The Final Countdown

Tyler has agreed to check into the hospital on Thursday of this week to begin his Induction Therapy. We anticipate that he will be in the hospital for about a month, so we are trying to clean out our DVR before he goes. ;) It's amazing how addicted we've gotten to our set of shows.

He's feeling generally crappy right now and still has that lingering cough. It's hard to see his spirits so low and his appetite down, but we hope that the Induction Therapy will knock the CML out of his body again. the real question is what to do afterwards.... The doctors are advising another round of DLI, which would mean giving Tyler more of his Dad's white blood cells to stimulate an immune response. We are also still hoping to get Tyler qualified for a clinical trial to find a drug that might keep things under control. Tyler is also entertaining the idea of a second transplant.

Thanks for your encouragement! We are so very thankful to have you in our lives and keeping us on this path towards (hopefully) a cure for Tyler's CML.

April 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.

April's card is the blank firefly card pictured on the left. It is a 4-1/4" x 5-1/2" card with a cream base with rust paper and olive ribbon. The rust paper pattern may vary from the design shown in this photo.  Each card is only $2.50, which includes a matching envelope.

To purchase the April 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!

Falling off the Wagon (or is it back on??)

While I posted my last message, Tyler was getting an MRI of his spine at SCCA.  It ended up taking 3 hours, rather than 2, so the rest of our appointments got off schedule as well.  When we finally got into the Infusion area, where Tyler was scheduled to get 2 bags of platelets (in preparation for a lumbar puncture that afternoon), the nurse there found that he had a temperature. 

He'd actually shown a low grade temp that morning (about 99-100), so we had asked a different nurse to check him out.  Unfortunately, his temp had moved out of the "low grade" area (102.1) with the first temp taken on the infusion floor.  They tested again a few minutes later and the temp was at 101.9.

Because of that, the kind nurses and doctors convinced to accept the top notch accomodations available at UW Medical Center.  Tyler was actually in the hospital Tuesday through Friday of last week.  They tested his blood (every day) for infections, but never found any signs of a virus.  Despite that, his temp fluctuated up and down and he has a cough and congestion.

He came home on Friday afternoon, but is worn out and feeling kind of crappy.  We spent a low-key weekend at home, with Easter being highlighted with a visit from our family (who came bearing DINNER -- my favorite gift of all!!) and a little movie watching.

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.

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

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.

Thanks!

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.

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!!!

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!
 

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.