Monday, July 28, 2008

Some Updates

We are about 30 days "post-chemo", and Tyler is doing very good. He continues to get stronger. We ended up back in the hospital last week, and some more scans were run. Everything continues to look great. The remaining "questionable" areas in his left lung and in his heart have now cleared up. Some of the blood counts are actually getting all the way up to the "normal" range.


We are still trying to get all the tests sent to MD Anderson for their review (getting Children's to send copies of Tyler’s medical information continue to be an absurdly difficult process). We expect all great news from those reports as well.

We are so appreciative of all the prayers and support Tyler has received from so many people. The other day I received an email from someone we have never meet. She has been praying for Tyler, and went to add Tyler's name to a prayer wall in New York. When she got there, she found Tyler's name had already been written on the wall, above the bold words "FIGHT TO WIN!" We have no doubt that all the prayers played a major role in Tyler's success.


Through this process we have meet, spoken, and corresponded with many doctors from several hospitals (8 hospitals in the U.S., and 2 in Europe). It has been critical to find Doctors who are willing to take the time to answer questions thoroughly and honestly (and are not afraid to admit when they do not know the answers). I still believe Dr. Crandall, in Children’s GI department, was the single most instrumental person in saving Tyler's life. Rather than accept the assumed diagnosis of colitis, he asked questions and dug deeper. Burkitt's is often misdiagnosed for weeks, and we knew within hours of walking into GI. Tyler's cancer was so advanced that, had it not been caught that day, the consequences could easily have been serious. Dr. Crandall continued to check on Tyler well after oncology took over.


The 2nd doctor we got to on that long day in November was Dr. Rusin in radiology. He reviewed the initial scans that confirmed Dr. Crandall's suspicions. He was the first person to use the word "Burkitt's" in my presence. It was his invaluable information that was the springboard to 8 months of education about this cancer. He has continued to be an irreplaceable source and sounding board as we looked into all the options before us.


Dr. Rytting at MD Anderson in Texas, Dr. Caliguiri here at The James, and Dr. Brad Tamler in Monterey, California have always been available to discuss / argue / debate all the many opinions and interpretations of the various treatments. They have never been defensive, nor acted offended or irritated, when I questioned their opinions or brought in the counter views of other doctors. This has been worth its weight in gold.

And we always had the best nurses ever.

The most important lesson has been to never, never, never stop questioning. Never stop fighting. Make sure you have the best medical team, and most importantly, make sure they consider you part of that team. Every parent would give anything to take the place of their child suffering with cancer. But that can not happen. The only remaining option is to become your child's most powerful advocate.



Here are some other updates...


The unbeatable Sinjin is fighting strong. All visible signs of Burkitt's are gone! It has now been 81 days since his mother fought the doctors who wanted to give up and send him home. Fight to win Sinjin!


And some more of our friends we would like you to keep in your prayers and thoughts....


Amie, a dear friend of ours, just found out she has stage IV stomach cancer. It appears to be very advanced.

Stef Tarapchak is back home after a difficult surgery. He is doing better, but the progress is slow. Refuse to lose, Stef!

Brendan Kizer, age 16, has relapsed with Burkitt's , and is having a very rough time right now.
Mason McLeod, age 9, also with relapsed Burkitt's, is now preparing for his bone marrow transplant.
Cameron Brown, age 9, just found out he has relapsed again, after two bone marrow transplants, and is beginning treatments again.
Ryan Salmons , age 18, was back at Children's with some complications.

Tyler's Grandma Alice has a lot of decisions to make. The chemo strategy for her relasped Overian cancer is not working.


Please keep them all in your prayers. Just sitting with Tyler on those worst days, not even having cancer myself, I found it so difficult to see beyond the immediate battle of the day. The prayers and words of encouragement from so many people were so helpful.




TNT Update: I started the 10 mile race much too fast, and got injured early on. I kept running, but it was the most painful thing I have ever done. I probably should have walked out the injury, but I had vowed not to walk or stop at all. I did not break any speed records, but I kept running.


When I finished, I found the nearest tree and collapsed with a groan. The paramedics at the race heard me, and turned to look. I yelled to them, "Hey guys, I'm Kyle. If they call my name for the grand prize trophy, could one of you go get it for me?" They just laughed. I then laid there for an hour and half.
I took the next three runs very easy, and I think I have recovered. I will push the next two runs harder, and then we have another 10 miler this Sunday.

167 miles down. 311 miles to the starting line.

3 comments:

Carrie said...

Tyler - you are obviously a very special guy. I love your blog. I particularly like that you mention others who are challenged with Burkitts, like my nephew Mason. I'm including you and your family in my prayers. Congratulations on your remission! What a wonderful word!

Aaron New said...

Tyler,

I just discovered your blog and I am already receiving some inspiration from it. I was diagnosed with Burkitt's just a few weeks ago and have begun blogging my own journey. Thanks for the encouragement I've already gotten from your experience. I'm looking forward to reading more.

Aaron

deyerles said...

Tyler,

Continued prayers for you, Grandma Alice and all your friends as you journey towards healing and being cancer-free!

Fight to Win!

Debbie