Unknowns?

There is no way to know what will happen from here. My life with Leukemia continues as we now know after one year post transplant. Next week I will be involved in a procedure which will hopefully finish off what the transplant started. Its called a Donor Lymphocyte Infusion (DLI), and my father and I will begin that route next week. This was not the greatest news to receive after having a very smooth and otherwise happy one year evaluation, but was also not completely unexpected. From here the path veers somewhat, but the goal remains the same.......eliminate the disease from my system.

The result of this procedure has a wide array of outcomes including remission, a wide range of potential GVHD symptoms, and of course it not working, or only buying me some time until something better comes along. We feel it is in my best interest to do this procedure in the hopes of full remission. We can only continue to try and do the right things and go with our heart dealing with this mysterious disease. I could choose to sulk, pout, give up, lose hope, etc.....but for me those are not an option. The outcome is unknown, but what is known is that I have a very good life otherwise......a beautiful wife, great family, amazing friends, and absolutely incredible support from everyone I've known past and present. So I will continue to move forward and concentrate on what I can do. Life is way too precious to choose otherwise! There have been some amazing things that have happened during my life with Leukemia, and I believe in my heart that amazing things will continue to happen no matter what happens with this disease.

My father has given me life with his bone marrow and blood, and it has successfully removed most of the disease. Now its time to finish the job! Next week he will graciously donate more of his body to protect me, and allow me to continue such a wonderful life. I cant tell you how excited I am to live a long healthy life, and for Mandy and I to share some great moments together and with those we love!

From the bottom of my heart,

Tyler

Last days to order the January Card of the Month

If you are interested in purchasing the card of the month, you have until Sunday, January 31st.  Thanks to those who have helped us to kick off our fundraising efforts in 2010!

To order, go to http://bledsoebattle.blogspot.com/2010/01/card-of-month-january-2009.html and click on the Buy Now button.

Thanks again!

The Battle Continues...

We met with the doctors at SCCA today to get the results of Tyler's testing.  Sadly, they tell us that the leukemia is back in play in Tyler's body.  We had seen signs of this in his blood tests, but the ultimate sign that he needs some additional treatment came from his bone marrow.  They'd hoped that the marrow would be clear, and only the blood was showing signs of the disease, but this was not the case.

The doctor strongly recommended that Tyler continue with plans for a Donor Lymphocyte Infusion (DLI).  This means they will draw blood from Tyler's father (who graciously donated marrow about a year ago) and separate out the white blood cells.  Tyler will then get a blood transfusion of just those white blood cells.

The idea behind his treatment is that Scott's white blood cells should recognize that the leukemia is not supposed to be in Tyler's body and attack it.  This is known as the graft versus leukemia effect.  The downside is that Scott's white blood cells will also think TYLER'S body looks foreign and attack him as well, causing a new round of Graft versus Host Disease (GVHD).

The doctor said that the response rate for this treatment has been very good, but of course we are concerned about the possible side effects.  Tyler really wants to get back to work, but is worried that the GVHD will make that difficult.  We'll just have to take that as it comes though, since it is not a guarantee.

Evaluation week at SCCA

Tomorrow will be my last scheduled day at SCCA this week for tests, blood draws, etc...We will be meeting with the nurses with Long Term Follow Up to discuss everything we did this week, including my bone marrow aspiration. Im somewhat nervous about the results, but overall have been extremely happy with everything this week. Being there has brought back many memories.........some good, and some not so good. I feel like tomorrow is a giant stepping stone towards moving on to more normalcy (is that a word?)........I feel great, and I hope to go back to work very soon. Please send positive thoughts and/or prayers our way that things go well tomorrow. I really want our 2010 to be a great one! Also, I just want to say that I appreciate all of you for your warm thoughts, prayers, and encouragement through everything we've gone through over the last couple years. To have "so much" positive energy surrounding us has been absolutely uplifting beyond anything I could have imagined. Its very powerful, and I will never forget how amazingly great the support is!

Tyler

Happy Re-birthday, Tyler!

Tyler is celebrating his first Re-birthday today!  Will you join us in wishing him a clean bill of health?  That would be the best gift ever!

Monday's Testing

Today went really well at SCCA!  Tyler had about 10 tubes of blood drawn for various lab tests to kick off the morning.  Then he had a comprehensive physical looking all over for any signs of Graft Versus Host Disease (GVHD).  He did show small signs in his mouth, but in general they rated him as not having GVHD.

Then, the team cancelled 2 of his appointments for tomorrow and 2 of his medications (at least until Thursday's final conference).  His blood test results showed that he was well within acceptable ranges.

Finally, he had a bone marrow aspirate (to which they added a bone marrow biopsy and a skin biopsy).  It was fairly uneventful (thanks for the lovely drugs they give him) and the fact that they got marrow on the first attempt.  He's a little sore now from the bone marrow procedure, but we'll have a low key evening and he should be feeling better by tomorrow.

Thanks for all of the prayers for his good tests.  Our friend, Hans, has his 3 month bone marrow aspirate tomorrow, so we would ask that our friends say a prayer for his test results as well.

Studying for his Finals

Wednesday marks the 1 year anniversary of Tyler's bone marrow transplant, so we have been invited back to SCCA for testing.  They prepared us for this during the preparation phase, explaining that transplant patients get tested for about a week at the 1 year mark.

We kick things off with a questionnaire detailing all of the possible symptoms that Tyler might be experiencing and a bone marrow aspiration on Monday.

On Tuesday, Tyler will get a Pulmonary Function test (to evaluate the health of his lungs), a dental exam (to look for signs of GVHD), and an eye test.

Wednesday is a quiet day, but he will get all of his vaccines on Thursday and evaluate his medications at that time.  I really hope that they decide he can taper off some of his current medications now that he is passing the critical 1 year mark.

Tyler has been studying hard so that he can pass all of his tests, but a little help from friends and family wouldn't hurt either!

More details on Card of the Month

We heard from some readers today that the link in yesterday's post did not work for them.  It worked for me from the website, although it was a little bit slow to load.  Try going directly to our blog post at http://bledsoebattle.blogspot.com/2010/01/card-of-month-january-2009.html and clicking on "Buy Now".  If it doesn't load after a few minutes, please let me know with a comment on the blog or an e-mail.

If you received the blog via e-mail yourself, you can reply to the e-mail with your card order (number of cards requested).  We'll contact you to figure out payment details (either through Paypal or mail or in person).

Thanks for your interest in our fundraising efforts!

Mandy

Card of the Month - January 2009

To continue our fundraising efforts for the Leukemia and Lymphoma Society and offer friends/family a new way to support our fundraising efforts, Tyler and I have selected a card to sell on the blog this month.  You may purchase as many copies of this card as you want and we look forward to sharing Mandy's cards with you, while pursuing our fundraising goals.

If you purchase 5 or more cards, you will receive a bonus card of another design in your package.

January's card is the Medallion Thank You card pictured on the left.  It is an ivory colored card, with a matching envelope. To purchase the January card, please click on the Buy Now button below.

Thanks for helping us to continue our fundraising!

Make a Lifesaving Habit - Give Blood!

January is National Blood Donor month and a great opportunity to save a life with just a few minutes of your time and a few droplets of replaceable blood!  Blood is traditionally in short supply during the winter months due to the holidays, travel schedules, inclement weather and illness. January, in particular, is a difficult month for blood centers to collect blood donations. A reduction in turnout can put our nation’s blood inventory at a critical low.

Every day in our country, approximately 39,000 units of blood are required in hospitals and emergency treatment facilities for patients with cancer and other diseases, for organ transplant recipients, and to help save the lives of accident victims. Our help is essential to ensure that blood is available to patients whenever and wherever it is needed.

If you would like more information about donating blood, you can contact your local blood bank (Puget Sound Blood Center for us) or view a list of Frequently Asked Questions about blood donation at the American Association of Blood Banks.