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.