I am sorry to report that my results are a mixed bag at this point. My doctor is apparently on vacation this week in Montana, and they havnt been able to get him on email to look at the results. My main nurse has talked to me briefly about my results, telling me that one of the markers on my test had improved, and a couple others had remained the same. From what I heard from our conversation is that I have improved since my last test, but we arent sure if its enough for me to advance to the next stage of remission.

The conclusion from my conversation with her is that we will need to wait to hear from Dr. McGee before I will know if I am able to do my bone marrow aspiration next wednesday. I may find out later today or possibly monday.

Tyler

Thanks for asking about Tyler's test results last week. They took an extra tube of blood from him at his doctor's visit on August 27th, but we are still waiting on the results of the BCR-Abl test.

We have a bone marrow aspiration tentatively scheduled for September 12th, but will try to post results to the blog as soon as we have them.

By the way, we are requesting a Gold Balloon to carry in honor of Cathy Frank. Thanks, Bill, for sharing your story with me. We're proud to be able to honor your daughter with a special balloon for those lost to the disease!

Thanks so much for all of your support!

Mandy

It seems Tyler took a turn for the worse last week and we don't know exactly why. His congestion returned and his energy took a downturn. We talked to his nurse on Friday and found out a few more medications that he could take for relief. Also, she said that even though he only took 5 days of antibiotics, the medicine would stay in his system for 10 days.

But after a rough weekend, he called the doctor again today and got wedged into their schedule. First, they asked him to stop and get a chest X-ray on the way in. Unfortunately, the X-ray didn't help them determine what was happening exactly.

At this point, the doctor's best guess is that he'll continue to fight this infection and feel better. If his coughing continues to get clearer and less often, than we are good. If he is feeling any worse, we have to go back in for a CT Scan to rule out a blood clot in his lungs.

We'll let you know when we find out something more.

Mandy

It's been a rough week for both of us. I woke up with a bad cold last Wednesday. I was feeling bad enough that I actually left work early and went home and climbed into bed. Tyler caught my cold (I think) by Saturday and just got worse and worse. It was reminiscent of the pneumonia he had just before the wedding. Tyler spent most of Sunday and Monday sleeping, which is very unlike him. He was also running a fever, so we called Dr. M's office on Monday morning and Tyler got a prescription for antibiotics.

On the third day of antibiotics he was feeling well enough to go back to work. When I checked with him this morning, he said he was better today. He still sounds congested, so that I don't recognize his voice on the phone, but he isn't coughing quite as much anymore.

It does make us a little bit nervous. We don't really know what medications he can take while on Gleevec, so it is tough to give him relief from his symptoms. They approved Tylenol for aches and pains, but we'll have to keep researching to find out what else he can take.

Tyler now promises to stay far away from me the next time I sick. I don't think he wants to go through this again. I guess that means I will have to take extra care with my health now too, so that I don't put either one of us at increased risk.

On a much more positive front, our friends Mark and Vicki just gave birth to their first child. We would like to officially welcome Collin to the world and we're hoping to be able to meet him in person soon.

That's the latest from our house...

Mandy

Our visit with Dr. M on Tuesday was as anticlimatic as it could get! The machine they use to test Tyler's blood was broken, so we don't even know what his test results were this month. Probably the best news we got at the doctor's office was that at Tyler's 6 month checkup (next month), they will again test his BCR-abl level to see how much progress he has made. They expect that his blood will be negative for the bad chromosome and that we will have to progress to bone marrow tests.

We finally got our team set up for Light the Night, so you can now join Team Firefly at www.lightthenight.org. Thanks to those of you who have generously supported me already! I appreciate it more than I can say!

We are off to Bellingham for the weekend to abuse our bodies in another soccer tournament -- wish us luck!

Mandy

In Need of Names

Hey all!

I am completely stalled on what to name our Light the Night Team and need to ask for your ideas.

Dad suggested Leukemia Skywalkers, which is pretty darn good. I was thinking along the lines of Tyler's Trekkers, but it doesn't have the ring that Dad's does. Do you have any ideas? If so, please post a comment on this message. Tyler and I will pick our favorite team name from all of the ideas we get.

Thanks!

Mandy

It's hard to believe that most of July has passed with very little notice. We're due back at Dr. M's office next week for our next blood test update, but I don't expect anything too exciting there. Tyler continues to play soccer (and is looking better and better on the field). He's on a bit of a scoring trend here where he tells me that he might be too old to play and then scores a goal to emphasize the point. I'm not sure I get what he is saying yet...

I'm headed to Denver for my annual Stampin' Up! convention. I am looking forward to some fun stamping there and the chance to see some college friends who moved over there, but it seems like it is approaching too rapidly. I'd like to organize a few swaps to take with me, but my order of new catalog stuff just came in today. We'll see if I get extremely organized over the next week.

I've got my Light the Night registration in the system, but haven't gotten any confirmation on our request for a team. Tyler voted that we should be called Team Firefly. We had seen a performance from Faith Hill with her new song Firefly and thought it was appropriate. It's all about believing in your dreams and following your heart. We thought it worked both for "Light the Night" and for our thoughts on the song we heard.

I'm off to spend the weekend celebrating with my cousin, Nicole, a bride-to-be! See you soon!
Mandy

We had another appointment with Dr. McGee on Tuesday this week and are pleased to say that Tyler's blood counts are still in the normal range. In fact, the doctor is so pleased with Tyler's progress that we don't have a blood draw or doctor's appointment for a month. While we enjoy all of the wonderful people at our doctor's office, it is nice to be free of the commitment to stop in there every two weeks.

One thing that I found particularly interesting at this visit was Dr. McGee's discussion of the Generation 2 and 3 drugs for CML. While Tyler is responding very well to Gleevec, the drug companies are racing to come out with better and better drugs for this disease. They are currently running clinical trials on the Generation 2 drugs and finding that they work well for folks who were not responsive to Gleevec. As time goes by, we may see patients who have been responsive to Gleevec switching to the newer drugs. While the doctor didn't give us a specific time frame for when he might be making a decision for Tyler to make the switch, he seemed to indicate that it was indeed something we might expect in the next few years. It's hard for me to believe that another drug would be even better for Tyler. He's responded so well to this one and has had so few side effects, that I am hard pressed to imagine a less invasive drug.

On another note, we are thinking about starting a team for Light the Night -- a fundraiser for the Leukemia and Lymphoma society. Anyone can participate in the walk or by offering donations. If you don't receive an invitation in the next few weeks and are interested in participating or contributing, please contact either one of us.

I think we'll be participating in the Greenlake walk on September 15th, but Washington has walks organized in Tulalip (Sept 15), Olympia (Oct 6), and Tacoma (Oct 6). If you live in another state and want to walk, we can look up a walk in your area for you to join and still have you on our team! The walks start at 7pm, with registration an hour before that. The course is about 2.5-3 miles on a flat stretch, so you can be at any fitness level and still participate. Keep your eyes out for more information!

If you already know that you want to participate, please feel free to post a comment on the blog. It'll be fun for us to see that someone actually reads this!!

Thanks,

Mandy

Happy Father's Day!

We just wanted to send a big thank you out to the fathers in both of our lives! We have been blessed to be introduced to sports by our fathers and both of us developed a life long love of soccer due to that influence. Each of you (Dave, Scott, John, J.B., Jim, Chuck, and Andy) have helped to shape us into the people we are now -- and we think you did a darn good job!
Thank you!

Hello everyone, it is now June and things keep getting better every day! Earlier this week I had an ultrasound on my spleen to see if it had returned to its normal size. I received a call from the doctor yesterday and was told it had indeed returned to normal. This means that I can be active without worrying about damaging/puncturing my spleen.

I was able to join the soccer team last night for the first time since last november for outdoor soccer. It was such a great feeling to be out on the field again! I was able to play most of the game without getting too tired, but had to take several water breaks.

Work is also much better for me as my energy has increased steadily, and I feel I am getting close to 100% again. The chemotherapy medicine they are treating me with has been so amazing for me. Not only is it searching out and destroying the mechanism in my body that creates the "bad" white blood cells, but I feel better than I have in probably two years! I have minimal side effects with this medicine also, which is lucky because many people do have problems with side effects including nausea.

I have so many things to be thankful for, including all of you that have prayed for me, thought about me, and helped me get through this initial part of my battle with this cancer. I am so thankful to have Mandy in my life as she keeps me grounded and always looking forward to each day!

Take care,

Tyler