Blind Man's Vision

For the many who wanted to know if Tyler was able to play golf... I figured I had better post a quick update.

Tyler had an eye appointment on Friday morning and the doctor continued to be pleased with the progress made.  Unfortunately, Tyler isn't quite as happy.  He still feels like something is scraping the inside of his eye and finds that he is most comfortable with his left eye closed.  He is unable to enjoy this stretch of beautiful weather because he is also very sensitive to bright light.

Despite all of that, he did travel to Bellingham for the annual Ballapalooza golf outing.  And after much begging by his wife, he decided to give the golf a try (rather than just acting as a caddy).  According to all reports, he was quite blind on the course and started off the day with a quadruple bogey.  Somehow he turned it around and had the best score of the group! 

Despite the cart to move him around, he was REALLY sore by the end of the round.  I am hoping that he can get out again soon and begin building up his strength and endurance again.  But first, we have to get over this eye thing.
 
Thanks to everyone for their encouragement, their prayers, and their e-mails!

Tyler says "Eye" am Better!

Sorry that my "punny" husband got to pick today's title, but the news is finally good news!  At our Tuesday afternoon appointment, the doctor was very pleased with what he saw in Tyler's left eye.  Although he was hoping to see this level of improvement last Friday, we really didn't want to complain too much. No More Shots in the eye was enough for us to celebrate!  Tyler REALLY splurged and ordered his drink of choice (Vanilla Latte with Light Ice) in the Venti size, instead of his normal Grande.

The doctor actually told us that Tyler's eye looked "less fluffy" on Tuesday (my pick for the title of this post), so I guess that is a good thing?!  The ophthalmologist has been really good to work with, so we can't complain too much...

In addition, Tyler says that today (Wednesday) was the first day in which he has noticed any improvement in his eye in the last month that he has been fighting shingles.  I am still pulling for golf to be possible on Friday, so we want to see more and more improvements on Thursday.

He is dealing with severe itching and some pain from the rest of his head.  If you remember fighting chicken pox, then you probably know how strong the urge to scratch can be!  Shingles is actually the reactivation of the chicken pox virus, although it doesn't manifest itself in the same way.

Thanks for the encouragement and well wishes.  Tyler and I both appreciate the support that we receive from coworkers, friends, and family members.

The Eye of the Storm

After our ER visit, we were scheduled for a follow up visit with an opthamologist to be certain that the shingles infection did not move into his eye.  Unfortunately, at our appointment on Tuesday, the doctors did see signs of infection inside Tyler's eye.  What I thought would be a quick 1 hour visit turned into a 6 hour appointment with both the corneal specialist and a retinal specialist.

They took pictures of his eye to identify the location of the infection and monitor the progress over time.  The retinal specialist told u that we would get to know each other REALLY well, as we will be seeing him quite a bit for the next 3-4 months.  Right now, the infection is just around the outer edges of his eye.  If the infection progresses into the center of the eye, that is very dangerous.  We also have to watch out for retinal detachment right now, so they are monitoring his eye pressure along with the inflammation.

The worst part of the appointment was the antiviral shot that Tyler had to get.  They winched his eye open and shot medicine into the back of the eye to attack the infection.  They also extracted some fluid from the eye to make sure the infection they see was actually shingles.  Tyler says this was the most painful thing he has ever experienced, which made my heart hurt, as I have seen how much pain he has endured in the past 3 years.

The eye doctor upped Tyler's dosage of Valacyclovir from 3 pills a day to 6 pills today, so I got to spend most of a day on the phone with the doctor's office, the pharmacy, and the insurance company trying to make that happen.  We are exceedingly frustrated that it is so difficult to get medicine that is medically necessary.  Tyler is at risk of going blind if we can't get this infection under control, but the insurance company doesn't want to pay for the dosage the doctor has prescribed because the medicine is expensive.  Grrr...  I HATE dealing with insurance issues!

We had a follow up appointment with the eye doctor at the end of the week.  Upon inspection they thought the infection had stayed the same, but the pictures showed a small increase in infected areas.  If he had stayed the same or improved, they would have sent us home.  Since it got worse, Tyler had to endure another shot in the eye.  The doctor considered admitting him to the hospital, to treat the eye with IV medicines, but decided that he would see if the shot was sufficient for now.  We have another appointment on Tuesday to see if any progress has been made.

Tyler has been invited to go golfing on Friday, so I am REALLY hoping that his eye improves enough that 1) we don't have to see the doctor that day and 2) his light sensitivity has improved enough to allow him to go outside again.  Despite the beautiful weather here, we have been living in a cave trying to keep the light to a minimum in the house.

Please wish us luck for all of our events on Tuesday!

Janell's Battle

My friend and coworker had her transplant on Friday, July 2nd.  We remember how painful those first few weeks were and wish her strength to get through it and a very quick (and healthy) engraftment!

If you are curious to see more about Janell's journey, you can click on the link to Janell's Reflections on our website.

Overdue Health Updates

When Tyler was diagnosed with shingles, just after Father's Day, he was given a 7-day course of an antiviral medicine called Valacyclovir.  After a couple days of sleeping with pain pills, Tyler finally started to improve.  Unfortunately, once the medicine ran out, he gradually got worse again.  While the pain was bad, we were actually more concerned about his sensitivity to light, blurred vision, and the feeling that something was scraping inside his eye.

So...  We ended up in the ER on July 3rd, waiting to see an opthalmologist who could evaluate the permanent risks to Tyler's vision.  Thankfully, the eye doctors thought that his eye was only minimally infected.  The ER doctor prescribed another 7 day course of Valacyclovir and the opthalmologists prescribed some eye drops to relieve the swelling in his eye.

Interestingly (and somewhat sad), the eye doctors indicated that this was a REALLY big weekend in their field.  When we continued to look at them blankly, they explained that eyes and hands are the most frequent injuries of fireworks escapades.  One doctor even said "it was the Superbowl of their field."  Oops!  Hopefully all of you were safe for Independence Day!

After fighting with our insurance company Sunday through Wednesday, we were finally able to fill the prescription and get Tyler on the right path again.  He still has pain and sensitivity to light, but actually noticed some improvement yesterday.  I am worried that this 7 day course will not be enough to get him OVER this bout with shingles and am not looking forward to yet another fight with the insurance company to get them to pay for the medicine he needs.

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!