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...

The Dash, By Linda Ellis

For those of you were moved by the poem The Dash at Tyler's memorial service, I have included a link to the author's website.  She has a beautiful slideshow and the complete poem listed at:  The Dash’s Dash

Sleep in Peace, Tyler Douglas Bledsoe

Tyler Douglas Bledsoe, beloved husband, son, brother, uncle and friend, passed away peacefully on Jan 6, 2011 after courageously fighting a four year battle with Leukemia.

He was born Oct 31, 1966 in Longview, WA to Scott Bledsoe and Andrea (Bledsoe) Coughlin. He grew up in Ballard, attending Crown Hill and Whittier elementary schools and Whitman Middle School, where he participated in Little and Major League Baseball and Soccer. He graduated from Ballard High School in 1984 with Honors, and participated in Varsity Baseball, Cross Country, and Soccer.  He attended Seattle University for one year, then transferred to the University of Washington, graduating in 1990 with a Bachelors Degree in Psychology.

He loved working outdoors with his hands, and made a career of creating beautiful landscapes. He worked for Olympic-Cascade Landscaping for 10 years, then joined the Seattle Children's Hospital Grounds & Sustainability Department, where he helped recreate the landscape you see there today as well as managed and maintained the facility at 70th and Sandpoint Way.

He was an outstanding athlete and continued playing soccer throughout his adult life, leading his teams to many victories by employing "THE MOVE". He also coached a girl's soccer team for several years, and was an avid fan and season ticket holder for the Sounders. He loved golf, both real and "fantasy", and enjoyed many rounds in the last four years with his father Scott, his father-in-law Dave, and his brother Matt.

Tyler had a passion for life. He was a man of great inner strength and displayed wisdom, stability, love, humor, kindness, sensitivity and fairness. He was fiercely competitive but had an even disposition, a generous spirit, and never ending patience and strength with medical challenges.

Tyler leaves behind his loving wife Mandy, his parents Scott and Kate Bledsoe and Andrea and John Coughlin, siblings Matt Bledsoe, Sam and Colleen Sundquist, and Elizabeth Gizzi, grandmothers Thelma Westberg and Marion Bledsoe.  He leaves behind many other loving family members, as well as countless friends. He touched many lives and will be greatly missed by all who had the honor of knowing and loving him.

Tyler's memorial service will be held on Saturday, Jan 15th at 1:00 pm, at North Creek Presbyterian Church - 621 164th Street SE - Mill Creek, WA 98012. All are welcome to come celebrate his life with us. Remembrances may be made in Tyler's honor to Team Firefly, our fundraising team for the Leukemia and Lymphoma Society.

The family wishes to express their heartfelt appreciation to the amazing doctors, nurses, and other staff who provided him such excellent care throughout his battle.

Gettin' By

My sister put a lovely post about Tyler's death on her blog. To read it yourself, go to http://rydmanfamily.blogspot.com/2011/01/goodbye-ty.html

I'm so very thankful to have family and friends around me! I know I am not doing a very good job of getting back to you, but I certainly appreciate the calls and e-mails and offers of company for a few hours. Gump headed to work over the weekend and I had an almost full day of work myself today and we both found that it is somewhat cathartic to get back to some of our regular activities.

I know that I didn't always share about our extended family, but we both have very close families. Tyler's brother lives with me, which helps to feel that I have a friend (and brother) very close by. I know that others have also been hard hit by this loss, but I have found a great deal of comfort in memories of him and the company of loved ones.

We are hoping to show a slideshow of photos from Tyler's life, but it is hard to choose which of the photos to include.

Memorial Service

Thank you so much for the outpouring of love and sympathy that everyone has sent our way today. It is easy for me to see that Tyler touched many, many lives in his 44 years.

We will be holding a memorial service for Tyler on Saturday, January 15th at 1pm.  Everyone is welcome to come celebrate his life with us.

North Creek Presbyterian Church
621 164th Street SE
Mill Creek, WA 98012

In lieu of flowers, donations may be made in Tyler's honor to http://pages.lightthenight.org/wa/SeattleL11/mbledsoe_LTN. Another way to honor Tyler would be to make an appointment to donate whole blood or platelets at your local blood bank or sign up for the Be the Match bone marrow registry.

Thank you so much for helping us to fight this battle for the last 4 years!

RIP Tyler

Tyler passed away at 6:25 this morning. I pray that he may finally rest in peace.

Still sleeping

Tyler has been sleeping since yesterday morning. Selfishly, I wish that he would wake up for just a little bit, but it doesn't feel right to withhold pain meds just to see if he will open his eyes again.

He definitely responds to discomfort or pain, as he mumbles and moans a lot when we turn him from side to side (to avoid pressure sores), but is basically unresponsive otherwise.

I have been reading the comments and e-mails and Facebook postings to him, just in case he can still hear us. It's hard to make decisions on which treatments he would want and which he would decline, which ones might by him a little more quality time and which ones might just make him more miserable.

Our families have been helping so much too. It's got to be so hard to see your child this sick, but they are here whenever we need them and are helping me to get through this.

Thanks for the prayers and encouragement, as we go through a particularly difficult part of the battle.

Had Enough

Tyler decided over the last couple of weeks that he has had enough suffering and did not want to pursue the option of a second transplant.  We have been working towards a hospice arrangement because Tyler does not want to be in the hospital when he dies.  With this newest infection, he may not get the choice, but we are still going to work towards that goal.

He showed an initial response to the antibiotics, but worsened significantly overnight again.  The doctors think that the fact that Tyler has gotten worse, while on the best possible antibiotic for the infection they found, suggests that the chance that he will survive this infection long enough to get home are very slim.  Certainly, without a functioning immune system, it is only a matter of time before an infection overtakes him.

We truly appreciate the many folks that have asked if they can come visit, but think it would be best if we limit to just the family for now. 

Anybody know a Good Plummer?

Unfortunately, Tyler had a very bad night last night. I spoke with the night doctor twice and felt like she essentially blew me off both times. That is always fun.

Anyways, Tyler's regular doctor came in just before 8 to take a look at Tyler and said that he thinks Ty is having renal failure, possibly due to the sepsis and low blood pressure or the leukemia itself. That answer makes much more sense to me that the night doctor's answer of "sometimes people are just more disoriented in the hospital". Grrr!

They are taking an ultrasound to get more information, but the symptoms of kidney failure are similar to what I have been seeing in him overnight. Hopefully they can figure out what is going on exactly and find a solution this morning. I hate seeing him in pain.

What is that stuff growing in there?

For the first time in all of the times that we have been coming in to UWMC "for a fever", something actually grew out of the blood cultures from Tyler.  So... the bad news is that Tyler DOES have a bacterial infection in his blood.  The good news is that he has already shown a large improvement since yesterday with the broad spectrum antibiotics and they will be able to fine tune his medications even more now that they know what he is fighting.

They are making plans to move him out of the ICU, now that his blood pressure has stabilized somewhat and his fevers seem to have broken for the last time.  Thank goodness for that!

The doctors hint that we might be able to go home again after a few more days without a fever, so we are hoping for tomorrow or the next day on that.

Sick as a Dog

Tyler has just been admitted to the ICU wing at UW to treat sepsis. His goal is still to get home as soon as possible, but he decided that he wanted to get treatment for whatever was hitting him today.

They beefed up his fluids, given him some IV antibiotics, and put him on oxygen. He does seem to be a little bit better, although he is still at very high risk. His blast count doubled in the last 24 hours which is a very bad sign.

We'll keep you updated on what happens.

Mandy

Blessings and Challenges

Simply put, Tyler is not doing well. His health has declined significantly over the last month and his energy level is nonexistent. He gets winded when he needs to get up to walk into another room, so you can imagine how he feels after climbing the stairs to our bedroom. It often takes him 15 minutes or more to recover from that exertion.

With that said, we are amazed at the goodness and generosity that we see in our friends and family. After I posted the message about getting a matched donor for Tyler, many of you have asked me if you could do that for Tyler. Thank you for being willing to help. The easiest way to see if your platelets would be a match for Ty is to donate at the Puget Sound Blood Bank. The doctors have submitted the paperwork to have the blood bank search for a community member who matches Tyler. I don't know all of the details about the matching process, but I do know that we have asked about a friend or family member donating directly to him and were told that having a loved one do that would significantly increase the cost because of the testing involved.

On the good side, Tyler has started a new medication designed to stop/slow internal bleeding. We have been having lots of trouble keeping platelets in him, but his black eye and bruised hand finally convinced a nurse to bring a doctor in to see Ty and they prescribed Amicar to help his body slow any bleeding down. the nurse that day was in shock because Tyler had dropped from 31 platelets (right after his transfusion) to 1 platelet when he was checked two hours later. I actually wasn't surprised because I had noticed that Tyler was always spitting up blood again by dinner time.

With the addition of the new medicine, his mouth sores have begun to heal and his bleeding has appeared to stop. Although he looks like a victim of spousal abuse, his eye actually looked better to me today too. It has taken on the really vivid purple that bruises get at their peak.

Many of our loved ones have been sick, so we just want to remind you to wash your hands often so that you can stay healthy yourself! We will need to avoid you until you are healthy, but please don't take it personally.

We wish each of you a happy and HEALTHY new year.