Last Days to Order the February Card of the Month

If you are interested in purchasing the card of the month, you have until Sunday, February 28th.

To order, go to http://bledsoebattle.blogspot.com/2010/02/card-of-month-feburary-2009.html and click on the Buy Now button.

Thanks again!

3rd Cancerversary

Today is the 3rd anniversary of the date we found out about Tyler's leukemia.  He'd been feeling ill all weekend and finally went to the doctor on Monday.  The doctor was immediately concerned when he saw Tyler's elevated white blood cell count.  Because Tyler also had pnuemonia or bronchitis, he was checked into the hospital immediately and started on IV antibiotics.

As I reflect on those early days, I remember the signs of cancer that Tyler was experiencing for months before his visit to the doctor.  I actually suspected something was wrong, although I would never have guessed that Tyler would be diagnosed with leukemia.  When Hans was diagnosed about 18 months after Tyler, we discovered that both men had experienced some of the same symptoms.  With that in mind, I wanted to mention a few of the warning signs that should get you in to see your own doctor.  These are not signs of cancer by themselves, but signs that something needs to be looked at.

• Unexplained Weight Loss
• Fever (especially Night Sweats)
• Fatigue
• Pain
• Skin Changes

Tyler had night sweats and fatigue for sure.  After soccer games, he would come home and shake and shiver for at least an hour afterwards.  This was definitely not normal for him, but he attributed this to getting older.

Please, if you have any of the symptoms above, make an appointment for a physical with your own doctor.  It is best to know what is causing the symptom and find out if you can do anything to make it stop.

Starting to Feel it

Tyler has been taking Interferon for about a week now and is definitely feeling it.  The doctor predicted that Tyler would feel like he had the flu for about 2 weeks and that is a good description.  He's tired and achy and feeling lousy overall.  Sadly, there isn't much that we can do except suffer through it.

He continues to give himself a shot each night.  He must give the shot in a different place each night, so he alternates between left and right legs, left and right belly, and left and right arm.  Actually...  I have to give the arm shots.  I sympathize so much more with diabetics who must give themselves insulin shots, after watching Tyler give himself a shot on Interferon.

We thank you for your continued prayers!

Baby Mitch

With great pleasure, we announce the birth of our nephew, Mitch.  He was born on February 6th, about 2 weeks early, but is doing really well.  Julie had planned to have her own birthday party the evening of the 6th, but had to cancel the event after admitting that she might be in labor.  Mitch was apparently determined to be Julie's birthday present, so he decided to rush into the world!

Jeff and Julie are adjusting to parenthood amazingly well.  Mitch has a very blonde fuzz on his head, so it looks like he will take after his parents.

I'm excited that Jeff and Julie live so close to us.  There is a good chance that I might get more chances to babysit him in the near future!

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!