My Heart Breaks a Little

Today, I heard the very sad news that another friend of mine has been diagnosed with a blood cancer.  Each time I have heard this kind of news, my heart breaks a little bit more.  It seems that the speed of this news is increasing, which makes me nervous.  I am thinking more and more about my environment and whether or not I have increased my risks through choices there....

In any case, I ask you to join me in praying for my friend, a truly beautiful woman, as she and her family learn to accept this difficult news and begin her treatment.

Road Trip

I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.

When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!

Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.

We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.

I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.

Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.

I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look great........my chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!

Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!

Tyler

Light the Night 2009 Photos

Our 2009 Light the Night team was out in force on Saturday, September 26th.  It was a beautiful evening and an amazing opportunity for us to celebrate how far we've come.  Tyler's original transplant date was around this time last year, so we were focused on the pre-transplant tests and the massive fundraising effort during last year's walk.

This year, I was delighted to celebrate how far we have come!  Tyler is in remission and looking much like his old self.  As promised, I have finally posted a picture of him with his new crop of hair!  He and I carried a Gold balloon at the walk in honor of Cathy Frank, who lost her battle to leukemia several years ago.

We had participants of all ages, which added to my enjoyment of the evening.  Mark and Vicki told their son that he was going to be in the Light the Night "parade" which was just about perfect.

Our team has raised over $4600 so far, which is FANTASTIC!  I have set some personal goals that will prompt me to keep working a little bit longer on my fundraising, so I am going to be sending out some e-mails with more details when I have them.  If you wanted to donate, but haven't you can click here to contribute the Leukemia and Lymphoma Society on behalf of our team.  I'm also collecting wine for an upcoming wine raffle, so you can send any spare bottles my way!

Both Tyler and I are appreciative that so many friends and family members were able to join us for a lovely evening walk.  We could not have asked for better weather or better company!

Thanks again to everyone who helped to make the evening a success for us!

Sharing My Blood

I gave blood today!  Although I don't really enjoy the process of giving blood, I definitely enjoy the feeling of having contributed to the health of others.  Plus, my work lets us take part in a special breakfast if we donate blood.  If you have met me for more than an hour, you know that my life is ruled by my stomach!

Does your work have something similar?  If so, hopefully you get the opportunity to donate blood yourself!  If not, I encourage you to find a blood drive near you.  The life you save might be a friend's!

Blood Donation

If you are in the Everett area on Tuesday, October 6th, please consider donating blood at my office! We have a blood drive that still needs a few more donations between the hours of 9 and noon. To reserve a spot for yourself, please click here or give me a call.

Thanks for your willingness to help!

Mandy

Light The Night

Hey everyone!! I want to thank everyone so much for donations for this years walk, and thank all of those able to join us for the walk itself! I know many of you werent able to make it for various reasons, and we want you to know we understand of course. For all of those praying, and sending positive thoughts for my continued recovery from this disease......thank you! My recovery has been slowed slightly with the onset of some GVHD symptoms, but we will be dealing with those symptoms and treating them accordingly as time goes on. I wont have an update on that until probably after Oct. 13th.......my next appt. with SCCA.

I am hoping to have enough strength, stamina,and knowledge that working around soils, plants, etc...will be safe on a daily basis to allow me to go back to work sometime in either December or January. I will know more hopefully by early November.

Right now I fill my time with trying to stay as active as possible. Last night I even went and attempted to play soccer. I played goalkeeper, and my agility was pretty lame......but it was great to be out there and I'm glad I did it! Hopefully my teammates will bear with me as I regain my strength in my left leg (calf specifically). Im hoping I can be somewhere around 75% of my old self by next spring. I think I will need to do a lot of running, walking to get to that point. The bottom line for me was just being out there, and seeing good friends again!

Mandy mentioned my golf score of 74, which was by far my best score relative to par ever (+3), my previous best was (+9), but she didnt mention my score at Alta Lake near Chelan where I shot a 101 (+29) or my average score this year which is more around (+16-18). Golf is an extremely humbling game, but the humility is worth it because of the challenge! There is something very special about being outside, walking with friends, razzin each other, and hitting that stupid ball that makes the difficult parts of the game so worthwhile.

Once again, thank you to everyone who contributed to Team Firefly this year. We really appreciate it!!

Tyler

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.