as positive results. In addition there are a few tumors, neck & armpit that don't get scanned in the CT or MRI so the oncologists tracks these by physical measurements. The armpit tumor was greatly reduced, broken up and softer (from ~10 cm to ~6cm) so this was definitely a positive result. It was also discussed that after cycle 4 Kev would get a PET (Positron Emission Tomography) scan. This allows for a full body scan and can identify all his tumors. Plus it can differentiate between dying tumors and growing tumors. Kev has had a handful of PET scans. The first in 1999 soon after his metatastises were initially identified.
The oncologist also concurred to having the subcutaneous tumor removed from the back of his head. He suggested April 27 which would be at the end of Cycle 3. So we now just need to coordinate this back with the neurosurgeon.

Cycle 2, Week 4

2007-04-01T22:37:00.000-05:00

No Abraxane this week, instead an MRI and consult with Kev's neurosurgeon. The results from the MRI were good - no metastases. Kev did ask about the tumor that is subcutaneous and on the back of his skull. It's been there over a year, and it has continued to grow even through the treatments. It is both bothersome, for sleeping, and troublesome in that we're concerned it may start growing into the bone. His neurosurgeon said he could easily remove it - day surgery. We just need to get the OK from Kev's oncologist.

CT scans planned for Tuesday and a meeting with the oncologist on Wed. As long as the CT scans indicate there is some positive effect, we should be continuing with the next cycle of Abraxane & Nexavar treatments.

Cycle 2, Week 3

2007-03-26T20:30:00.000-05:00

Week 3 went well enough. Kev even worked in the yard this past weekend - a first in probably a year. No Abraxane this week, but instead this Wed we get an MRI (brain scans) - [fingers crossed...] A meeting with his neurosurgeon on Thursday will provide the results...
Next week we get CT scans (body) - more crossed fingers... & toes...

Cycle 2, Weeks 1 & 2

2007-03-18T10:29:00.000-05:00

Last week Kev's appetite started to pick up, but still no weight gain. However by this week he had gained 4 lbs! The side effects are still manageable, but his hair is starting to fall out. He is not so fond of going through that again, but it obviously indicates the treatment is doing something to his body - let's just hope there are also some positive responses. Next Wednesday, the 21st, will be his last (3rd) abraxane treatment for this cycle and we will get scans shortly thereafter which will let us know how effective this has been.

Cycle 1, Week 4

2007-03-05T23:14:00.000-06:00

It’s the end of week 4. This was an “off” week for the Abraxane, but Kev did receive boosters for red and white blood cell growth. And the oncologist gave him the “OK” for starting Cycle 2.

Cycle 1, Week 3

2007-02-24T11:08:00.000-06:00

We are noticing some good side effects! Several of Kev's subcutaneous tumors are shrinking. The effect is small but noticeable. We don't know about the internal tumors until he gets a new CT scan, which will be after Cycle 2. It's great though that we can see (and feel) some results from these meds for all the discomforts he has to put up with. The fatigue and flue-like symptoms continue as does the sensitive tongue and cracking skin. Ibuprofen helps with mild fever aches & pains and he has a salt/baking soda mouth wash to help the tongue.

We had a regular follow-up appointment with the Orthopaedic surgeon. He took a new x-ray of the hip and said everything looks great. The artificial joint has not shifted and Kev has healed very well from the surgery. However despite his attempts to gain weight he is still losing - down another pound this week. Kev now weighs 135 and was put on an appetite "enhancer" - Megestrol.

Cycle 1, Week 2

2007-02-18T20:01:00.001-06:00

Side effects are getting stronger. The palms of Kev's hands are cracking and his tongue is extremely sensitive. He is trying to eat soft bland foods. He lost about 10 lbs in Jan because of the side-effects of the radiation treatments so we have been trying to get him to gain weight, but when he weighed in this week he was another pound down.

Cycle 1, Week 1

2007-02-08T22:46:00.000-06:00

Kev started his first cyle of Sorafenib/Paclitaxel on Wednesday. So far side-effects are minimal - mild flu-like symptoms.
And good news - our insurance company has agreed to cover the treatment!

Driving

2007-02-06T21:47:00.000-06:00

Kev is now 6 months free of seizures and is therefore driving again - on a limited basis at least. It has been almost 1 year exactly since his first seizure and when he had to stop driving. He is very glad to be owner of his own schedule again.

The Next Phase

2007-02-03T14:34:00.000-06:00

A little over a week ago (1/24) we met with Kev's Oncologist. He offered us the chance to get into a clinical trial that Kev had wanted to do last summer so we jumped at it. First new scans had to be performed, so appointments were set up for later that night and the following day. The brain MRI had to come back clean otherwise he wouldn't qualify. And an appt was scheduled for us to meet with the clinical trials Dr the following week (1/31).

However, when we came back for the appt with the trials Dr, we were informed that the next available opening was in four weeks. Although his brain MRI was clean, the CT scans indicated a lot of new growth so it was decided that we did not want to wait and opted for plan B, which used one of the same drugs from the trial. Plan B consists of taking an oral med, Nexavar(Sorafenib) along with an IV drug Abraxane(Paclitaxel). (The trial was Nexavar with an experimental drug CCI-779)

Nexavar targets two separate enzymes that regulate the cell cycle. It targets both the RAF/MEK/ERK signaling pathway to inhibit cell proliferation and the VEGFR-2/PDGFR-ß signaling cascade to inhibit tumor angiogenesis. In common language that means it supresses the formation of cells and new blood vessels.

Abraxane kills cancer cells by affecting its ability to stop cell division. It works by damaging the RNA or DNA that tells the cells how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce apoptosis (cell suicide).

Treatment is scheduled to begin on Wed 2/7.