The Booster Shot

Tyler's DLI was not exactly what we expected.  Scott's lymphocyte collection took about 2 hours, after which he was able to go home and rest.  I picked Tyler up at his dad's house and we headed down to SCCA.  We got there a little bit early, but weren't able to get in for treatment until about 4:15pm.

The doctors came to see Tyler while we were waiting for the lymphocytes to be shipped over from the next building.  Dr. Flowers was practically bouncing with excitement, as she explained to us that Tyler would be the VERY FIRST person to receive a donor lymphocyte infusion from a HAAPLO donor.  She said that HAAPLO-Identical transplants usually have more GVHD and may develop other complications, but don't usually have to get a DLI.  Somehow, Tyler and his dad were just "getting along" a little bit too well.  I've decided to instigate some fights between the two of them, in hopes that Scott's marrow with start fighting with Tyler's leukemia a little bit more.

The actual infusion was really quick because they only gave Tyler 10cc's of lymphocytes.  They froze the rest of the collection from Scott, in case they need to give Tyler a future booster.  The doctor had indicated to use that she could give Tyler 10^6 or 10^7 lymphocytes, but they wanted to use the higher dose so that they could really attack this disease.

Now that we are done with the actual infusion, we wait.  They will monitor Tyler with monthly blood tests, but say that we should not expect changes for the first few months.  He is off his Tasigna (the leukemia medicine he's been on for the majority of the last 18 months), but they have started him on a 6 week course of Interferon.  Tyler has to give himself a shot every night (fun if you love needles, right?!) of Interferon.  This is the drug that they used before Gleevec came on the market, and it is supposed to make him feel like he has the flu for the next few weeks.  So far, so good... But it was only shot #2 tonight.

Thanks for all of the prayers and the encouragement!

Mandy

DLI Day

Thursday is Donor Lymphocyte Infusion (DLI) day! Scott (Tyler's dad) will be starting his apheresis process early in the morning. They'll collect the white blood cells and then return the rest of his blood to him. Tyler and Kate will spend time with Scott, helping to pass the time.

They'll do a little testing on the blood collection and then start Tyler's infusion at about 4pm. It should be a relatively easy process to receive the lymphocytes, as Tyler has gotten many blood transfusions at SCCA. Basically, we'll just hang out and watch TV while the blood is pumped in through an IV.

We do want to take a minute to thank the many people who took the time to send us a note after Tyler's post about Unknowns. We were both very moved by the encouragement that we received and the prayers being said on Tyler's behalf. We know that we would not have our positive attitudes about this process without the great support around us! Thank you so much for posting a comment or sending us an e-mail (or talking to us in person if we are lucky enough to see you in our daily lives).

We hope that this will be the treatment that finally works!

From the great Lee Ann Womack

I Hope You Dance

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,

I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',

Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.
I hope you dance....I hope you dance.

(Time is a wheel in constant motion always rolling us along,Tell me who wants to look back on their years and wonder where those years have gone.)

I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

Love this song!


Ty

Card of the Month - Feburary 2009

To continue our fundraising efforts for the Leukemia and Lymphoma Society, we have selected a new card to sell on the blog this month. You may purchase as many copies of this card as you want. If you purchase 5 or more cards, you will receive a bonus card of another design in your package. 

February's card is the Love you Much card pictured on the left. It is an 4-1/4" square card with a white base and rose and moss cardstock. Each card is only $2.50, which includes a matching envelope. To purchase the February card, please click on the Buy Now button below.  If you receive our post via e-mail, you can reply to the e-mail with the number of cards you want.

Thanks for helping us to continue our fundraising!

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.