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.

Another potential link

A friend e-mailed the first glimmers of the following story to me:

http://seattlepi.nwsource.com/soccer/390118_french01.html

It appears that Michelle French, a national team player from Washington State, has also been diagnosed with a blood cancer. The Washington State Youth Soccer Association is raffling off tickets to a Manchester United game to help Michelle with her medical costs. If you want to help with the fundraising, please go to the Washington State Youth Soccer Association website

And if you hear of other soccer players with blood cancer, I'd certainly like to hear. It's something that I want to pursue more when my time frees up again, in hopes of finally putting my mind at rest on whether or not there is a link.

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.

More good news

I'm so happy to share that we have more good news this week from Tyler's doctor appointment. His spleen was scanned and, although we don't have the official read from Dr M, the ultrasound technician said it looked the same this week as it did when they scanned it months ago to let him come back to soccer.

On top of that he had good blood counts across the board. I think he is liking the 90mg dosage much better than his higher versions. His counts this week were:

• White Blood Cells (WBC) = 2.9
• Hematocrit (HCT) (part of red blood) = 30.2
• Platelets (PLT) = 151

With those great numbers, a good spleen scan, and hopefully another week of good CBC results, we might even risk asking about when soccer could re-enter his life. Now that he is working part time, I think soccer is the biggest loss he has experienced since he moved to AML in December.

Thanks for checking in -- we'll update again after the doctor visit this week. :)

Mandy

Moving on to the Spleen

Tyler's doctor's visit this week went really well. It was interesting that the doctor told us during our visit that he had actually been thinking about Tyler for two days before, wondering if the new dosage would turn out to be the right one. It seems like it must have been a good start, because everything the doctor looked at this week looked positive.

His WBC were 3.0, his HCT was 28.7, and his platelets were 138. Dr. M said his liver enzymes were down (I assume that means less toxicity from the medication) and everything was as he would wish. He even had Tyler schedule a spleen scan for next week. Many of you will remember that Tyler's last spleen scan allowed him to return to soccer. We're trying not to pester the doctor every week about when Tyler can return to the pitch, but I can't help but be hopeful.

The only downside of the visit was that the doctor said Tyler will need to be on light duty at work through the month of February. Ty does have the freedom to monitor his own work schedule, but was hoping that his body would repaid quickly enough for him to return to work full time. The last time he worked his regular schedule was the first week of December, so it has been a bit odd.

I know he has been happy to be back to work part time and has been careful not to overdo it in his daily chores. As he rebuilds his lost strength, I think we will have an easier time each day.

This weekend is Julie's birthday, so we are off to a family celebration now. It's so great to have an excuse to party!

Mandy

All Good Streaks Come to an End

I must admit that I failed miserably at predicting Tyler's blood counts on Wednesday, January 2nd. I predicted a platelet count of 54 (would you say I am optimistic?), when in reality it was a solid 36. Red blood cells dropped to 28.1 from 30.7 on the previous visit.

We finally got to meet with our regular doctor, which was a treat after two weeks of substitute doctors and nurses. We brought up some questions we had about stem cell transplants, including the timing of when Tyler might expect to have one. Much to our surprise, Dr. M said that he actually is against transplants for most cases because the majority of the risk in a transplant is at the front end. Complications during surgery, the possibility of rejecting the transplanted cells, etc. all occur within the first few months if you are getting a transplant.

Our other possible path is to stay with the Sprycel, assuming Tyler continues to respond well to it, for an indefinite period of time. Dr. M suggests that we do the initial work for the transplant, so that we can move on that quickly if needed. The matching process will probably be the most time consuming part of the preparation, so they would need to determine if Gump is a match for Tyler long before the surgery might actually be needed.

Tyler has a blood test only next week, and then we meet with Dr. M again on January 16th. It's nice to have the freedom from daily doctor visits, although Tyler is still unable to work. Hopefully his blood counts on the 16th will have improved enough for him to go back to work. He's close on being able to work now, but the doctor is playing it safe since both red blood cells and platelets are still in a low range. Once Tyler gets his platelet count back up to 150, he might get to play soccer again. So now you know what our real goal is... We'll do anything to get back on the field!

I have been starting to read more about nutrition so that we can plan our diet to be supportive of Tyler's therapy. So much of what I have seen in other research supports the idea of a whole foods diet. I guess I might need to start shopping at Whole Foods now! ;) With luck, we will only need small changes to see improvements in our health.

Thanks for the prayers for health in 2008! I'm hoping that he continues to respond well to the Sprycel and that the clinical trials in process go well, so that more and more effective medicines are released soon.

Happy New Year from both of us!

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

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

Entry for May 31

Tyler's BCR-Abl test earlier in the month was not completely negative, so the doctor decided to postpone the bone marrow aspiration. Tyler is down to only 30% abnormal choromosomes in his blood, which Dr. McGee said was good progress for where we are in his treatment cycle.

He did, however, finally allow Tyler to get his spleen scanned to determine if he can return to our favorite sport. On Tuesday of this week, Tyler got an ultrasound on his spleen to see if it has returned to normal size. We should get the results from that test either today or tomorrow. We have a Coed game tonight, so we are both hoping that the results come in today and that he can resume all of his regular activities. It's been tough on Tyler to not get the chance to run around and see our friends regularly, so this is a very important milestone for us. If you get a chance (and see this entry today), please say a prayer that the results come in as we hope.

Tyler continues to feel pretty good in every other way. He ran the 7mile Rhody Run in honor of his grandfather last weekend. Although his time didn't live up to what he's done in that race in the past, he completed the race with a minimal amount of training and no soccer in recent past. I was very proud of him for remembering his grandfather in such a special way. They'd both run that race several times in the past. Tyler can probably elaborate more on that...

I survived Mom's software conversion, although I think the jury is still out on whether or not Mom survived it. It was a pleasure to get to have lunch with her for almost two weeks straight, but both of us were disappointed that we didn't get to work together more. I'm hoping she'll have a reason to call me for support at some point in the future though... I do have to admit to being very impressed with Mom's management style. You probably wouldn't be surprised, because so many of you know her well, but she is a beacon of calm for her office even when overworked herself. She uses logic and compassion, intelligence and involvement to bring the best out of her staff. All of my teammates and I were very impressed with how great their staff is. I was extremely impressed with Mom and wanted to share with those who also love her.
I'm hoping that Tyler and I will have more good news to post later this week, but will close for now. Thanks for your continued support and for taking the time to read our blog and find out how things are going with us. Much love to all of you!

Mandy

Entry for May 10

Last Wednesday, we had another appointment with Dr. McGee. He'd been in Hawaii for 2 weeks, so Tyler had blood tests only those weeks. Our nurse, Debbie, tried to trick Tyler into admitting that he had started playing soccer already. Luckily, Tyler has remained strong against the incredible temptation of our soccer games. We were hopeful that his consistent blood tests over the last month might mean that Tyler is ready for his spleen scan.

The doctor said that Tyler's blood work does indeed look great and he was very pleased that Tyler is still doing well at the higher dose of Gleevec. Next Monday, Ty is scheduled to go in for a more comprehensive blood test that will test for the presence of the abnormal BCR-ABL gene in his bloodstream. If that is negative, then Tyler will go back on the 29th for another bone marrow aspiration. We are delighted to hear that he has made such fantastic progress in such a short time! The fact that he is moving towards bone marrow tests means that he is moving further into remission.

On the downside, we found out that we have to wait for the results of the bone marrow test before he can get his spleen scanned, so he probably has another month before he can play with us. We thank all of you for your prayers, your thoughts, your questions about his progress. Please don't worry that we aren't willing to talk about this. We are just happy that so many people care enough to ask.

On the upside, we spent the weekend in Walla Walla for our second annual "Wallapalooza" festival. Although we played even less soccer this year, it was still fun. We enjoyed their spring release of new wines by visiting many of the wineries in the area. I brought back several bottles of tasty wines and I am looking forward to enjoying them over the next year. I think Tyler's highlight of the weekend was probably the "soccer volleyball" game that they invented. Because the risk of him playing soccer is only the unlikely chance of physical contact causing his spleen to rupture, he was able to play volleyball with several of the other guys. They played until long after dark, so it must have been pretty fun. I sat inside and ate everybody else's dinner while he was playing, so I'll probably be twice my size next time you see us. :)

Thanks again for everything! Hopefully Tyler will post his own thoughts soon about last week's appointment and then we hope to have good news for you next week after the BCR-ABL test.

Happy Mother's Day to all of the moms out there!

Mandy

Plant Sale Prep

Tyler is busy preparing for the Children's Hospital Garden Sale this weekend, so I am not sure if he will have time to post this week. Yesterday was another blood draw and all of his counts look very close to what they were last week. This is GREAT news for both of us! He has had blood draws in normal ranges for several weeks now, which is one of our major goals.

Next week when we meet with Dr. McGee, we will ask him again if Tyler can play soccer. Last time we asked, the good doctor said we needed to wait until we had a month of consistent test results under our belts before we could even think about getting a scan of Tyler's spleen. But... it looks to me like we have finally reached that goal! (no pun intended!) Tyler is feeling good and is anxious to get back on the field. On top of that, we have some soccer scheduled during our trip to Walla Walla next weekend and it would be great if Tyler could play a little while we are there.
We had a lovely dinner with Tyler's cousins Nate and Heidi on Tuesday evening. It was a real treat to get a tour of their new home and share an evening with them. They were so gracious about having us over and providing us with incredibly tasty food. Their three kids entertained us with stories of they accomplishments and we enjoyed talking about the stories Nate and Tyler had heard about their dads when Scott and Jim were younger.

Another week closer to Tyler playing soccer is another week closer to our short term goal. I think I'm almost as excited as he is for that day!

Much love to all of you,

Mandy

Entry for April 19

Today it has been exactly two months since I was diagnosed with CML. It seems much longer than that, because life seems so normal right now. I had expected it would have taken much longer to feel as well as I do now. The Gleevec is an amazing drug, and it brings me much hope that I will fully recover.

I have been extremely blessed to have Mandy by my side, as she has provided me with her energy and spirit! The only times I feel sad right now is when she goes off to play soccer. I really miss playing soccer, and being with our friends on the field.

My blood counts have been in the normal ranges mostly the last three times. I need to show normal ranges for a couple more weeks before Dr. McGee can scan my spleen and maybe give me the okay to play soccer again.

In the meantime, I really need to get some inspiration to hit the track, stationary bike, and swimming pool as we will be entering a mini-triathlon in June. (3mile run, 1/4 mile swim, and 12 mile bike ride)

Thank you all so much for your caring and prayers. I can feel them with me!

Tyler