LAST WEEK TO DONATE

Im pretty lame when it comes to asking others for donations, etc..., but I would like to send out one last reminder for those that havn't already donated to Light the Night this year. More specifically to our Team Firefly. I believe there is a link here on this website where you can make a donation, and we are hoping to get closer to our goal for this year. It is very tough economically for everyone, but we still need to ask. If you cant donate, and would like to join us next saturday at Greenlake that would also be appreciated. We understand for all that cant do either. For those that do want to walk this year, we are all wearing white tops so we can look like a "team". The walk usually starts around 7pm, but there will be other stuff going on before that. I think things start around 4-5pm.

This cause (curing cancer/blood disorders) is obviously very important to me, considering I wouldnt be here if it wasnt for the research and advancements done over the years with donations to this cause! Help us save some more lives, not just for me or for today......but for all of those that will need it in the future.

Tyler

Waiting Game

Tyler survived a marathon doctor's appointment at SCCA, but overall it was a good thing. They confirmed that he does have GVHD, but are waiting on the results of a pulmonary (lung) function test he took in the afternoon. I ended up being sick on Tuesday and couldn't join Tyler at his appointments, but I hear he tracked down many of the staff members that we interacted with over the last year. The people were definitely the very BEST part of our time at SCCA!

Tyler's mom was also in town for the day, so she was able to drive him home after his appointments and catch up the latest and greatest. She made me realize that some of the improvements that I take for granted now should be shared with those of you who have joined us on this journey.

- Tyler is now walking without his brace about 90% of the time. He was getting stronger with the physical therapy, but decided in August(?) to try going without the brace more and more often. He's now golfing without and credits his best score ever (a 74!) with the ability to rotate his ankle again!

- He got his 1st Post Transplant hair cut and is looking really good (especially on the days when he shaves)! I promise to post a picture soon.

- He's able to eat anything he wants, as the end of his immunosuppressant drugs (Tacrolimus) means the end of a restricted diet! Bring on the blue cheese!

- He still isn't back to work, but considers it occasionally. He's been working to build up his strength and endurance so that he can resume his job as soon as possible. There are some concerns that the nature of his job (groundskeeping) may pose risks beyond just the physical toll, so we're doing what we can to consider all work options.

Back to Where it Began

When Tyler had his checkup with Dr. McGee last week, he mentioned that he was having some mouth soreness. They called SCCA, who requested some photos of Tyler's mouth. It appears that he is finally showing a few more signs of Graft-vs-Host Disease (GVHD) which is a mixed blessing for us. Some GVHD reduces the risk of a leukemia relapse, but it also carries a risk of damage to his organs (if left unchecked).

The end result is that we are headed back to SCCA to meet with their long term follow up team on Tuesday. Hopefully this is just a one time appointment, but we'll likely learn more when we get down there.

Other than the mouth sores, Tyler continues to thrive. He is building up his strength and relearning skills he had lost (like how to fill the dishwasher).

Updates on Others

We were quite saddened to see that a fellow transplant patient that we followed via his mother's blog just passed away from complications with his transplant. It really brings home to me how different our experience could have been. Nick was in the hospital for about 60 days with significant breathing difficulties and signs of leukemia in his spinal fluid. We are praying for comfort for his loved ones as they grieve for him.

While our road to the transplant was incredibly painful and tested our strength significantly, the post transplant challenges have been mild in comparison. I was incredibly nervous that no search was made to find a perfect match for Tyler, but they kept insisting that his protocol (the specific transplant instructions) wouldn't need a perfect match. It appears our doctors were right!

In addition, I wonder if they have found a transplant method that might work well for others with fewer post transplant complications. I would be interested to find out the results of the study and whether or not the other patients had similar results. We did see one lady on the same protocol while in UW Hospital before Christmas, but I don't really know much else about her progress. Also, we don't really know anything about the long term results of this transplant. Relapse is a risk for all transplant patients, but they were specifically testing whether or not the radiolabeled antibody injected before the transplant would decrease the risk of relapse.

Our friend, Hans, is doing well on Sprycel. All of his blood stats seem to be lower on Sprycel (as compared to Gleevec), but I actually wonder if this might be a good thing. If the Sprycel was having an effect on his blood making ability, wouldn't it make sense that all of his blood making abilities would be affected? If you wouldn't mind saying a prayer or two for him, we would appreciate it. We are hoping that he will achieve remission on this drug and be able to stay in maintenance mode for many years.

Light the Night

Tyler and I are again raising money for the Leukemia and Lymphoma Society through the Light the Night walk. This year's walk is scheduled for Saturday, September 26th and is certain to be a fabulous event again. This will be our 3rd year of participating and I am hoping to make it our best year yet!

If you would like to join our team and walk with us, please go to http://pages.lightthenight.org/wa/SeattleL09/TeamFirefly and click Join at the bottom.

If you would like to donate to our team, please click http://pages.lightthenight.org/wa/SeattleL09/mbledsoe_LTN

Thank you so much for your continued support!

Fiesta in Chelan

My side of the family held a week long reunion at Lake Chelan, thanks to my grandparents' generosity. I wish I could have spent more time with my family, but I thoroughly enjoyed every minute that I could steal away!

One family brought mustaches for us to wear during Mexican Fiesta night and Tyler and I are proudly modeling ours in the photo. I'm thinking we should both grow real mustaches after seeing how dashing we look with our taped on version. Actually, you can't see how much hair Tyler has grown over the past few months, but he is looking pretty sharp again.

There were 4 babies born into our family in the last year and it was a beautiful thing to get to see them becoming more like little kids and less like little babies. All of the kids (including the older Mia, Abbie, and James) inject so much life into family gatherings... I hadn't realized how boring I had gotten as an adult until I got to start playing with kids again.

Several months ago I posted a picture of me feeding my cousin's daughter, Audrie. You can see the original photo here.

Audrie today looks like this:



Isn't she adorable?? She was a charming little girl, filled with smiles! I think she could steal Tyler away from me, if she was just a year or two older!

As you can see from the lack of posts, life is incredibly good for us these days! Tyler is starting to do more exercise without his foot brace and notices increased movement in his foot. The photosensitivity in his eyes is much improved, so he finds it easier to be outside on sunny days again. He looks FANTASTIC and we are just so very thankful that we have come through this journey with his health coming back. Many thanks for traveling this road with us!!

Joining Two of our Passions

From the Sounders Blog:

The Sounders FC invites fans to take part in the Sounders FC Bone Marrow Drive. The Sounders FC have teamed up with defender Tyrone Marshall in an effort to support Marcia Williams’ battle with cancer. Marshall and some of his teammates will host the Sounders FC Bone Marrow Drive at Qwest Field on Aug. 18 from 4-7 p.m.

Marcia is the wife of Real Salt Lake’s Andy Williams, a close friend of Tyrone.

“I’ve known Marcia, Andy’s wife, since Miami in 2000/2001, so we have gone back awhile. It’s a tough feeling to know someone that close who is struggling with a life-threatening illness,” said Marshall.

Fans can help by attending the drive on August 18th and joining the National Bone Marrow Registry, a very quick and easy process.

“A lot of people think they are going to be stuck by a needle, however it is just a little swab in your mouth and it is easy. In addition to filling out some paperwork, the cheek swab won’t take more than two or three minutes. “

Patients are more likely to find a compatible donor within their own racial and ethnic background, which is why Puget Sound Blood Center is requesting a diverse group of donors. Currently the national registry for bone marrow is 75% Caucasian.

For information on Marcia’s fight visit soccerunitesutah.com and for information on joining the National Bone Marrow Registry visit www.psbc.org.

Parking will be complimentary in the north parking lot.

Be the Match

You can save a life! Watch the video to see how...

Strike Out Leukemia!

Strike Out Leukemia Night
Angels vs. Mariners
Wednesday, September 2, 2009 - 3:40 p.m.

Enjoy a summer afternoon at Safeco Field while supporting a great cause! Catch the Mariners at a discounted price, exclusive to you through this online offer. A portion of the proceeds from tickets purchased through this special offer will benefit The Leukemia & Lymphoma Society. Tickets can be purchased online and credited towards our Team Firefly fundraising for Light the Night!


DEADLINE TO PURCHASE: Monday, August 31 at 5:00 p.m.

Game Date:
• Wednesday, September 2 vs. Los Angeles Angels - 3:40 p.m.

Pricing:
• $15 View Reserved (normally $20)
• $32 Field Level Seating (normally $40)
• $7 from each ticket sold benefits The Leukemia & Lymphoma Society!


***Special Note for our Friends and Family***
In order to credit Team Firefly's fundraising efforts, you must send an email with the subject: MARINERS NIGHT to wilma.comenat@lls.org with the following information:

1. Ticket purchaser name
2. Number of tickets purchased
3. Participant name you want credited (Mandy Bledsoe or your name if you are participating)
4. Light the Night: Team Firefly

Thank You Novartis!

At his last doctor's visit, Tyler learned about a great program sponsored by Novartis, the manufacturer of both Gleevec and Tasigna. Apparently the company will actually cover some of the copay's for the next few months. While the copay is only $35 per month (thank goodness for medical insurance!!), we are still happy to have someone else pick up the bill for a few months.

Many of our readers may know someone else touched by blood cancers. If your friends/family are taking Gleevec or Tasigna, you might have them look into this copay assistance program too.