Tyler Sighting

For a few lucky individuals, there was another Tyler sighting on Saturday evening. After so many months of hibernation, we enjoy these new opportunities to see a few friends and family, so Tyler and I drove to the Museum of Glass in Tacoma to help celebrate at my cousin's wedding. While we are still trying to be careful about exposing Tyler to health dangers (like pets, bacteria, viruses, etc), it was very important to us to help welcome Heather into the family.



Aaron and Heather had a beautiful ceremony and we enjoyed the opportunity to wish them well. As they have been dating for seveal years, we have been able to get to know Heather a little bit and I can honestly say that she is lovely both inside and out! And Aaron is one of the good guys, so it was lovely to see them become husband and wife.

Tyler and I also enjoyed the opportunity to catch up with family members that he hasn't seen in months. So many people in our families have been praying for us and encouraging us, that it was good to be able to thank them. Plus... it is amazing to see Tyler looking so good these days! He's growing hair again and looking stronger every day.

Life is GOOD!!!
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Memorial Day Weekend

As a sign of how much better he feels, Tyler is on a small road trip this weekend. He headed over the Sequim to spend the long weekend (with an extra day on each side) with his Mom and her husband, and just get away from home for a few days. I wasn't able to join them, as I had to work both Friday and Tuesday, but will take advantage of the opportunity to go visit my sister and baby niece.

Although it has been a few weeks since we last posted, life has been moving along well for both of us. I've been working full time, playing a little bit of soccer, and enjoying the sight of a happy husband. Tyler has been eating nonstop, knocking a few golf balls around, and getting stronger with increased activity and physical therapy.

Appointments with Dr. McGee have been good, as Tyler's blood counts continue to stay in normal ranges. Tyler is headed to the doctor about once a week initially, but will be dropping down after a month or so of good blood tests.

Tyler still is not showing signs of GVHD, and is continuing to decrease the amount of Tacrolimus that he takes each day. He's currently at 3.5mg per day, which is down from a regular dose of 5.0mg per day back in April. He actually was much higher when he was first released from his final hospital stay (in January), but the level of Tacrolimus in his blood was tested twice a week for the first 100 days and his dosing adjusted accordingly. I'm hopeful that he will continue to be strong and healthy as the drug is lowered further.

He is also continuing to take Tasigna, the leukemia attacker that he was on before the transplant. They estimate that Tyler will continue on this drug for at least 1 year to reduce the risk of a relapse. At the 1 year mark, they will let us know about continuing with the Tasigna or not. I kind of hope that he gets to stop that drug as well, but also don't want to risk a recurrence of the leukemia.

If things continue to go well, then Tyler may be able to resume his regular activities gradually between the 6 month to 1 year mark. We had purchased season tickets to the Sounders last spring, and Tyler has been unable to attend any of the games because of the risk of infection in large crowds and the fact that we stand for the entire game in most of the stadium. He's currently in training for the standing thing, but we are going to evaluate whether or not he can go to the June soccer games.

CML Lunch

We were invited to lunch with some other CML'ers just over a week ago. Sadly, 3 of the 7 people couldn't make it at the last minute due to illness. Happily, the other couple that made it to lunch was Hans and Cynthia! We met little Alex (their baby son) for the first time and got to catch up with some of our dearest friends at a favorite restaurant. We couldn't have asked for a better meeting!

They look fantastic and seem to be juggling the demands of a 2nd child as easily as they do everything else. I'm always amazed by how much they accomplish in their free moments! I'm much more inclined to sit and do nothing during my spare time. ;)

We spent a considerable amount of time with Hans and Cynthia while dating and it was fun to recapture some fo the good times that we have enjoyed with them over the last several years. I'm thinking that I can't let that many months go between visits with them!

Later that evening, Tyler came out to watch the Coed soccer team play an early game at Marymoor. I think every member of the Coed team mentioned to me how great it was to see Tyler there. I had to agree. I caught myself grinning like a fool every time I caught sight of Tyler on the sidelines.

In case we haven't said it enough, Tyler and I are both thankful for good times and great friends!!

Dinner and a Movie

My husband talked me into a date night last night. I can't believe that we are finally able to get back to normal things, like going out to dinner and a movie. We were so excited to get out and spend time with each other!

Now that he is past his 100 day mark, Tyler is feeling more comfortable being out in public. We still have to avoid large crowds and sick people in general, but we have more freedom to ge back into our regular life.

We also had our first appointment with Dr. McGee yesterday afternoon and it went extremely well. We have a great deal of confidence in the staff at Dr McGee's office, so we were happy to be under their care again. Tyler will be going in for weekly appointments initially, but we are hoping to taper off as time passes and he continues to be doing well.

No obvious signs of GVHD and Tyler continues to pack in the food, so he seems to be feeling good again!

Support

I want to take some time to thank everyone including family, friends, and new friends from around the country! Your support has been so important to both Mandy and I, and we are forever grateful. At our last clinic I was reminded (even though Im aware) that we're less than halfway through this recovery. The doctor compared it to a 100M hurdle race and that I have just cleared the 4th hurdle (of 10). I too feel this way because of the difficulty transplant patients have with GVHD, and also the chances of relapse. We celebrated the 100 days but there are many milestones to reach over the next couple years.

I wont be able to work until early 2010, unless Im showing no signs of GVHD or other complications. Its very strange to be unable to work, go to crowded restaurants, go to Sounders games, attend gatherings, etc.......but I know Im getting closer to the day I will be able to do these things. Your support keeps me going and I am overwhelmed with the response to the blog.

I know some of the people that follow the blog are fellow CML patients and I want you all to know that I constantly pray for all of you and hope that your recovery/journey will be smooth. One thing that has really hit home during this process is that nobody is immune to loss or having a loved one suffer. We all have or will experience this in our lifetimes. I have also learned that I need to make the most out of life and cherish all the great things this life holds.

Recently my best friend suffered a great loss and listening to her life story reminded me that life is about giving and sharing personal strengths. I was very sad also to lose someone that had been influential in my childhood. She also had battled cancer over recent years, and her battle gave me strength to fight my own battle!

Thanks again to everyone for the support youve given, and continue to give! Im doing better every day and am looking forward to conquering the upcoming hurdles.

Tyler

Nurse Appreciation Week - May 6-12, 2009

We just wanted to give a shout out to all of our wonderful nurses from the SCCA and UWMC during Nurse Appreciation Week. Nurses are true partners in the care of any patient and we were amazed by how much we relied on them in so many ways. With the nurses we worked with, they had been through so many of the same things with other patients that they were able to explain to us what might happen based on their experience. You could see the empathy that they had when Tyler was in pain and the sensitivity they had to deal with the less glamorous side of nursing.

This picture shows Jackie, our primary nurse from SCCA. She was AMAZING and we are definitely going to miss seeing her every week. I don't know how she was able to keep all of Tyler's details clear over the last 9 months, but she was a point of consistency for us throughout our time at SCCA.

Day 100 - Free at Last!!!

We had our FINAL appointment at SCCA today and we're still in shock! Tyler, Andrea, and I met with Jackie (his nurse for the entire time we were there) and Maria (his doctor this month) to discuss whatever details they had for us. The biggest thing they warned us about is to watch for signs of GVHD as the Tacrolimus level is being tapered off over the next 3 months. Apparently chronic GVHD occurs in about 60% of transplant patients during months 4-12.

Then they pulled his Hickman line out. It's strange to think that Tyler will no longer have direct access into his veins. In fact, he will have to get poked for his blood draws from now on, rather than having the blood drawn from his line.

Tyler had been nervous about this procedure, as they had to insert the line with a surgical procedure, directly into his vein. But everything went really smoothly. The doctor felt along the line (just barely visible under his skin in the picture above) and basically just gave a few tugs to get it out. It did hurt as they pulled it out, but Tyler held strong anyways.


In a few days, I'll be able to hug him without worrying as much about smacking his line with my naturally klutziness. He's developed a technique of guarding against any sudden moves that I might make.

We are incredibly thankful that this phase of the Battle is over and are looking forward to embracing "normal" life again! We'll continue to post, as the blog has become a great way for us to share both highs and lows and we don't really know what comes next in this battle we are fighting. It's been 9 months since we began this journey towards transplantation at full steam and we're delighted to announce that the outlook is good today!

Thanks for celebrating with us!! We'll try to touch base again over the weekend.

Day 96 - Our Many Blessings

Today I attended a lovely bridal shower to welcome my cousin's fiance into the family. I was a little bit surprised at how many of the friends and family members there shared their excitement with me over Tyler's recent progress. It was an amazing thing to be blessed by so many others unexpectedly. Many of these ladies have been praying for Tyler's recovery over the last several months and it brought home to me that Tyler and I don't really know who out there is reading our blog. We thank you, both known and unknown, for sharing a few steps on this journey with us.

We have been incredibly blessed to be surrounded with love at every turn in the road and we hope to repay the many favors we have been granted as we get our feet back under us again. I wish everyone had the opportunity to be touched by so many others, without actually having to live through this illness stuff.

As an added bonus, I got to hold my niece, Rachel for part of the afternoon. Although I'm far from a pro, she was willing to suffer through the experience and "bond" with Aunt Mandy a little bit. She's just celebrated her 1 month birthday and I didn't feel those extra 2 pounds she's gained over the last month at all. Until I let her mother reclaim her, that is. Rachel was the 4th of the babies born into the Keith family over the last year, and three of them were actually at the shower today. It was a baby fest!