Decisions to Make

At our Thursday clinic, Dr Oehler was full of new ideas on how to treat Tyler's disease.  As this was one of the things we have been praying for, I am happy to share the blessing with you.  She recently traveled to Barcelona to speak at the European Hematology Association conference, so she was able to talk about Tyler's condition with leading experts from around the world.

One of the contacts she made was with the folks from Ariad.  It sounds like the next phase of the trial will be up and running in both Portland AND Seattle this fall.  If Tyler's health holds until then, we think he will be a good candidate for the trial at that time.

She also indicated that Pfizer was willing to offer Tyler a spot on a trial that they are sponsoring.  We had some concerns about this path because, while the drug looks like an interesting possibility, Tyler would be the 7th human to take it.  As they are currently testing for toxicity in humans, they are starting at very low doses and working their way up gradually.  With his disease being so nasty when he stops taking his nilotnib, I get nervous about the idea of Tyler stopping that drug for any period of time.  The discussion about this possibility did help me to understand a lot more about how drugs work their way into our pharmacy.  We'll have to talk about that more in a future post.

A final option that we discussed was the possibility of a cord blood transplant.  We had considered a 2nd transplant (with Tyler's mother as donor this time), but have had concerns about whether the disease would again evade the graft.  In addition, they estimated that the chance of success (defined as eradication of the disease) was only 10%.  Since we know that the transplant presents several risks and lifestyle adjustments, we have been weighing that option against our desire for good quality of life.

The doctors are suggesting that a cord blood transplant might have a better chance at success, as they can actually choose blood with mismatched HLA markers and try to get a stronger graft versus host response.  Also, many people have donated the cord blood from their child's birth to the registry and we have access to those within a short window of time.

We have decided not to move on any of these options right now, but are biding our time until the fall.  Hopefully, Tyler can enjoy most of the of summer and have good health until then.

Don't Scratch

Tyler suffered a setback in his health this weekend.  It appears that his body got bored with feeling good, so he has developed shingles.  I thought he just didn't want to spend Father's Day with me, but seeing the blisters all over the right side of his head has kind of cured me of that notion.

He is truly miserable, as he has large blisters from his left eye all of the way back on his head and a huge amount of pain.  He's basically been sleeping for the last couple of days.  The worst part of it is the blistering in his eye and the fear that his vision might be affected.

I hope that the blisters crust over soon, so that he is no longer contagious, and the pain begins to fade.

Other options for ordering cards

I have heard from a few readers that they had trouble ordering this month's Cards for a Cause through the links on the blog.  If you have tried but had challenges, you can send me the number of cards that you want of each type to bledsoewedding _at_ hotmail _dot_ com.  You can actually place your order directly with me by e-mail if you want.  Then you can mail me a check, if you prefer that payment instead of an online credit card or Paypal.  Sorry for the funny format on the e-mail address, but I want to avoid as much spam as I can!

June Card of the Month

With all of the craziness this spring, I had gotten far behind in shipping out the cards for a cause that everyone had purchased.  Now that I am finally caught up, I wanted to post the June card (and a bonus card option since I missed May's card). 

Before I add in pictures of the cards, I did want to thank the many supporters we have had so far.  I posted a $200 donation to our Light the Night team from the Cards for a Cause program!  Thank you for helping us fund research into new cures for leukemia.  As you know, Tyler has already been through the 4 FDA approved treatments for leukemia and we are still looking for new options.  Some of the research that is funded by grants from the Leukemia and Lymphoma Society may eventually be an option for Tyler, so I want to get the scientists the funds they need as soon as I can! 

Our fundraising goal this year is $10,000 and every bit of help that you can give us will make a difference!  If you would like to join us in our quest, contact me for more information about how to join our Light the Night team.  We would LOVE to have you walking with us at Greenlake!

Now for the cards...

You may purchase as many copies of the cards as you want. If you purchase 5 or more cards, you will receive a bonus card of another design in your package. Each card is only $2.50, which includes a matching envelope.

June's first card is a galloping horse birthday card on a blue base, with brown toned accents.  It is a 4-1/4" x 5-1/2" card and perfect for a guy or a horse lover.

The second card this month is a vivid pink color with a branch of spring blossoms.  The mat for the flowers is a pale green color and the flowers have a raised glossy texture.  This card is also 4-1/4" x 5-1/2" and perfect for the women in your life.

To purchase the June cards, please click on the Add to Cart buttons. If you receive our post via e-mail, you can reply to the e-mail with the number of cards you want. If you see us in person, you can also just give us a check or cash for your cards.

Also, I've got other sentiments that can be used on these cards, if you want something other than birthday cards!  You can use the notes section to tell me what combination of cards and messages you want, or contact me directly with your requests.

Thanks for helping us to continue our fundraising for the Leukemia and Lymphoma Society!

Outperforming Expectations

Last week, at Tyler's clinic visit our doctor said that Tyler is outperforming every expectation she had of him!  He was in the running for a spot on the Ariad trial, but was beat out by one of the other candidates.  Our doctor says that if the Ariad folks could just see Tyler, they wouldn't be so concerned about his recent health challenges being a risk on the trial.  With that in mind, Tyler is going to Portland today with Hans and I have offered to fly him to Massachusetts to meet with the drug company directly.  ;)

Actually, we are pleased to say that he has actually been able to start golfing on short courses again.  He's pretty worn out after all of the walking to and from the cart, but is improving with the ability to exercise again.  He's got good color back in his face and his normal vigor is apparent when you spend time with him.

His blood counts continue to improve and he is beginning to branch out and eat a larger variety foods.  I have even started up with the "honey do" list again.  :)

Thank you for your continued encouragement.  Many people have e-mailed us to celebrate the recent good news and we sincerely appreciate all of your encouragement in both the good times and the dark times.  Our current prayers are targeted at finding a treatment option that Tyler can qualify for that will make a difference in his long term survival!  We are 3 years into our battle and I am amazed to see how much we have been through so far.  We absolutely could not have made it this far without the outstanding support we receive from coworkers, friends, and family.

We hope to see some of you soon!