Blue

Well, our world cup game didn't go as we'd like, Ghana’s slide tackles and two goals won them a place in the next round. I’m happy for Africa to still have a team in there to root for, but Garrett might be done with this World Cup completely. It was fun while it lasted, in the end unfortunately a downer this weekend.

Friday we had a long day starting at 7:30am checking in to the hospital outpatient infusion center for a blood transfusion. As much as his blood counts have been rising, it is still not enough to avoid transfusions all together, but spreading them 5-6 weeks apart instead of 2-3 weeks is much healthier. The hyperbaric oxygen therapy will make the red blood cells Garrett does have work harder too which usually helps anemic people further delay transfusions.

Washington had some blue skies and sunshine this weekend, but we were still feeling under the weather. Garrett’s been sore in the shoulders and back since starting the hyperbaric treatments and trying to eat and drink more to up calories, but finding it hard to get things down. And little Olive got a hitch in her getalong this morning and couldn’t get comfortable. If only half a low dose aspirin could perk Garrett up like it does for Olive. Hopefully next week will be less painful for all of us!

We did have some decent homemade seafood and vegetable tempura for dinner and we're stocked up on Garrett's favorite dessert... mochi ice cream!

World CUpdate!!!

Here we are for anyone who has been following on the morning of the start of the knockout phase. Group play is over and there are no more round robin formats where you get 3 points for winning, 1 for tying, etc. Starting this morning with the Uruguay vs. South Korea game, it is now win or go home. No more ties!!!

There are 16 teams left in the field with our Patriot boys set up at a better than average shot at making a final four run. We play my other favorite team Ghana this morning at around 11:00 our time. This is going to be a tough matchup considering the size and extreme speed that Ghana brings to the table but the US is a much more highly skilled team. When it comes down to putting the ball in the net, we have that ability with 4 or 5 guys while Ghana has trouble finishing.

Should we beat Ghana, which will be very bittersweet for me, we will face the winner of the South Korea vs. Uruguay match that is played before our match this morning. This is thought to be one of the weaker matches of the knockout round, with neither country being a traditional power. Should we be fortunate enough to get to that game let alone win, that would put us pretty much in the Final Four and looking up at the big boys like Brazil, Spain, Portugal, etc. (Notice no Italy or France).

Anyway, thanks for dealing with my soccer updates. This has been so fun for me to keep track of and actually keep my mind on something other than continuous health updates and issues. What do you guys think of the tournament from here on out? Can we do it? Can we pull a couple of huge upsets like we did last summer in the Confederation Cup in South Africa where we almost knocked of Brazil in the Final for our first major tournament victory ever? It all starts today.

Chemo #11 - wrapping up adriamycin

Late last year when we took a trip to Scottsdale, Arizona research doctors at Tgen (Translational Genomics Research Institute) took a sample of bone marrow from Garrett’s hip bone and looked at the cells for genetic markers which can indicate which chemo drugs might work best against Garrett’s cancer. Tgen has matched some genetic mutations to some chemo drugs giving cancer patients a better chance at getting the right drug the first time instead of just looking at treatment success from other people with the same type of cancer. This is especially helpful information for Garrett’s oncology team because his neuroendocrine carcinoma diagnosis is vague and no other case is exactly like Garrett’s.  In reality, all cancer patients are unique and the same type of cancer can respond to the same drugs differently in each person's body.  The ability to look at each person as an individual and customize treatment is a great step forward in cancer treatments that are shorter, easier and more effective.

Adriamycin, the chemotherapy Garrett currently gets, was one of the drugs identified by Tgen and has been helpful in decreasing cancer in his bone marrow thus escalating his body’s ability to make healthy blood cells. But it is a tough drug that is hard on the heart, so limits are set for the total amount of adria that is safe to take. After three more doses of adria (up to #14) Garrett will have had the cumulative dose our doctor feels is safe for his heart. Because Garrett still has probably some living cancer cells in his body we will need to start a new chemo drug at the conclusion of this one to keep suppressing new growth. We do not know yet what that next chemo drug will be. Our oncologist will be returning to the report made by Tgen to look at other drugs matching Garrett’s genetic markers and then recommend to us which one to try next. Having the report is also a good argument for petitioning insurance coverage for drugs not normally used for his type of cancer. As soon as we know more about the next drug up, we will share the info!

One week of hyperbaric oxygen therapy is now complete with no significant changes in the way Garrett feels or how his skin tumor is healing (we expect to see/feel changes after 2-3 weeks of treatment, with total sessions up to 4-8 weeks). Other than boring Garrett to tears for two hours, it’s not a terrible drive to Tacoma on days other than Friday. We just purchased a beautiful 15 year old conversion van in good shape with a sofa-bed, comfy captains chairs, tv and dvd player and a few other handy amenities for road trips! Our regular cars aren’t very kind to Garrett’s spine so the commute is made much less painful with this acquisition and it gives me a great spot to hang out in while he is in the treatment tube! We were very lucky to find this van in time to drive it to these every afternoon appointments and we’re looking forward to taking it on a few fun trips this summer too.

Here is my co-pilot waiting for Garrett to get out of the hyperbaric tube!

You Tell Me Where the Foul Is?

Was it where Michael Bradley or Jozy Altidore or Clint Dempsey were being put in headlocks and being simultaneously wrestled to the ground? Or was it where Maurice Edu had his greatest career moment stolen from him? This is so ridiculous, I usually have stupid conspiracy theories about the team I am rooting for always getting screwed in one way or another but this is making me think I am not so crazy.

Then this morning the Ghana "Black Stars" get 65 minutes worth of 11 on 10 soccer after the Australian player got a red card for a hand ball in the box and they can't get a single goal to get the win instead of a tie.

I have loved watching almost all of the World Cup games so far but this can be a seriously frustrating sport, especially for the American minded sports fan who just does not understand how you can run for 90 straight minutes and end up in a tie.

Hyperbaric Oxygen Therapy #1

Garrett made it through many questions, precautions and almost 2 hours of hyperbaric oxygen therapy today!  We won't know for a while how much this treatment is going to help, but for now Garrett is willing to tolerate it everyday and after a few weeks we might start to see signs of healing where there has not been any for many many months. Check out my older posts here on hyperbaric for more info on how it works and other resources, if you are interested in technical info.  There are many rules for patients to follow such as wearing no lotion or hair products, drinking no caffeine or carbonation, changing into all cotton scrubs... etc. for safety and effectiveness of the treatment.  But after all the inconvenience, Garrett lays in a clear plastic tube and can watch tv/movies on a screen above the tube.  Once in there he said he was comfortable.

Tomorrow we go again, our regular appointment will be at the end of the day.

Big big day

I said last week it was about time we got back to work and tomorrow is when it really begins. We’ll be at the hyperbaric medicine department early tomorrow afternoon to get checked-in for a precautionary EKG and chest x-ray before Garrett tests out the hyperbaric chamber for the first time. Crossing all my fingers and toes that the treatment is comfortable enough for him and that time goes swiftly. If things go well tomorrow we will have afternoon hyperbaric treatments every weekday for at least four weeks, we'll let you all know how it goes.

Thanks to all who walked the track, stayed up all night, stopped by to say hello, sent in donations or thought good things for our Relay for Life team, Garrett’s Sneaky Ticklers! We can’t thank Garrett’s devoted friends enough for raising thousands of dollars for the American Cancer Society in his name, especially our team captain, Jason! Very lucky to have great friends and family around.

I’ve been playing soccer my whole life, but Garrett is keeping way better track of the World Cup and professional soccer these days! All I can say is GO USA!

WORLD CUP!!!

This post is totally random and has nothing to do with cancer, which is a relief, but the 2010 World Cup starts tomorrow. For those who don't follow soccer, the World Cup is pretty much the Olympics of soccer. It only occurs every 4 years and not every country gets to take part. The countries taking part spend the 4 years between tournaments qualifying in their regions.

Our US team is strong this time around but is not quite yet on the level of the big boys like Germany, England, Italy, Spain, etc. We have some solid players who will scrap as good as they can to get out of our group (US, England, Algeria and Slovenia). The top two teams from the Group C advance to the playoff rounds. The group round is a round robin format where you play each team.

The US's top players I would say are midfielders Landon Donovan and Clint Dempsey as well as goalkeeper Tim Howard. All currently or have recently played in the English Premiere League (EPL), arguably the toughest club soccer league in the world. Up and comers to look out for are strikers Jozy Altidore, another EPL guy and Ensign Buddle who plays for the LA Galaxy of the MLS. Buddle is on fire with the Galaxy this year and unexpectedly made the US roster strictly because of his run to start his season. I hope the dude gets rewarded with starting, but that is yet to be seen. My personal favorite player is Oguchi Onyewu, our best defender. Onyewu will be very limited though as he is coming off of a torn ACL earlier this year.

Our first game is Saturday at 10:30 am against traditional world power England. This will be our toughest game by far. Although England is in some turmoil and not as powerful as a few months ago. Their two previous captains are no longer captains. The first one, which almost everyone is familiar with is David Beckham, who tore up his knee while playing with AC Milan and will not be able to play in the World Cup. The other previous captain was John Terry, who was stripped of his captainship due to having an affair with a fellow team member, who ended up leaving the team because of the affair. What a classy dude. England does still have a lot of talent though, led by its unstoppable striker, Wayne Rooney. I have watched a lot of the EPL this year and Rooney might be the best scorer I have ever seen.

The US should be able to lose to England, but still beat Algeria and Slovakia to advance from Group C to the elimination round.

My other favorite team is Ghana. This stems from the 2006 World Cup, where Jason, Toby, Scott, Brad and I were at Dante's bar watching the up and coming country play against the US and frankly ran circles around us. The group of us friends pretty much adopted the "Black Stars", not being racist just their nickname, as our favorite team. Earlier this year, Scott was lucky enough to go to Ghana for a close friends wedding and brought us all back jerseys from the top players on the Ghana national team. So if you get a chance, root on Ghana to have a good Cup. They are having to overcome not having a couple of their star players due to injury and are a dark horse but I will be cheering for them.

So for anybody out there remotely interested in soccer, who do you have winning the World Cup this year?

Chemo #10 + weight gain

Thanks to everyone who fed Garrett over the last two weeks, he gained 3 pounds!!! That's a big deal. Since his weight has been falling steadily for many months, every positive number is a relief. All his blood counts looked fine today and he got another dose of chemotherapy.

Good times

Garrett finished up his twenty-eighth year of life by enjoying time with family and lifelong friends during a fabulous vacation. It’s about time we get back to work, but I wanted to let you all know what a great time we’ve had on this break and how proud I am of Garrett for getting out and having fun even when his body doesn’t want to cooperate. We took in a great baseball game in person, a co-birthday bbq, dinners out, dinners in, catching up with friends and lots of time relaxing in or around the Jacuzzi. Sounds like easy stuff to do on vacation, but after all it has been through, Garrett’s body has a tough time just getting out of bed many days. Doing all these fun things is quite an accomplishment and I appreciate all the effort he puts in just to get out and have good times.

Another year calls and we’ll kick it off next Saturday at our annual Relay for Life fundraiser for the American Cancer Society. Thanks to all our friends and family who have made donations this year and in past years, if you haven’t checked it out yet our team is the 5th place raiser for our relay event and we’re really close to making our fundraising goal! Garrett’s body won’t let him do a lot of walking this year so if you are in Seattle and have time between 10am Saturday and 10am Sunday, come join us and walk a few laps on the track!

My Sister's Keeper

Written by Garrett, just too lazy to sign out of MaryEllen's account.

I know I am a year or two late on this movie coming out but we just watched it the other day while in Cali and I must say that I recommend this movie. I didn't think I was going to and thought it would kind of just patronize those with cancer but it actually did a good job showing not only what the disease does to the individual but also to the family and friends of those affected.

For those that aren't familiar "My Sister's Keeper" is a movie about a family with a teenage daughter that has had leukemia since she was a child. The parents at one point have what is basically a genetically engineered daughter that was used for things like bone marrow transplants and ultimately was intended to be used for a kidney transplant. The movie is basically about the physical, mental and moral issues that this family is going through. I know I have experienced a lot of the feelings they expressed the girl had throughout her ideal from sadness to guilt to joy. I don't want to ruin it for anyone intending to watch it so I will just say I thought it was a very well produced account of a cancer patients life. Sad, but very well done.

So basically, there is not really a point to this post, I just wanted to point out a good cancer related movie that I saw. For those that have seen it, I would love to know what you think.

Health Care Reform Summaries & Blogs

If you didn't already know, I believe health care reform is a good thing for all Americans' quality of life, including Garrett's and my own. But like most reform it is seriously complicated and has plenty of intrinsic flaws. If you have questions or fears about the changes the new law will bring when it goes into effect in 2014 (some of it sooner), there are now some legible summaries and fact sheets on the topic that can help us all to understand its strengths and weaknesses without political hype clouding fact.

Health care, like education, is something we all deserve to have access to. We will all pay for it of course, but I hope reform will be the first step toward more affordable care. If you want to know more check out these links and keep looking out for credible reports:

-Summary of the Patient Protection and Affordable Care Act (thankfully, only 13 pages long and in list form)

-Key changes to Medicare

-Impact on young adults

-An economists view on health reform, how other countries cover everyone & why mandating insurance makes the system more fair for people with diseases like aggressive cancers. Three great articles 1, 2 & 3

-Blog by a nonprofit health education organization