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.

Stubborn Little Suckers!

Tyler had just begun his first day at his old job, in preparation to return to work in January, when he got a call from Dr McGee.  The doctor told Tyler that he needed to come in for an appointment the following day to talk about a recent lab test.  Tyler called back to their office a few times trying to get more information, but no one could tell him anything futher.

Let me just step aside from my story for a minute to share a little fact that you could probably figure out.  It was extremely difficult to wait for 24 hours, wondering what the new information would be?  It ruined Tyler's first day with his work crew and our evening, as we worried about what exactly the bad news would be.  If you are a doctor or know a doctor, please tell them that bad news over the phone is infinitely better than bad news after a 24 hour wait.

After sharing our thoughts on that subject with our own doctor, we discovered that he was concerned about Tyler's latest BCR-ABL test results.  They showed a tiny bit of leukemia cells floating around in Tyler's system.  We had actually seen a test result from October that showed the same amount, but Dr McGee had indicated that a subsequent test showed no signs of leukemia so the October test was probably a fluke.

The amount of Leukemia shown as a ratio on this test was .02, which isn't uncommon for post transplant patients. In fact this ratio is in a range that shows that the chance of relapse is very unlikely. We want the ratio to be 0 however (negative), so we have discussed the possibility of another procedure. The goal is 100% remission.  On December 3rd at Puget Sound Cancer Care the test came back 0 (neg), and the same test done again on December 6th at SCCA came back as .02 again. The range for "very unlikely to relapse" is 0-0.10.

Dr McGee is referring Tyler back to SCCA for testing and possible treatment.  Most likely, Tyler would get a Donor Lymphomcyte Infusion.  This is like a booster shot of white blood cells from his father, that should stimulate the marrow to attack the leukemia cells that are floating around in there.  The goal of this treatment is to get Tyler back into full remission, but would likely cause a recurrence and possibly an increase in Tyler's Graft vs Host (GVHD) symptoms, but would also increase the Graft vs. Leukemia effect (beneficial). I know this all sounds very complicated, but we are working through this and finding out about the procedure.

Tyler would NOT have to endure the chemotherapy and radiation again with this treatment though.  It would be very similar to getting a blood transfusion, although his Dad's blood would be collected and boiled down to just the white blood cell part.

We have not yet committed to this treatment, but expect to learn more about it during Tyler's one year follow up appointment in a month.

Imagine Saving a Life!

Please help us save some lives next week. As a blood donor with Puget Sound Blood Center, you can give the precious gift of life this holiday season. Your blood donation brings much needed support to patients in our hospitals and the need for blood in our community is ongoing.

Our "O negative " blood type is at a CRITICAL LEVEL...
The need for 0 NEG DONORS:

- “Only O negative blood can be used for all patients in an emergency.”
- “That is why blood donors, like you, play such a vital role in creating a safety net when tragedy strikes.”
-“That is why blood donors, like you, are needed to donate as often as they can give.”
-“Please help to ensure the local supply of blood is available by donating blood as often as you can.”
-Why not start today? Imagine saving a life.


When: Tuesday, December 8th
Where: WSIPC (Everett, WA) – Bus in parking lot
When: 9:00 am – 12:00 pm

To sign up on-line please click on the following link: http://www.psbc.org/programs/drive.asp?URL=1009
For information please contact Don Denny at (425) 349-6600 ext. 6453 or email at ddenny@wsipc.org or contact Hal Woods at (425) 349-6600 ext. 6451 or email at hwoods@wsipc.org. 
For questions regarding donor eligibility, please contact the Clinical Program at 1-800-DONATE-1, Ext 2543 or clinicalprogram@psbc.org
Thank you in advance for saving lives!