Test Results Update

Tyler got a blood draw today and called me to let me know his vital statistics.

WBC: 3.4
RBC: 32.1
PLT: 179

Debbie (our fabulous oncology nurse) says that they are a little bit concerned about the fact that his Red Blood Cells dropped again this week, but they will keep him at the 80mg dose for one more week to see. Luckily, we have a bye from soccer this week, so we don't have to worry about him playing soccer while anemic.

In other news, this weekend is the 84th Annual Garden Sale at Children's Hospital. You can get complete details at the Foundation website, but the basics are that you can buy all sorts of greenery on Saturday and Sunday, April 26 and 27, 9 a.m. to 5 p.m. at Children’s Administrative Offices, 70th & Sand Point Way, Seattle. If you happen to be going to the sale, check out Tyler's handiwork -- the sale is being held at the site he manages!

Looking for a Few Good Men...

and women...
and children...

We are forming our Light the Night team for this year's fundraising walk and we would LOVE to have you join us! Last year, Team Firefly raised $4772 for the Leukemia and Lymphoma Society. With your help, we hope to beat that total this year.

You can get more details at the official site but the basics are as follows: Our team meets for a walk around Greenlake the evening of Saturday, September 20th. Each registered participant carries an illuminated balloon and helps with the fundraising as much as possible. With only $100 in fundraising, each participant gets a Light the Night t-shirt and fundraising can be as simple as sending an e-mail to friends, family, and coworkers. We would appreciate your help raising funds that may help to fund a cure for Tyler!

To join the team, you can go to the website to register for the walk. Click "Join Team" and search for Team Firefly. If you prefer, you can send me your name, address, e-mail, and t-shirt size. I will get you registered for the walk.

Thanks to all who are willing to help us in our quest!

Watch your mailbox for the LLS Newsletter

We were invited to share our story with the local Leukemia and Lymphoma Society folks for publication in their newsletter. Just wanted to give you a heads up, so you can watch for our story in an upcoming newsletter.

The First "First Pitch"

On Monday, I was treated to the opportunity of a lifetime, thanks to my sister Julie. She works at BECU and had entered an employee raffle for the opportunity to throw out the first pitch at the Mariners Game against the Royals. Lucky gal that she is, she actually WON the raffle! She decided she didn't want that many eyes on her at once, so she gave her husband Jeff the right to throw out the pitch.

She also invited me and her friend Dani to join them down on the field for the pitch. So we wandered around down on the field for about 45 minutes before they were ready for the pitch. Our Mariners escort kept telling us stories about the guy who ran into the dugout (although that is against the rules) and stole a baseball. I think he was trying to keep us in line.

Jeff was given the option of throwing to a ball girl or to one of our group. Because Dani is a diehard softball player and Mariner fan, we nominated her to catch for him. Jeff threw a little bit high, but Dani was able to bring the pitch down. You can see the video we took of the first First Pitch at Dani's blog. After throwing the pitch, Jeff did a cartwheel to get back to homeplate. His cartwheel was pretty sad, so you should give him some pointers the next time you see Jeff.

As we were leaving the field, I was extremely disappointed to hear that they were having another first pitch. What is the world coming to when you have TWO first pitches before the ballgame?

Julie's work had also provided fabulous seats for the game, so we were able to enjoy the M's loss that night from only 20 rows behind the Mariner's dugout. What a night!!

Golf addict?

Inspired by the Masters Tournament, Tyler, Gump, Scott, and Dave headed out for a day of golf up in Snoqualmie. With the lovely weather on Friday, they were inspired to keep going after their round was finished and ended up playing 36 holes of golf. Tyler then rushed off to a coed soccer game, where he played on the field for the whole game for the first time since last summer. Needless to say, he was a bit worn out by the end of the day. I don't know exactly where he gets all of the energy, but I'm delighted that he is feeling so good.

We hope that you are enjoying the beautiful sunshine and that we get a chance to see you soon!

Mandy

Weekly Counts and Soccer Update

Tyler's counts held steady again this week, so we were pleased with that. The doctor seemed to want to raise Ty's Sprycel dosage, but didn't want to put him into an anemic state. So for now, he stays at 80mg per day of the Sprycel.

WBC: 3.8
HCT: 34.8
PLT: 189

Tyler was given a slightly longer leash too. He now has 2 weeks of blood draws only and then a doctor appointment on 4/30. Hopefully his longer leash is a good one and he feels good the whole time!

One side note that we haven't mentioned earlier... Tyler was officially released to play soccer in time for our first Spring Season game on March 28th. He showed off "the move" more than once and burned the opponent every time.

Tour of Fred Hutch Research Facilities

Tyler and I were invited to a Behind the Scenes tour of the Fred Hutchinson Cancer Research Tour as part of our work with the Leukemia and Lymphoma Society. One of the researchers that receives funding from the LLS actually spoke with us about the work they are doing to understand Leukemia cells better. His research is cultivating Leukemia cells specifically and testing their behavior so that we better understand them.

We also got to tour some of the other areas and learn about what Fred Hutch is doing in conjunction with the other members of the Cancer Care Alliance. I was fascinated by much of the work they are doing, but found that one area was particularly surprising to me. They talked about some research they are conducting to see if we can use skin cells to become a type of cell that can be used to create a body part. For example, if you had heart failure they would take a scraping of your skin, and then modify those cells to grow you a new heart. What a neat idea!

The ladies that we work with at LLS told us that they will be having more tours like this in the upcoming months, so if you are interested in taking a tour of Fred Hutch, please let me know.