What Now

I'm writing this from Colorado right now. I got on a plane Christmas morning and headed to Denver, where my family was already conveniently assembled for the holiday.

Ryan's service will be held on Thursday, Jan 4th at Faith Evangelical Free Church in Fort Collins, located at 3920 South Shields Street. This is the church than Ryan's parents attend and that Ryan attended for many years growing up.

Soon I will take Ryan's ashes to San Diego, where they will be scattered into the Pacific ocean that he loved so much. I wish we could have made it there sooner, but sometimes the universe refuses to go along with the plans that human beings make.

I assume there will be a wake of sorts in both San Diego and Seattle. I'm a little overwhelmed right now, so if anyone in either of those cities feels like putting that together, please let me know. I know that Ryan would appreciate it if friends and loved ones in his various homes could gather together to share stories and memories of his life.

I know I am not the only one who is grieving and heartbroken right now, but I want to urge you all to celebrate the magnificent opportunity we have each day to show our love toward each other.

Please be kind to your loved ones, to strangers, and to animals (especially cats.) Know that when Ryan died, he left an empty space, but that the empty space is much smaller than the love and joy that he filled us with during his life, and that can never be undone.

In Loving Memory

I am out of energy and this post will be short, so I promise more details later.

Anyway... Ryan left us this morning, a couple of hours ago.

He died at Virginia Mason Hospital. He was with loved ones.

Thank you all so much.

Happy Birthday!

Today is Ryan's birthday!


When he was born, a lot of people weren't sure if he was going to make it, but he is still here 29 years later. I am thankful that he has reached this day and that I have been fortunate enough to share some of his life with him.

Ryan is perhaps the truest, kindest and strongest person I have ever met. Even in the daily chaos and struggle of cancer, he has proved what a truely graceful and remarkable human being he is.

I love you, Ryan.

Greetings from Ken and Shirley

Christmas greetings to our family and friends,
Many of you read this blog more often than we are able to update it. Now that things have slowed down a little bit for me (Shirley), I'd like to add some thoughts. I'm sure you are wondering what we are feeling during this unexpected turn of events in our lives. Our initial shock and grief 5 weeks ago has turned into numbness, then a gradual awareness of God's gracious working in and through Ryan's life and our experience here in Seattle. Today Ryan is sitting up, eating well, talking on the phone, visiting with us, taking his meds. Some days he sleeps more. Hospice is helping to tweak the meds so the pain and nausea are managed. He continues to face each day with courage and incredible peace. He has had one round of chemo, which seems to have made him more comfortable. He appreciates his many visitors, including his brother, sister, and some cousins. He is on oxygen most of the time.
As for us, we are experiencing an outpouring of love from you. We treasure each card, each phone call, every expression of kindness, and every prayer that you have given on our behalf. You are truly "living Christmas" to us, reaching out in love as God did so many years ago in sending his Son for all of us.
Looking forward: Ryan is celebrating his 29th birthday this Friday with another round of chemo. Kendra prepares for grad school in the fall of 2007 by completing a test and application process in January 2007.
Thanks again for your prayers, and may all of you have a blessed Christmas!
Love from Ken and Shirley

A Little Help From Our Friends

As I know I've probably mentioned before, bad times often bring out the best in good freinds.

Our good friends (and former next-door neighbors) Morgan and Sheri, along with some other wonderful people, have organized a bennefit show for Ryan this Thursday, December 21st, at the Funhouse in Seattle.

Morgan's band Steel Tigers of Death will be rocking the house, and the Rat City Rollergirls plan on wrestling in mashed-potatoes and gravy (wear something washable.)

Tickets are $5. Tell your freinds!

Playing catch-up and settling into a rountine.

Note from Kendra: Ryan had this post saved in a draft. It was really hard for him to find the energy to finish it, and, Ryan being who he is, he didn't want to publish something incomplete. I'm sorry he didn't get to finish it:



Well, it feels like an eternity since I updated this site and I really have no excuses. But because there is sooo much info to bring everyone up to speed with, I'm going to have to break this post up into multiple postings over the next few days .

To begin with, though, I would like to give a huge, heart-felt THANK YOU!!!! to Kendra's mother Debra! It is through her generosity that we have been hooked up to high-speed internet here at the apartment and can now connect with all of our friends all over the world! This really means so much to us, Debra, and it wouldn't have happened so quickly and easily without you! Thank you!

I would also like to thank Brian and Teresa for the many trips they have taken down to SeaTac Airport to pick up my crazy friends from CA, and for taking them into their home when needed. You have saved us a lot of headache dealing with the time-consuming logistics.

An Update

I know I said that we would be updating more frequently, but a lot has been going on in the past few days so we just haven't really thought to do it.

Anyway, Ryan started chemotherapy last week. He only goes two days out of two weeks, one after another. Fortunately, the clinic where it is done is right across the street from our place. We joked when we moved to this apartment that if we ever fell off a ladder or got bit by a poisonous spider we could just walk right out the door for medical assistance. Never really thought it would be this, though.

Chemo is pretty boring. He basically sits there for a couple of hours with an I.V. full of drugs. There are suposedly all kinds of weird side-effects, but so far we haven't noticed anything really bad. The side-effects are cumulative, so I expect we will see more in the future.

Another thing about chemo: liver cancer is apparently one of the more chemo-resistant cancers. The doctors want to try it to see how he responds, but if it looks like all the chemo is doing is making him sick, we will stop.

In other news: We have been recieving cards, letters, gifts, donations, and good will from so many people, and I want to thank you all for being so supportive. We could never do this alone.

Back on the Grid

Hey Everyone!

Some dude from Comcast just came by and connected us the cable internet at home, so we'll be able to actually update this thing on regular basis.

Also, Ryan now has thousands of hours worth of flash animation and web-cam diatribes at his fingertips.

Any Good Movies?

I've decided to get Ryan a Netflix membership, since we seem to be passing a lot of time watching movies these days.

Please recommend some of your favorite movies here. Sad, funny, whatever. Just let us know what movies you think everyone should see at least once in their life.

A Close One

Everything is okay now, but last night we had quite a scare!

Ryan was at one of his regular appointments at the hospital when he began to feel light-headed and short of breath. When they tested his vital signs, they said his oxygen levels were dangerously low and sent him to the emergency room.

We spent a long time there and were really worried because they said he may have a blood clot. Everything turned out fine and we left with nothing more than the doctor reminding Ryan that it is important for him to use an oxygen machine often.

In other news, Ryan has friends visiting from San Diego and they are keeping him company while I am at work today.

Outta Here!

Yep! I'm being discharged today at about 3:30pm. If anyone is still planning to visit me at the hospital, I won't be there. And if you've been calling me at the hospital, I will be reachable on my cell phone once again.

I still have four radiation treatments scheduled here at the UW Medical Center, but my primary care provider, Group Health, may want to change that, since they can do it at their facilities too. We will be meeting with a doctor at Group Health this afternoon to decide that. The radiation seems to be helping and there is a noticeable reduction in the size of the lumps on my head.

I am excited to get out of here and get back home. Even with a "pudding" button, hospitals get old after a while. I'm hoping to be able to recover some of my strength that I've lost by sitting here, and I would even like to try and go back to work at some point. It's more of a long-term goal, but something to work towards. It all depends on my strength and endurance.

Thanks to everyone who came and visited me at the hospital! It made the stay much more bearable. And thanks to everyone who has been following and posting to this blog. Your words of encouragement have made this difficult time much easier. It really is a big boost to know how many people out there care for you! Thank you so much!!

I will continue to try and keep this blog up to date, but it might be difficult with no Internet access at home. Luckily there are plenty of coffee shops near by that have access. Keep checking back for the latest news. And thank you all, again, for the support you've given us!

Homecoming?

I probably shouldn't be posting this, because it is still tentative, but I am just too excited not to:

Ryan is coming home!

Some doctors still need to sign off on it, but it looks like he will be moving to outpatient this evening.

I know he is eager to get out of the hospital, and I am eager to have him back in the house. So is the cat, who has decided my toes are not as tasty as Ryan's and has been lurking around the door waiting for him to come in for weeks.

One thing Ryan will have to get used to when he gets home: there is no button he can push to have chocolate pudding brought to his bed. He's been pretty trigger-happy with that button at the hospital, so it may take some time for him to withdraw. If anyone knows of any sort of intravenous pudding-delivery device, please let us know.

About God's Plan

Times like this bring our spiritual questions in even the least spiritual of us.

In the past few weeks, many people have shared their own perspective with me about whatever divine plan is at work here. While I do respect the opinions and (deeply held) beliefs of Ryan and his family, I have remained fairly silent about mine.

The pastor who has kindly opened his home to Ryan's parents was in the room last week and asked us all to pray. I have often told Ryan that I enjoy being present at his family's prayers, because I am comforted by the taking of a few moments to allow the world to stop and focus in on those things which we hold dear, to be together and to reflect on what we have. But then the pastor said something about "God's plan," and how this is all part of it. He said life was like a big race where we would run around in the presence of God and that, for some reason, God decided that this time Kendra and Ryan get to do hurdles instead.

Then everyone nodded and thanked God for His graciousness. I bit my toungue, but at the time my mind screamed out "WHY???"

God says we have to face pain and suffering. It is part of His plan. He makes us "run hurdles" because he loves us. I mean no disrespect to any of the kind people who have been so helpful and loving to us during this time, but I can't seem to find any comfort in that scenario. I can't find compassion within it. When we talk about a person who has this sort of disposition, we call them sadistic, but God 'works in mysterious ways" and is therefor deserving of our praise for the Glory of All Sufferings.

I heard an interview on the radio awhile back (before Ryan's diagnosis) with Julia Sweeney, a comedian who was once in the cast of SNL, among other things. She was raised Irish Catholic and grew up with what she described as a very personal relationship with God.

Julia's brother died of cancer in his early 30s, and while she was still caring for him she was also diagnosed with cancer. She wrote about it in her book, God Said 'Ha!':

"It is comforting to imagine there's a power that knows you, a consciousness cheering you on.

But if you pull the camera back it becomes horrifying. So was it God's lesson for my brother, to have him die of cancer at 32? If you look at that in a bigger way, it's really awful."

I thought of this interview when I thought about "running hurdles." And I agree. The way I see it, there is no plan where soem divine being strikes innocents down for some mysterious and seemingly arbitrary reasons (after all, Osama Bin Laden is not the one with cancer, is he?) For me, that is far more comforting. Bad things happen. Good people come through to support you. We live, we love, we die, and that's okay.
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edit: I just want to reiterate that I did not post this with the intention of insulting anyone's faith, and that I do not begrudge the faithful. I have no intention of starting an argument or theological debate. It's just something that has been on my mind a lot. There is an old cliche that "there are no atheists in foxholes," but like many cliches, it is just not true.

In the end, though, I know that Ryan and I both have love and respect for one another, including respect for each other's different understandings of the metaphysical. We've been able to discuss them openly, answering each other's questions in the best way that we know how. While we still come to different conculsions about the way the world ultimately works, I think we each at least understand how the other got there.

I know that Ryan's faith is giving him strength during this time, and for that I am thankful.

Thankful

I was really looking forward to Thanksgiving this year mainly because the doctor's said that I could leave the hospital for a few hours. But then they took me for a walk while measuring my oxygen saturation in my blood and decided it was way too sporadic to let me leave without an oxygen tank, and then we found out that it's against policy to check out an O2 tank for a few hours... So much for that idea. Wish I could have been there Brian and Teressa and the rest of the crew! As if that wasn't bad enough they gave me a new pill to replace the Furosimide which knocked me flat on my back for the rest of the day, so I didn't even get to hang out with my family. I really hope tomorrow goes better.

Full House

Over the last few days more and more relatives have been showing up so it's been getting pretty busy around here. Right now it's my mom and dad, Uncle Tom and Aunt Jan, my brother Matt and my sister Renee and brother-inlaw Rick with the whole family in tow: Megan, Jenna and Jason. Kendra's mother is also out here from Colorado. It's really nice to have such a loving and supportive family gathered around you at a time like this. I thank God everyday for the blessing of a great family!

Not much is happening on the medical front. Yesterday we took a break from the radiation treatment and started it back up today; we'll be starting the x-ray treatment on my back tomorrow. They have decided to extend the radiation treatment to two weeks instead of one. We are also continuing with the Albumin/lasix treatment to reduce the swelling, it doesn't seem to be having as positive an impact as it did last weekend.

Saturday

For the last few days the oxygen saturation in my blood has been dropping and my weight has been increasing, which means I'm retaining water again. Today my legs where swelled back up to the size they were when this all started. This is caused by something called Protein-Losing Enteropathy according to my cardiologists and occurs sometimes in people who have had a Fontan surgery. The cause is unkown, and it basically means that my body is losing protein.

Normally, when your body maintains the proper level of protein, the protein soaks up fluids and keeps it in your bloodstream so your body can process it properly. When your protein gets low, the fluid it would soak up can leak outside of your bloodstream and collect in you legs and abdomen, causing swelling. And when you sit in a hospital bed all day, it can collect in your chest cavity causing breathing problems like the low O2 saturation. The way we are getting rid of the excess fluid is by adding Albumin to my blood stream to draw the fluid back into the bloodstream, and then giving me lasix, which is a diuretic that causes me to "process" the fluids more quickly than normal. Although I got rid of a lot of fluid today, my legs are still pretty swollen and so we'll probably have to do two more "doses" tomorrow, one in the morning and one in the afternoon. Hopefully that will get me back down to my dry weight.

I also had another radiation treatment for my head lumps. It was quick, painless and really uneventful. We'll start doing both radiation treatments on Monday.

A moment of peace

Ryan's parents took this from the hospital window.

Prognosis

I had a chance to talk with Dr. Eaton, my Oncologist, about the situation more in-depth this afternoon. The prognosis is better than I anticipated, but still pretty bleak. The cancer has advanced too far to be cured. If we do nothing, they estimate I have approximately 6 to 12 months left to live. He made it very clear though that this is not a very accurate time frame, it's based on other people in my situation, but is in no way an accurate number. It could be less, it could be more, it could even be a lot more. So we are all trying to stay positive and hope for the best.

As far as treatment goes, the only type of treatment they can offer at this point is palliative care. This means that they can take measures to make me comfortable and to enhance the quality of my remaining life, but will not be able to extend my life beyond a few months. The radiation treatment is a good example of this. They are hoping to reduce the size of the tumors on my head so that they do not press against my brain and cause mental difficulties. They may even be able to stop them from growing any further. But this does not guarantee that new tumors won't appear in the future. It also does not stop the cancer from continuing to spread throughout my body. Because most of the tumors are small and spread throughout my liver, lungs and spleen, it would be impossible to treat each one with radiation and would cause extensive, and fatal, damage to the organs. One option that Dr. Eaton is talking to the team about is a chemotherapy treatment that is used in some lung cancer instances. It has the potential to reduce the size of most of the tumors, however, they have limited experience using it for liver cancer and therefore aren't sure if it will be effective at all. They would have to wait until after the radiation therapy is done before they can even begin the chemo, so he will be using that time to discuss the risks vs. benefits with many other doctors before we have to make a decision.

Nuked!

I got my first radiation treatment today for the tumors on my head. It was a very simple process, each zap only takes about thirty seconds, and they have these thick metal plates with the shape of each tumor cut into it so that they can limit the area that they radiate. They also did a simulation for the tumor on the back of my chest cavity. They had to do a very precise CAT scan, making marks on my chest and sides with a Sharpie, then sent the pictures to some doctors somewhere else. The remote doctors assembled the images into a 3D model and plotted the best angle to shoot the radiation without hitting any lung tissue or other organs. Then they sent the info back to the radiologists here who tattooed some points on my chest and sides so they can aim the equipment for the actual treatment. They are going to use X-rays for my back instead of the Electron Beam they are using for my head. Since it can be a lot more damaging to other tissue they need to hit it more accurately. They will be doing both radiation treatments over the next week.

Answers

Today we finally got the answer to the big question, "What kind of cancer is it?" The answer is, Liver Cancer. They've had a very difficult time identifying it, and kept telling us, "Tomorrow, we'll know tomorrow..." So now we are ready to discuss treatment options and what the prognosis really is. That will give us a much clearer idea of how to plan out the next couple of months.

Yesterday we talked to the Radiation people about starting me on some radiation treatment for the tumors on my head. These tumors seem to be growing at an almost visible rate and if we don't slow them down or shrink them, they will start pressing on my brain soon and causing major problems. They were pretty confident that a weeks worth of radiation treatments would reduce the size of the tumors considerably, and stop their growth. So today will be the first day of radiation, at around 3:15pm. The radiation they are going to use is an Electron Beam which is a highly focused beam that only penetrates about 3 cm deep. In other words, they won't be nuking my entire head. The side effects are skin irritation (redness, like a sunburn), possible hair loss (Gene, just shut up...), fatigue and nausea. The treatments will only be for about 15 minutes each day, for a week.

How We Got Here

This post is to summarize the events of the last few months so that you (and we) can try to make sense of everything that is happening now (not that there is really anything about this that makes "sense.")

I'm writing this from Ryan's room at the University of Washington Medical Center. We first arrived at the UWMC on Thursday, Nov 9th, for an appointment with the cardiology specialists. Ryan had been experiencing swelling, cramping and soreness of the legs, as well as shortness of breath. It soon became obvious that something was very wrong. These are all symptoms that indicated heart trouble, and because Ryan has a history of heart trouble, it seemed to be the logical thing to check out.

In the past few months (starting around mid-August or so) Ryan had been feeling fatigued and often felt sick after eating. Any amount of alcohol (even a single glass of wine) would make him nauseous. In addition, he had pain in his back, which is not really out of the ordinary for regular people. He made appointments with physicians and a chiropractor, and we thought we were well on the way to better health.

The prospect of long-term reliance on heart medication, or even *shudder* transplant surgery, was pretty intense, but in hindsight I would give everything for those particular intensities.

After being admitted to the hospital Ryan received a series of MRIs for his chest, with the assumption that the doctors would be able to determine if something was wrong with his heart that was affecting his circulation and may account for most of the symptoms. The results of the MRIs were surprising. His heart looked fine, but doctors found a "mass" growing on the back of his chest cavity (right in line with the side where Ryan had been complaining about back pain.) This was something else to look into, they said, but not necessarily cause for alarm.

As more MRIs were done and more results came back, it became apparent that this mass was not the only one. His lungs, liver and spleen all have multiple tiny (1 cm) tumors. There is one large tumor on his hip, one in his chest cavity, and three large tumors that have taken the place of bone in his skull.

While all of this seemed to point in only one direction, we were told to wait until a biopsy was done to make any assumptions. Three days ago, the initial results came back. Cancer: yes. Malignant: yes. Aggressive: yes. Source: undetermined. As of this post we do not yet know the source of the cancer. The doctor who just left the room indicated that this may be one of the 2-4% of cancer cases where the source is never determined. Unfortunately, knowing the source is a big part of knowing where to proceed from here. They tell us there are still more tests to be done. This cancer stuff is a lot more complicated than I ever imagined.