Reliving the Heartache

The holiday season has been a tough one for me.  Each day seems to be a reminder of what happened last year at this time and so much of that time was heart wrenching for me.  When everybody is celebrating the holidays with their families, I am reminded anew of the loss of Tyler and the giant space he filled in my life.

For me, New Year's Day was the start of the end.  Tyler had been getting daily transfusions of platelets since we got home from Houston, but couldn't seem to hold on to them at all.  They finally determined that he might be bleeding some internally (after seeing his hand swollen to 3 times its normal size) and prescribed a medication that he could take to slow down any internal leakage.  It actually seemed to be making a difference.

The doctors had already mentioned hospice to us and we were moving in the direction.  Tyler was very firm that he did not want to die in the hospital.  He'd already spent too much of his life there.  So when he spiked a fever on New Year's Day, he begged me not to call the doctors and report it.  We both knew that if I did, they would tell us that he needed to come into the hospital.

I did the best that I could to keep an eye on his fever overnight and urge him to drink water, but I didn't know that the reason they admitted him to the hospital at any sign of a fever was to get IV fluids into him and watch his blood pressure.  By morning, Tyler's blood pressure had fallen so low that he could barely walk and wasn't really cognizant of what was happening.  I was bustling around downstairs, packing a bag of stuff to get through the day, and waiting for him to come downstairs.  I finally ran upstairs to check on him and he was sitting on the bed in the dark, confused about what he was supposed to be doing.

The nurses were very concerned with his condition when I got him into SCCA.  They immediately started IV fluids at as high a rate as they could.  I called his dad and his mom and suggested that they come.  I was worried that he was going to die that very day and they wouldn't get a chance to say goodbye.

The doctors and nurses were urging Tyler to go to the hospital.  Based on his wishes, I kept saying no that Tyler did not want to go to the hospital.  Eventually though, I think they wore him down with their arguments and he agreed to go.  An ambulance took him from SCCA to UW and we moved into the ICU so that he could be closely monitored.

I'm thankful that he was awake for about a day and a half in the hospital and a couple of people did get to see him before he fell into his coma, but it was sure hard to not to have him there and awake for the last few days.  I have missed him greatly this year, but hope that he continues to watch over me and care for me.

With great sadness, I bid farewell to 2011.  In so many ways, it has been the most difficult year of my life.  People occasionally tell me that think I am strong from what they have observed of my walk in grief.  Please don't be misled by the fact that I am often private with my hurts and loneliness.  I would give absolutely everything I own or could hope to own to have Tyler back beside me and healthy.  I suspect, from the generous contributions my LLS fundraising has received, that many of you would chip in to help me if we could.

The best that I can do at this point is try to honor Tyler in the life I lead going forward, to put forth efforts to fight against the cancer that stole him away from us, and to remember that I was dearly loved by a great man.  I hope that some of you will take a fond memory into 2012 and think of Tyler in his "Love Life" t-shirt, quoting stats for any sport we wanted.  He would want each of us to make the most of our time together.

Live Every Moment!

Upcoming Fundraising Swap -- Everyone is invited!

I'm hosting my next Fundraising Swap on January 14th and wanted to invite you to join me!  If you've never been to a Swap, here is how it goes:

1) You bring a minimum donation of $15 payable to the Leukemia and Lymphoma Society or pay online in advance at http://bledsoebattle.com

2) Bring a bag (or two, or three) of all the media items that you don't know what to do with.  Please bring your items in good condition to share. Suggested items are: books, magazines, CD's, DVD's tapes, video games, records, computer games, etc.

3) We set out our goodies for everyone to shop through... one person's trash is another one's treasure. Take what you want, leave what you don't.

4) Show off your great bargains!  A $15 donation is a great deal for all of the great new items I have collected at previous swaps.

All of the proceeds are going to the Leukemia & Lymphoma Society.  Any items unclaimed at the end of the swap will be consigned to raise money for LLS or donated.

If you can not attend but still want to help, please feel free to make a donation of any media items or cash!  If you are able to attend, contact me for the rest of the details!  I hope to see you there.

Breaking the 1 Hour Barrier

This next week's long run will break the 1 hour run barrier for me, but I am feeling good about continuing to run longer and longer times each week. It has been rewarding to get out and do something positive a few nights (and one early morning) each week. I'm certainly not perfect in my training, but I am running almost regularly according to my schedule.  If you want to follow my progress in running and/or fundraising, you can visit my Madrid website at http://bledsoebattle.com

The training is all based on time of the run, rather than distance, which is much easier for me to track. Some days I run at a faster pace than others and cover more distance; some days I just don't feel up to pushing hard. I'm hovering around a pace that would be put me at a 5-6 hour finish for the marathon. I would really like to bump up my speed a bit so that I can finish in under 5 hours.

We are also approaching the 1 year anniversary of Tyler's death, so I am also reminded of many things from my life with him. Last Christmas we were in Houston until late on Christmas Even, when Tyler was released to fly home. I think the doctors knew that he was dying and were trying to help us get home so that we could be with our families.

One of the fundraising options that we have is to get a personal sponsorship to put someone's name actually on our jersey for race day. I have been thinking that it would be really special to do that in Tyler's memory. If you have someone special that you want to have named on my jersey, a $1000 donation can make it happen.

Thanks to my supporters for this great start! I have hit 1/4 of the way to my goal (even though some of the donations are still in the mail and not visible on my website yet). I have been selling my handmade greeting cards at work to raise money and would be happy to connect with others that want a few cards to send out. $2/card adds up and will go a long way towards fighting blood cancers!

Thanks again for all of the encouragement and support!

Huskies or Cougars?

I was invited to participate in a Team in Training (TNT) fundraiser over the long weekend and decided that it would be a great way to kick off my newest round of fundraising.  Now that I have reached my goal of raising $10,000 for the 2011 Light the Night walk, I have turned my attention to the work needed to get to the Madrid Marathon.

While my running practice is important (and I just started my 3rd week of regular training), Team in Training sets goals for us to make certain that the costs to send us to our event is never more than 25% of the amount I earn for LLS.  When I was invited to sell beads at the Apple Cup pregame, I decided to join in with 6 other ladies from this season's marathon group and sell my little heart out.

When all was said and done, we had raised almost $2500 from the generous Cougar and Husky fans in downtown Seattle.  Apparently, they could all agree that fighting cancer was a good cause (even if they couldn't agree on which team deserved to win more that day).

Each of us earned $325 for our races in one afternoon.  Thanks to the many supporters who helped us hit such a lofty amount and to the survivors I met during the day who reminded me of why I decided to keep fighting against cancers.

If you want to donate to my marathon fundraising, you can find my marathon page at http://pages.teamintraining.org/wa/madrid12/abledsomp0

Also, keep your eyes out for announcements of upcoming fundraisers.  I have a couple of swaps planned for January and February and would love to have both donations and shoppers!

Light the Night Awards ceremony

I was invited to a lovely evening at Theo Chocolates for the 2011 Light the Night awards ceremony.  Several members of Tyler's family were able to join me there, enjoying appetizers and wine and delicious chocolate.

After mingling for a while, they finally announced the individual and team totals for the year.  They started at the 10th place team and worked their way up to the top team for the year.

Drum roll please...

We won the first Tyler Bledsoe Memorial Award and will have our name forever engraved on a plaque honoring him.

 

Team Firefly had some amazing fundraising this year! We had double the next highest team with over $26,000 raised to fight cancer.   Thank you so much to everyone on the team that helped us capture this honor.  Despite the fact that Tyler wasn't there in person this year, I truly believe that a legacy has been created to honor him.

Way to go, from everyone who walked and helped with fundraising to the many donors that helped us get here! I certainly couldn't have done this on my own and I am so very thankful to everyone who helped me along the way.

Thank you all!!!

 

Happy Birthday, Tyler

My darling husband was born on Halloween, 45 years ago.  It was impossible not to spend time thinking about him today and yet I am not sure what to say.  I miss him.  He was such a great husband to me and friend to all that knew him.  I miss having him at home at the end of the day.  I miss him helping me keep my busy-ness in check.  I miss being able to cook dinner for him.  Fantasy football isn't the same without his addiction to statistics and his constant need to share the latest stat with me...  That barely scratches the surface, but I'm sad that we have to go on without him in our midst.

One of the things that bothers me is just how young he was when he died.  I guess they tell the truth when they say that cancer is equal opportunity.  I truly hope that we see a change in that during my lifetime.

Volunteers Needed with a Luau as a reward

The Leukemia and Lymphoma Society is hosting the Pineapple Classic on Saturday, November 12th.  They are in need of volunteers if anyone wants to see a fun event and finish the day off with an authentic Hawaiian Luau!  I hope to see you there!

This year’s event is on Saturday, November 12^th at the Mountain Meadows Farm in North Bend.  As you know, the Winter Pineapple Classic is a fun and festive 5k team adventure race where participants must navigate a series of obstacles and physical challenges.  The event concludes with an authentic Hawaiian Luau!

(Special note:  Volunteers will receive a free pass to the Luau and beer garden (21 and over) after completing their volunteer shift).

Here are Volunteer Opportunities for The Winter Pineapple Classic

November 11^th – At Road Runner Sports in Seattle

·         Pre-race Check-in – check in participants and give them packets.

November 12^th – Mountain Meadows Farm, North Bend

·         Information Booth & Media Escort – Help assist LLS staff in answering questions and escorting media when they arrive

·         Registration and Check-in Booth – hand out packets to participants and register new participants.

·         Wave Starter – gather participants according to start time using large placards. Walk teams to start line.

·         Finish Line – will remove timing chips from participants and hand out water.

·         Luau Ticket Sales – Sell Luau tickets and check wristbands for admission

·         Bouncy House – Need adults to monitor number of kids in bouncy house

·         Parking and Traffic Attendants – Need adults to assist venue attendants with parking control

·         The Green Team -  Make sure trash & recycling is placed in proper receptacles and help pick up trash

·         Course Monitors – Adults needed to make sure participants stay on course – we don’t want anyone to end up in Canada

·         Obstacle Monitors – Adults needed to ensure participants are completely obstacles safely

·         Food Tent – serve food (food handlers permit is required)

·         Beer Garden Bartenders – Help our Brewery serve beer (Must be 21 over and have bartending license)

·         Clean-up Crew – Help LLS staff clean up luau venue; we always need extra help  =)

·         Obstacle Course Tear Down Crew – this will be a physical task for you, but we will make it fun!

Please let Lauren Last ( (206) 957-4566 ) know what opportunities appeal to you and she would be happy to give you more details.

8GB iPod push

I'm ALMOST at my personal goal for the 2011 Light the Night walk, so I decided to see if I can get there with a little mini auction.  I was going to put an 8GB iPod Touch up for auction on eBay, but figured I should toss it out to my friends first.  Is anyone looking to purchase an iPod before the upcoming holidays?  This one is brand new and still in the unopened plastic case.  The SKU at Best Buy is 9225377 if you want to look it up.  It retails for $199.99 right now, but I will be donating the money from this sale to the LLS to try to hit my goal of $10,000 by the end of the month.

If you are interested, contact me.  I will consider all offers received between now and October 29th.

Also, purchases made at Amazon.com using the link to the left help us to raise money for the Bledsoe Battle as well.

Thanks for your continued support!



iPod details:
-----------------------------------
The most popular Apple iPod is now even better. Along with the revolutionary Multi-Touch interface and Wi-Fi Web browsing, the 8GB iPod touch now includes HD video recording, FaceTime camera and the highest resolution iPod screen ever. Plus, the new 8GB iPod touch Game Center enhances your game play. The 8GB iPod touch has a lithium-ion battery that lasts up to 40 hours with up to 7 hours of video playback. Store over 1,750 songs with your 8GB iPod touch and up to 10,000 digital photos or ten hours of video. The 8GB iPod touch also allows you to watch your favorite movies over and over again. Take your 8GB iPod touch to the gym or to the park. You'll never leave home without it.

Current 3rd- and 4th-generation iPod touch owners can receive a free software update to iOS 5 available through iTunes beginning October 12, 2011.

Product Features

• 8GB* internal flash memory stores up to 1,750 songs, up to 10,000 digital photos (iPod viewable photos transferred from iTunes), or up to 10 hours of video
• Multi-Touch interface, 3.5" widescreen display
• Built-in Wi-Fi lets you surf the Web, send e-mail, update your Facebook status, chat using AIM, and so much more (internet connection required)
• HD video recording
• Retina display - 4x pixels, 326 ppi, 24-bit color, LED

• Apple, the Apple logo and iTunes are trademarks of Apple Computer, Inc., registered in the U.S. and other countries. iPod is a trademark of Apple Computer, Inc.
• *Formatted capacity may vary. Results will vary based on file size and format, settings, features, software and other factors.

Taking the Next Step - Ole!

Yesterday morning, I agreed to do something that I never wanted to do. 

I've always liked running in races, but since I am not particularly good at training I like to keep my races to 5 miles or less (preferably less).  However, since the time that Tyler was diagnosed with Leukemia, I have been keeping my eye on the Team in Training (TNT) program offered by the Leukemia and Lymphoma Society.  This is their most visible fundraising program and their most successful after 22 years of helping people of all ages and abilities to compete in amazing events.

Yesterday morning, I signed up to run my very first marathon next spring... in MADRID, Spain!  I will be training with the coaches from LLS and going to practices with the rest of the participants, but would love to have some of my friends and family join me.  If you have ever wanted to run a marathon, I'd like to invite you to join me in Madrid next April.  I figured that if I wanted to make a statement in Tyler's honor, I should go big and make it in Europe!

Tyler loved running and was a cross country athlete in his school days, so I figured that a marathon was the best TNT event for me to choose.  I never wanted to run that far (and still think that people that do might be crazy), but I am excited for my newest adventure!  If anyone wants to head out for a run over the next 6 months, feel free to invite me along.  I think I'm going to need all of the help that I can get with my training!

Light the Night 2011

This year's Light the Night walk was amazing!  We had approximately 100 team members there to honor Tyler and all of our honored heroes.

The Roddy kids made a sign that said Team Firefly and "We miss you Tyler"

Ceci, Erin (days before giving birth), and Mandy

Our Top Team tent

Team Check In with Becky, Debbie, and Charlotte

The Team Firefly tent with many of our team members waiting for the walk to start.

Hans, Alex, and Yanni  (There are 2 survivors in this picture!!!)

Hans, Yanni, and John

Bill, Charlotte, Debbie, and Loraine

Loraine and Bill

The walk start -- with my Tyler Tshirt

The walk start -- see those balloons already lighting things up?

Kate and Colleen

Our walk starting line and an abundance of balloons

One of the best parts of the walk is seeing the balloons parade around the block

My inspiration

Chris, Emily, Kate, and Sam

2 Weeks to the Light the Night walk!

It is hard to believe that we are less than 2 weeks away from this year's Light the Night walk.  As of this morning we had 71 team members on Team Firefly, which is SO exciting!  If you haven't gotten signed up yet, you can join the team at http://pages.lightthenight.org/wa/SeattleL11/mbledsoe_LTN and click on "Walk with Us" at the top of the screen.

Our team has already raised over $12,000 which is fast approaching our total for last year ($16,602).  If we can stay in the top position, we will be the first team to earn the Tyler Bledsoe award for the top fundraising team.  I wonder if we can break last year's barrier before walk night...?

To meet my own fundraising goals, I am hosting another clothing swap on October 2nd at 2:00pm.  This one will feature women's clothing and accessories.  If you would like to join us at the swap, just let me know.  I'll make sure you get all of the details!  Other ways to participate (if you can't join us for the fun):
- Donate your own clothing and accessories
- Make a Yummy Dessert to share
- Invite your Friends to join us
- Donate to our team at http://pages.lightthenight.org/wa/SeattleL11/mbledsoe_LTN

I am looking forward to seeing many of you at the Light the Night walk on Saturday, September 24th.  The remembrance ceremony will start at 5pm, so I plan to be there by then to honor Tyler's memory.  Will you join me?

Light the Night T-Shirt

This year at the Light the Night walk, we will be encouraging all team members to wear their bright green memorial t-shirts.  More details about how to contact Scott to order the t-shirts is available at the original post: http://bledsoebattle.blogspot.com/2011/03/finishing-strong.html

Thanks for your support of this project!

Another Fundraising Swap - Next Sunday!

Next Sunday (August 28th) I am hosting another one of my fundraising swaps!  Anyone who wants to join in is welcome to attend, just contact me for complete details.  This one is swapping out kid's clothing and toys, with the hopes of helping each of you finish out your back to school shopping.

If you can't attend, but want to donate outgrown clothes or toys, I would be happy to connect with you during this next week to take any boxes or bags of stuff.

If you can't attend, but want to support the cause by making a monetary donation, please go to http://pages.lightthenight.org/wa/SeattleL11/mbledsoe_LTN to contribute.  I am almost halfway to my goal of raising $10,000 this year to fight cancer and appreciate the generosity of friends and family (and a few strangers) who are helping me to meet the goal.

Be the Match

In July, I got an e-mail acknowledging my anniversary from joining the National Bone Marrow registry.  In 2008, as Tyler was just beginning his path towards a bone marrow transplant, I went to my local blood bank and swabbed a Qtip from their registration kit around my mouth.  With a small donation ($47) and that Qtip, I promised to honor my commitment to donate my bone marrow to a person in need.

I have not been asked to donate, but hundreds of e-mails/letters are sent out every day to potential matches.  Even with all of that, there aren't quite enough of us on the list.  There is an especially great need for people with varied ethnic backgrounds, as the closer your heritage matches the person in need, the more likely you are to match their HLA combination.

With a few friends expecting little babies this year, I also want to mention that you can donate cord blood from your baby's birth.  Storing cord blood specifically for your own child's needs can be expensive, but donating it to the public bank increases the likelihood that you will be able help someone in need!

If you haven't joined the bone marrow registry, please think about doing so this month in memory of Tyler.  It is easy and you could give the gift of life to someone battling cancer!  Go to the Be the Match for complete details!

Golf Memories

Just a quick heads up...  Scott (Tyler's father) is organizing a golf tournament in Tyler's memory.  He has the complete details, but the date is Thursday, August 11th for those of you that want to participate.  Call Scott to reserve your spot.  If you need Scott's phone number, feel free to e-mail me or comment on the blog.

I hope that some of you can go swing a club in the tournament.

Light the Night Kick Off Cruise

Because Tyler is one of the honored patients this year, I was invited to share our story at the Light the Night kickoff cruise on Saturday, July 23rd.  It has been special to share our story with others who may not know the path we have taken, and hopefully my words have had an impact on someone and Tyler's spirit will continue to live on.

The cruise was scheduled for a day that turned out to be one of the most beautiful of the year!  We sailed around the Puget Sound on one of the Argosy ships.  I was joined by some other Team Firefly members who wanted to join in the fun and we all enjoyed the trip.

Our team was honored as the top fundraising team so far this year.  We've raised over $5000!  They actually read off the names of all of the Seattle area participants that have already raised over $100 and I was so thrilled to hear that 9 of our 45 team members have already become Champions for the Cure this year!  In fact, at dinner tonight, one of my friends said that she couldn't believe how easy it was to hit the $100 mark. She donated a little bit herself and then sent out one e-mail to a few friends.

Congratulations to our $100 Plus club members:
- Glenna and Jeff Stone: $377.98
- Charlotte Frank: $287.98
- Bonnie Rydman: $202.98
- Kirstine Whisler: $202.98
- Cabryn Taylor: $102.98
- Ceci Rozendaal: $102.98
- Pam Smith-Graham: $102.98
- Celeste McArthur: $102.98
- Kari Laib: $102.98
 
Thanks so much to each of you that have joined the team and started your fundraising!  I look forward to seeing as many people as I can at this year's walk.

The Exciting Light the Night news!

Recently, I was told that the local Leukemia and Lymphoma Society office plans to create an award to be given to the top fundraising team at the Seattle Light the Night walk AND they want to name the award after Tyler!  I would love for Team Firefly to be the first recipients of this award, so I ask that you join our team in fundraising this year if possible.

To see Tyler's Honored Patient story, you can go to:

http://image.lls-email.org/lib/fef915707d600d/m/1/Tyler+-+Story.pdf

Smiles out of my Camera

I wanted to download some pictures from my camera onto my computer today and was pleasantly surprised to find some of Tyler from our trips to Houston.  Since they made me smile, I thought I would share with you too.  He was a wonderful goofy man that filled my days with laughter, despite the tough circumstances he faced!

Attacking his breakfast in the cafeteria at MD Anderson in Houston.

 Notice the 2010 Light the Night t-shirt that he is wearing...  We were in Houston the week before and week after LTN last year, trying to get on the trial.  He finally made it on the week after the walk.  Maybe that is why he is smiling in this photo?

Tyler had a great deal of sensitivity to bright lights after his bout with shingles last summer, so he wore all sorts of hideous sunglasses to protect his eyes.  Here he is showing on his beverages at a mexican restaurant we went to in Houston. I actually think it might have been our last day there, but this picture really makes me remember how great his attitude was and how much fun we had together!

Doing More with Less

According to this article in a Washington State newspaper, our blood banks must do more with less in the summer months. They write that our blood bank collects about 20% less blood over the summer, but needs about 20% more to meet the needs of local patients.

http://www.heraldnet.com/article/20110705/OPINION01/707059999

Can you give blood today to help?  I actually did my best to give blood after work today (which involved heavy duty water drinking throughout the day), but found that the local donation site had closed by the time I got off work.  I'll try again in the next week and hope that you will join me.

6 months gone

It's hard for me to believe that 6 months have passed since Tyler lost his battle with leukemia.  He lives on in the stories we tell and the memories that we treasure.  Recently, I had the opportunity to spend some quality time with many of Tyler's childhood friends and was so thankful to hear them telling jokes about his cross country running prowess.  Apparently, Paul actually beat Tyler in a race and made sure to invite the media to the event.

Life certainly changes as time continues to march on, but I am doing well.  I am a little worried that I won't be able to get enough time in on the soccer field this summer, as my teams aren't playing enough or on the right nights.  :)  I am thankful for the continued friendship of the many friends that I made through Tyler, as well as the new friends that I am making now.  It is strange to restart your life again.

I read an amazing story several months ago about a woman who had lost her grandmother, an avid button collector.  From time to time she would find a button in a completely random place like the bathroom sink.  I thought that was an amazing story and, after much thought, I decided to give Tyler a song that he really loved and consistently made me think of him.  From time to time, I hear his song on the radio and remember that he loves me still. I was quite moved when his song played just before the craft swap a couple of weeks ago.  It felt like he was telling me that he was happy that I doing this fundraising (or maybe just happy that I was giving away some craft supplies).

Thanks to the many people who prayed for me and encouraged me, especially in the first few months when the pain was so much more sharp.

Giving Back

Earlier this spring, I was invited to participate in the Light the Night Executive Committee for the Seattle walk.  I was very honored to be invited to join with the LLS team in making this year's walk the best yet!

To kick off the 2011 Light the Night season, I was asked to speak at a Light the Night breakfast that they sponsored last Thursday.  I shared a little bit about our story and the battle that Tyler fought, along with why I am passionate about walking again this year.  LLS uses the money we raise to fund the best and brightest researchers in the world to FIND A CURE TO CANCER, so this year I am walking in the hopes that I can save someone else from losing their husband to a blood cancer. 

If you haven't had the opportunity to join us at a Light the Night walk, I hope you will think about it this year.  The walk is a truly beautiful and uplifting event.  You see both survivors and supporters joining together to fight cancer and honor the battles that are being fought every day.  People of all ages have made it around Greenlake with us.  In fact, last year we had team members aged 1 - 91!

Mark your calendars now for September 24th!  Tyler's is one of this year's honored patients, so it will be an extra special walk for everyone on our team.  If we are one of the top fundraising teams again this year, we will have an even bigger tent for our team and other extra perks!

In addition, I have some exciting news to share that will make you want to help me in making Team Firefly the #1 team for the second year in a row.  I've got plenty of ideas for how to raise money through donations and events, and just need a few good people to help carry out the ideas!  Stay tuned for my exciting news in a future post...

To join our team, you can go to http://pages.lightthenight.org/wa/SeattleL11/mbledsoe_LTN and click on "Walk with Us" at the top of the page.  We had 29 team members at last count, so I am hoping that we get a few more friends and family members to join us.

Feeling Crafty?

Next Sunday is the next in my series of fundraising swaps.  We will be raising money for the Leukemia and Lymphoma Society while trading around crafting supplies.  The swaps are fun and a great way to either clean out your house or pick up some great new supplies.  If you would like to participate, just contact me for complete details. 

Any craft supplies can be donated this week and anyone that wants to shop for new craft supplies can stop by next Sunday to see what is available.

See you then!

10 years of HOPE

10 years ago today, Gleevec was approved as a first line treatment for leukemia. What a revolutionary change that was! Targeted therapies have continued to be explored, allowing cancer to be attacked without significant toxicities to patients. Imagine how you would feel if you finally had HOPE again after a cancer diagnosis. That is what Gleevec did for so many!

http://www.cancer.gov/newscenter/pressreleases/2001/gleevecpressrelease

Read the original press release above.

Fabulous Friends and Finally Getting Away

One of the things that I had to put on hold while Tyler was sick was the ability to travel for fun.  This weekend I got to take a step forward again in my travels.  It was just a short road trip, but I truly enjoyed the opportunity to get away to the other side of the state to visit my friends, Andy and Amy, for the weekend.

As an added bonus to the great company I kept, this weekend was Spring Release in Walla Walla.  That means that I had the opportunity to taste some very good wines on Friday and Saturday.

Many thanks to Andy and Amy for letting me spend the weekend with them and get my traveling bug a little more active again.  I'm already looking forward to my next visit out to see them and their lovely little girl!

Swapped Out!

The home decor swap on Sunday was wonderful! There were many people that were excited about the opportunity to clean out their house, as well as find some great new treasures. I think that a few of the first timers were amazed at how quickly the stuff disappeared into "taken" piles. I got a great shelving unit and some holiday decorations, but I was trying really hard not to shop!

We also raised a couple hundred dollars for the leukemia and lymphoma Society and Team Firefly, so thanks to everyone who helped with that effort as well.

Our next swap is for craft items (on June 12th). It will be a great opportunity to clean out unused crafting supplies or find new items or a new hobby. If you would like to join us at the craft swap, please let me know.

Lamb Day

One of my friends invited several of us out to her mom's farm to see this year's lambs. I borrowed Rachel for the weekend to make sure I fit in with the rest of the parents that would be there. We started the morning with some tasty snacks, while Rachel got to know the other kids there. Everyone was surprised at how big she is getting!

After everyone had a chance to get a snack, we headed out to the barn to see the sheep. Rachel was all bundled up for a day at the farm with her jacket and boots, but she was very excited to see the "farm animals". She had been admiring the sheep through the windows while she had her snack.

The weather has been pretty rainy over the last 4 or 5 months, so the ground was plenty moist and there were several mud puddles for the kids to stomp through.

Rachel was starting to feel a little bit brave and inched towards the herd of sheep she saw, but they got spooked by some of the other kids that were chasing them so she wasn't able to get too close out in the field.

Once the sheep were up in the barn, she was actually brave enough to pet one of them. A couple of the adults caught lambs and would hold them so that the kids could get close and pet them, but Rachel decided not to risk it.

One of the highlights for her was getting to see cousin Mitch. He was dressed in camouflage for the outing so it was hard for me to see him, but Rachel has her father's hunting instincts and was able to pick him out easily.

Unfortunately, the mud got the better of her and she face planted in the biggest puddle that she could find. After she got her entire front covered in mud and whatever else the sheep drip out there, she lost some of her zest to chase after the sheep. Aunt Julie helped me to capture Rachel's feeling on the subject.

After enjoying the lambs and mud (and wearing their parents out), everyone trooped inside for pizza and fruit and tasty cookies. For some reason, every child had on different pants in the afternoon than they had in the morning! We changed Rachel's entire outfit, but Aunt Mandy forgot to bring a change of clothes for herself and got to stay muddy.


Thanks to the Jensen family for Lamb Day! We had so much fun!

Home Decor Swap

Don't forget that Sunday is the first Swap for a Cause this year!  If you have any home decor items that you want to donate (or were looking to shop for new items), contact me for more details.

The Big Climb

I am pleased to share that, despite my lack of posts in the last two weeks, I did indeed survive the Big Climb.  I think my love of playing soccer paid off well for climbing stairs, since I was able to use my soccer muscles to power up two steps at a time part of the way.  Then when I got tired, I would drop back to one step at a time.  The biggest challenge was that my heart was POUNDING from the exertion!  I think I might have to find a little bit more exercise to get my heart muscle into better shape if I try to do this again.

Just so you get the full picture of how crazy I was to join in the Big Climb, I thought I would post a picture of the building from where we started.  The stair climbers went from 8:30 in the morning through 5 or 6pm. 

They assign each of us to a 15 minute start time on one of two stairwells.  I opted for the non-racing stairwell and heard that it was the more friendly one!  Along the way in the stairwell, we saw signs honoring people affected by blood cancers.  It's quite a neat way to remind us of the cause and keep motivating the climbers to take another step.

When we finished all 1,311 steps (ACK!!), we were able to have a small post race snack in a room at the top of the tower.  Once I had recovered my vision (just kidding!), I enjoyed the view of the Puget Sound and thought that those with offices along that wall must get no work done because they are so busy enjoying the view of the waterfront and the water.

I was very thankful to be a member of Team Robel and participate in the climb this year.  Yanni Robel has been battling leukemia herself and has had to deal with several complications.  I am awed by her determination to keep fighting and look forward to welcoming her to our Light the Night walk this fall.  On her Big Climb bib, she wrote that she was walking in memory of Tyler and in honor of our CML friends.  While I wish that I knew them for some other reason, I am honored to be involved with this CML community!  There are some amazing people that we would not have met without the disease.

Although I wish Tyler could have been there in person, he was definitely there in spirit keeping me going up those stairs.

Swap for a Cause

I'm going to continue my Swap for a Cause theme this year and wanted to encourage each of you to join in.  I'll be hosting 4 swaps, with the proceeds going to the Light the Night walk.  Mark your calendar and start gathering stuff for each of the dates below:

• May 1st: Home Decor (artwork, kitchen gadgets, table linens, candles, etc)
• June 12th: Crafts (supplies for scrapbooking, jewelry making, stamping, knitting, quilting, etc)
• August 21st: Kids clothing (bring any clothing that your kids have outgrown and look for new things in the next larger size)
• October 2nd: Women's clothing and accessories (clothing, jewelry, gloves, hats, lotions, etc)

The more people that we can get participating, the better the selections will be, so use your spring cleaning time to set aside items that you can donate to the swaps above! 

If the dates above don't work for you, but you think that you and your friends might enjoy a fundraising swap like this, contact me.  I might be able to assist you in hosting the same swap on another day.

Also, I would love to find a BIGGER venue to host the swaps, so I would love to hear from you if you know of a warehouse or restaurant or community center that might be willing to host one of our swaps.

Thanks to all who supported the swaps last year.

Stairway to Heaven

This Sunday, I will be participating in the Big Climb at the Columbia Tower.  This is another one of the Leukemia and Lymphoma Society's great fundraising events and involves 6000 people climbing 69 flights of stairs in one of Seattle's tallest buildings.  It's the first time that I have participated in this particular event, so I am a little bit nervous about how much my legs will hurt after climbing 1,311 stairs.  They say that the top racers can finish in as little as 8 minutes, but I am pretty sure I will be way, way after that mark!

I'll start climbing around 12:45, so please send me a little virtual strength around that time if you can!

Blood Detectives Excerpt

Check out this link for a great video describing what happens in Leukemia patients, as well as the great advancement that was made by Gleevec.

http://www.hematology.org/Publications/Videos/5712.aspx

Finishing Strong

If you attended Tyler's memorial service, you may have heard that Scott (Tyler's father) was designing a t-shirt to sell as a fundraiser in Tyler's memory.  The shirts are in and I have posted a picture of the images on the shirt for you above.

They are bright green (like our beloved Sounders colors) and have a silhouetted image of Tyler running on the front.  The back of the t-shirt has a picture of Tyler with the quote "I have fought the good fight. I have finished the race. I have kept the faith."

If you would like to order a t-shirt, please contact Scott Bledsoe at (206) 546-2629.  If you can't call him, you may also try e-mailing him at mycaga@hotmail.com, but you will be more likely to catch him by phone.  He can provide you with all of the details about the shirt.

A Great Honor

I was recently asked if the Leukemia and Lymphoma Society could select Tyler to be an Honored Patient at this year's Light the Night walk.  The honored patient serves as the face of the mission and allows fundraisers and businesses to really understand the kinds of people that are touched by blood cancers.  Through my tears, I said that I would love to help Tyler inspire many more people to fight blood cancers!

More on this later, but I can't wait to see the walk brochure with his face on it!

Two Months today

I got a little teary-eyed this morning as I realized that it was the 2 month anniversary of Tyler's death.  He is missed by many people, I know.  I am doing okay.  I have been reading some books about grief recovery (thanks to those who gave such a thoughtful gift) and one of them has something that really resonated in my heart and I wanted to share it with you.

The book said that unresolved grief is often caused by a feeling that something should have been different, better, or more.  As I shared with a friend, the cancer diagnosis was in this one way a blessing for Tyler and me. We knew that our original dreams of growing old together would be challenged by this disease.  As he failed treatment after treatment, that became more of a reality for us each time.  Because we knew this fact, I was able to make choices to be with Tyler and really LIVE the life we could while I still had him.

While I do have a few regrets about things over the past 4 years (mostly that he had to fight cancer at all), I was able to be with him whenever he needed me.  I can never repay my coworkers and bosses for that time, as it is infinitely precious to me.  I spent most of the last month with Tyler and am so very thankful for that.  I flew with him to Houston and stayed until he got out of the hospital again.  I was with him as his health first started to fail seriously and during his last stay at UW.  I was holding him in my arms as he died and hope that helped to ease his transition.  It was (is) quite emotional for me to think about that final moment, but it was a sacred moment for me.

My purpose for sharing this is just to remind you to think about how your choices would be different if you learned that your loved one had only a limited amount of time left to be with you.  What changes would you make?  I certainly didn't quit my job and don't expect that any of you can afford to do that either.  But I surprised Tyler with tickets to a comedy show twice, just because I thought it would bring a smile to his face.  What can you do to make sure that you are not left feeling that you should have done something "different, better, or more" if you were to lose your husband or wife or parent or child tomorrow?

Do it TODAY!

Sending my Love

Four years ago today, I married my true love.  We knew on the day we said our vows that "in sickness and in health" already was a reality.  But, I demanded that Tyler marry me that day, whether he was released from the hospital or not.  He spent the week before the wedding at Stevens Hospital, recovering from pneumonia and getting his white blood cell counts down.  We canceled our honeymoon cruise, but still had the big party and officially joined our lives together.

Initially, we kept Tyler's diagnosis a secret from the many people coming to join us at our wedding.  We wanted our wedding day to be one of joy and celebration at the fact that we LOVED each other.  With apologies to the many loved ones who joined us there, I still think that was the right thing to do.  Our wedding day was filled with joy and love.

Tyler started to share the following week, which prompted a great deal of shock as people heard the word "cancer".

One of the things that amazed me over and over again as we fought this battle was the outpouring of support that we received.  We could never have fought this battle on our own, but had friends and family who went above and beyond to help.  People visited us in the hospital.  Coworkers from both of our jobs made it possible for us to visit doctors together, regardless of the impact to their own workload.  Friends and family helped us to raise thousands and thousands of dollars to fight this disease.

And through it all, we had each other.  When I stop and think about how much I have lost, I can't stop the tears.  Tyler loved me and knew that I loved him.  In that one fact, we were very, very lucky.  Although he often felt like he wasn't living up to what I needed in a husband, I would not have traded one day of our time for anyone else.

I would have happily sent the leukemia packing, but know that if I had to take CML to have the blessing of Tyler, it was well worth it for me.  I just hope that he believes me now.

Cancerversary

February 19th is the 4th anniversary of Tyler's diagnosis with Leukemia.  Especially now, I can't help but wonder if getting in to the doctor earlier might have helped him enjoy marriage a little bit longer...  Tyler had been experiencing several symptoms that, in retrospect, we now know were signs that something was wrong.  Number one in my memory were the chills that he got after exertion.  Because Tyler and I were soccer addicts, we were out on the soccer field 1-2 times each week.  For the 6 month period before diagnosis, Tyler would play soccer and then shake and shiver violently for a long time afterwords.  Tyler just thought it was a part of getting old, but I thought it was a bad sign.

If you have any of the following symptoms, please make an appointment with your doctor.  It probably ISN'T leukemia, but wouldn't you rather know?

• Fever or chills
• Persistent fatigue, weakness
• Frequent infections
• Losing weight without trying
• Swollen lymph nodes, enlarged liver or spleen
• Easy bleeding or bruising
• Tiny red spots in your skin (petechiae)
• Excessive sweating, especially at night
• Bone pain or tenderness

 Who knows where we would be today if we had caught the disease earlier?

Missing my "Dude"

This is the one month anniversary of Tyler's death. 

It's still hard to believe that he is gone, although I feel like I have been learning to live without him a little bit each day.  Some things are definitely easier than others.  Working is usually okay, as I am incredibly busy just keeping up with my day to day tasks. The quiet moments and home routines are the hardest ones, as those were times that I treasured with Tyler.  I miss our personal routines and the little inside jokes that we shared.

A loved one recently admitted that she didn't know if she should bring up Tyler's death when she sees me or avoid mentioning it altogether.  I can't speak for everyone that is grieving, but I prefer it when someone brings it up.  I might be sad or have some tears, but will change the subject if I get too uncomfortable to talk about it.

Also, there isn't a right thing to say to someone who is grieving.  A heartfelt "I'm sorry" or a comment about some way that Tyler touched your life is the most comforting things that people say to me.   I don't have any right things to say in response either, but do appreciate that people care enough to acknowledge Tyler's passing and the void in my life. 

Thanks to the many people who have supported me throughout this battle, and especialy over the last month.  The many offers for evening activities have helped me ease into this new phase of my life.

Missing the "We"

One of the really great thing about being married to Tyler was that we had a solid partnership.  As I make this transition, I find myself saying "We like this" or "We do that" and then I stop and realize that I am supposed to just talk about me now. It's strange to realize that two really did become one in our marriage.

Many people may not realize the work that Tyler and I put into our marriage before we ever walked down the aisle.  As we were first dating, I admitted that I had trouble communicating.  Although I have learned LOTS from my darling husband (who would share anything with anybody), I still struggle to share some of my innermost feelings.  In order to build a solid foundation of communication, Tyler and I decided to learn more about how to communicate better.  We read The 5 Love Languages: The Secret to Love That Lasts
and found that understanding the concepts in the book really helped us to communicate better about our relationship needs.  Tyler's primary language was Quality Time, so he just needed to remind me of that when I would get too busy with other things.

The other book that we used to develop our communication and highly recommend to other couples was The Hard Questions: 100 Questions to Ask Before You Say I Do.  This book had questions on all sorts of topics, such as what is your dream house like and how many kids do you want and how do you feel about religion, and anything else that could be helpful to discuss.  Tyler and I would answer all of the questions in a chapter independently and then get together and talk about our answers. We were lucky in that so many of our answers matched the other person's, but we also found ways to understand what was important to each other as we worked through the chapters.  This book certainly isn't for everybody, but I do recommend to anyone who wants to work on comunication or wants to go the extra mile to build a strong partnership.

Just my two cents on something that really worked for us!

I miss Tyler in little twinges throughout each day.  For example, it has been hard to watch American Idol this year because that was something that Tyler LOVED to watch.  We have a DVR, but Tyler could never wait to start the show late. He was just so excited to hear the songs and see the performance. 

I hope that each of you will hug your loved one today, just remembering that things would be much different if they were missing from your life.

We're #1! We're #1!

I recently attended an awards ceremony for the Light the Night walk.  It was bittersweet, as Tyler was in my thoughts all evening long, but I wanted to share some news with everyone who walked with us last year.

Team Firefly was the #1 team for 2010!  Thank you so much for all who walked, those who raised money to find a cure, and those who donated so generously.  Together we raised over $17,000 for the Leukemia and Lymphoma Society to fulfill its mission of finding a cure for cancer.

Although we haven't found a cure for blood cancers yet, I believe that our efforts will help someone in the future be able to avoid the pain that we are all living with today.  In fact, the CML'ers I know that are on Gleevec and Ponatnib are doing well today because of the research dollars in past years.

In fiscal year 2010 approximately $72 million was invested in research, including funding for 103 new grants to researchers in academic institutions and $8 million in contracts through the LLS Therapy Acceleration Program. As of June 2010, LLS was supporting 347 research projects and 9 research contracts in the U.S., Canada, and 9 other countries.

Thanks for joining me in my efforts to find a cure.  I don't want any of us to feel the pain of losing a friend, a child, a parent, or a spouse to Leukemia ever again.

A Picture is Worth a Thousand Words

Hans, who compiled the amazing slide show you saw at Tyler's memorial service, has graciously offered to provide copies to friends and family who wanted a copy for themselves. If you would like to get a CD with the slide show on it, please comment and/or send me an e-mail.

How rare is CML?

How rare is CML? Recently released data from the National Cancer Institute states the following: Based on rates from 2005-2007, 0.16% of men and women born today will be diagnosed with CML at some time during their lifetime. This number can also be expressed as 1 in 635 men and women will be diagnosed with CML during their lifetime.

How is it possible that 2 men on my soccer team were diagnosed with it?  It just seems like something is wrong there...