Tuesday, March 30, 2010

Hoping for the Best

Right now we are just playing a waiting game.  Tyler has had two lumbar punctures that tested with no signs of leukemia in his spinal fluid, so we are thrilled with that good news.  However, his white blood cell count is dangerously low right now, which puts him at an increased risk for illness.

Today he is getting an MRI to see what changes (if any) have occurred with his tumors down his spinal column.  I think they will have shrunk, but the best news we could get would be that they have gone away completely.  We're definitely hoping to get the results of that test read as soon as possible.

There is also a very strong chance that Tyler will have to check into the hospital to get some high dose chemo that will knock his leukemia completely out.  If that happens (which looks likely at this point), we are looking at another 4 week stay at a local hospital.  We're hoping to keep him healthy enough at home that this doesn't come to pass, but sadly we may not have a choice.

We hope to know more at the end of the week.  Many thanks for the prayers and encouragement on Tyler's behalf!  We hope that our next approach to the folks in the Ariad trial will be the one where Tyler is accepted.  Getting accepted into that study is our first choice (and our oncologist's first choice) in treatments at this point.

Friday, March 26, 2010

Last Chance for the March Card of the Month

Don't miss out on the March Card of the Month. It will only be available until March 31st.

To purchase cards and help us meet our goals for fundraising for the Leukemia and Lymphoma Society, please visit http://bledsoebattle.blogspot.com/2010/03/march-card-of-month.html

Tuesday, March 16, 2010

Give and Get Spring Event

Once again, the Gap/Old Navy/Banana Republic family of companies is offering their Give and Get promotion.  From Thursday, March 18 through Sunday, March 21, you GET 30% off your purchases from any of those stores by presenting the Give and Get coupon

The GIVE part comes into play when the stores give 5% of all your purchases to the Leukemia and Lymphoma Society to fund blood cancer cures.

To help us raise as much money as possible through this event, please forward this link: http://www.gapinc.com/giveandget/lls/ to all of your friends and family.


Sunday, March 14, 2010

Looking for the Right Trail

With our meetings last week, I felt a little bit like we were lost in a forest and looking for the trail that would get us back home. 

The net result of the meetings is that the doctors don't know exactly what to do now.  We are pursuing some options with Clinical Trials out there, but our doctors have no say on whether or not Tyler will be able to join.  We are waiting to hear back from the study investigators.

He has signs of leukemia in his spinal fluid again, which is an exclusion criteria for the study that we are most interested in, so treating that is our first step.  Tyler will be receiving chemotherapy with injections into his spine for the next little bit of time, most likely two times per week.  He has had lumbar puntures throughout the process and they are not much fun.

Despite the news of frequent lumbar punctures, Tyler's spirits are good right now and the pain he was experiencing is completely gone.  He stopped taking the pain pills at the end of last week and is enjoying a return of his appetite with the switch away from Interferon.

So basically... things are good right now, except for the fact that we can't find the trail.

Thanks to all who continue to support us!  We feel so very blessed to have you in our lives and hope that we can repay the favor and encourage you when your spirits are low.

Sunday, March 7, 2010

Quick Improvements

We were pleased to hear, after Tyler's Saturday blood draw, that his blasts are already down to 50% less than what they were on Friday.  We think this is probably due to changing his medicine from Interferon to Tasigna on Thursday night.

Let's hope this is a sign of things to come!!!

Saturday, March 6, 2010

March Card of the Month

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.

March's card is the Thank You card pictured on the left. It is an 4-1/4"  x  5-1/2" card with a brown base and teal accents.  Each card is only $2.50, which includes a matching envelope.

To purchase the March 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!

Thursday, March 4, 2010

Can We Make a U-Turn?

With great regret, we must share that Tyler's disease appears to have advanced again.  We went through a full day of testing today, to try to get more information about what exactly is happening and what we can do to fight it, but we are VERY discouraged by this news.

Over the last week, Tyler has had increasing pain in his upper back and shoulders.  As we took a short trip to celebrate our 3rd anniversary, he initially attributed that pain to sleeping in unfamiliar beds.  Unfortunately, the pain got worse each day -- even after we returned home.  We were in contact with our oncologist on both Monday and Tuesday, with the recommendation that we go to the ER if Tyler was in too much pain to handle.  On Tuesday, we finally did just that.

In the ER, we convinced someone to get an MRI for Tyler's back to see if they could see anything that might be causing his pain.  We were absolutely shocked when the ER doctor came in to tell us that it appeared that Tyler had tumors of some sort up and down his spine.  Much of what she said didn't make sense to us, but the doctors there were able to give Tyler some stronger pain medication (compared to Tylenol at home) and he finally got a little bit of relief.

On Wednesday, we got an appointment at SCCA to find out what was really going on.  While there, we learned that leukemia CAN form solid tumors of white blood cells, although this is rare.  We also learned that Tyler's blood test from that morning was showing blasts.  Blasts are immature white cells that don't really go any of the work they are supposed to do, compared to partially developed white cells that are just lazy (more common in chronic leukemias).  In the phases of leukemia, showing a high amount of blast cells indicates that the disease is progressing to the next stage.

With the fact that Tyler's pain increased rapidly over the period of one week and he showed blasts 1 month after his last test at SCCA, this is NOT a good sign.

While at SCCA on Wednesday, we learned that Tyler has 2 tumors along his spine that are causing him problems, although others likely exist.  One is causing the pain in his back and the other is causing numbness in his hand.  Additionally, a new mass has been identified in his upper left chest area.  They biopsied the mass on his chest today, and are talking about radiation possibly shrinking the tumors in his spine.  One concern about getting radiation at this point is that Tyler has already received so much, he might not be able to handle more.  Each body has a limit to how much it can receive.

Thursday's blood test showed even more blasts than the previous day, so it is likely that whatever we do will have to happen very soon.  While we wait for test results and more meetings with doctors next week, please do keep Tyler in your thoughts.  We are both so very discouraged that his journey is not yet over.

Wednesday, March 3, 2010

Sharing the Path

My friend, Janell, is beginning her walk down the transplant path today.  Janell was diagnosed with Multiple Myeloma in October 2009 and has been on a chemo regimen since then, preparing for an autologous transplant.  An autologous transplant is when the patient donates their own cells to the transplant.  Typically, the doctors get the person into remission, harvest the stem cells, and then (I think) freeze them.  At some later date, they return the harvested cells to the patient.

Janell is the kind of person who brings light to the people around her through her soft voice, her kindness, and her singing.  If you would be so kind as to send your thoughts and prayers her direction over the next few weeks, I would appreciate it.

She will be going through the consultations and preliminary tests this week and next.  Her transplant is tentatively scheduled for sometime in the 3rd week from now.