Thursday, April 24, 2008

MD Anderson

We just got home fr0m Texas. It was a great trip with a lot of information. It is a place I would highly recommend.

It is a big place. About 9 million square feet. When we walked through the main doors, we were greeted by volunteers offering to guide us to where we needed to go. A volunteer grabbed our appointment card and said, "Follow me". We followed, watching the back of his head. He asked where we were from. I said Columbus, Ohio. He responded that he grew up in Columbus, and still owned a home in Dublin. I said we live in Dublin. He turned around and said, "Kyle Alfriend?" It was David Baker. Our back yards bordered each other for 7 years. About 7 or 8 years ago his wife passed away from breast cancer. David moved and I lost touch with him. As it turns out, he got remarried to a cancer researcher at the James in Columbus. She recently took a research position at MD Anderson, and David now volunteers at the hospital. Small world.

Then, as we sat down on the cancer clinic to fill out some forms, I heard "Is this Tyler and Kyle?" It was Bob Piniewski, Ajay's dad. I have mentioned Ajay a couple of times on this blog, and Bob has commented several times (always signing as Ajay's Dad). On the list of blog links to the right you can read about Ajay and his courageous battle against this horrible disease called Burkitt's. Just like Tyler, Ajay devoted his life to sports. He fought cancer with everything he had in him. Bob lives in North Carolina, but was in Houston on business. Unfortunately we got called back to the doctor just as Bob and his sister got there. I would have loved to spend more time talking with him. He is working on some very cool ideas to increase awareness of these brave young people fighting in a life and death struggle.

As we went down the hall to see the doctor I received a call from Sheryl, Brett Workman's mom. She was calling to give the name and number of friends in Houston that were offering to help out in any way. I also received 5 other emails or calls from people in Houston whom I have never meet. They all have been following this blog, and were offering any help. What a great welcome.

Then everything turned bad. Real bad, real fast. The doctor walked in wearing a Michigan lapel pin. He then just stood there, staring at Tyler's Ohio State tee shirt.

Actually, Dr. Rytting is a great guy. He spent a lot of time with us, reviewing all the records and answering all our questions. Not once were we given the "because protocol says so" answer. This might sound weird, but one of the things I appreciated the most was that when he did not know the answer he said "I do not know". Unfortunately, there is just a lot they do not know about Burkitt's. We have a lot of information to absorb, and a few decisions to make, but it was a great trip. Very helpful and informative. We now have a resource we can trust.

MD Anderson has identified that something is going on very different with the teenagers. They now started an AYA focus (Adolescent and Young Adult) where they are paying special attention to the 15-25 age group. They have seen that the "one-size-fits-all" approach of protocol medicine is not working.

The trip was very hard on Tyler. But he was brave and pushed through it. He received blood counts this morning, and his white counts are very low, about 0.16. Red blood and platelets are borderline, but the decision was not to do any transfusions at this time. Blood will be checked again on Monday.


Anonymous said...

Three really cool things:

1. Those who have fought the pediatric cancer battle are really there for each other in a big way -your former neighbor, Ajay's dad, Nancy Levin (Miles' Mom), other people you know, and strangers. People who have been in this war don't just walk away, regardless of how their own experience ends.

2. The state of Texas has refused to give in to cancer as the federal government has, instead choosing to take a leadership role in the fight against this unconscionable killer.

3. While some doctors and others may be arrogant or abrasive, many of the caregivers are fighting just as hard in their own way, and devoting their lives to the battle just as hard as the families.

All you warriors rock. You're in my thoughts every day.

Anonymous said...

Great to hear that the second trip was better than the first. Protocol is BS in my opinion. I always wanted to ask the doctors if this was your child, would you follow protocol? Keep pushing. You are an inspiration to all!

Stef Tarapchak said...

Glad to hear that the trip to TX was good. We continue to pray for wisdom and guidance as you continue on your journey. Miss you guys!


deyerles said...

Hey Guys,

Glad you found encouragement at Anderson's and are back home safely. Tyler rest up and take it easy. I hope after some rest all the decisions you need to make will be clear. Fight to Win!


Anonymous said...

God bless you Tyler! We are praying...

Anonymous said...

wow, Gods hand was on your whole trip!
stay strong and lean on Him.

Connie Lukacs

Anonymous said...

Things sound great, I am so glad to hear it. The only thing is...Michigan? Really, I know they have a "university" up there but do they even require that their students are able to read? :)

Seriously, I am glad you guys have found what sounds like such a great place. God bless.

--Jim Bennett

dina b. said...

That's amazing about running into David Baker down there! Also, it's apparent how many lives you've touched over the last half year and how many people care about you and your family. It sounds like you got a wealth of information between the two trips. You've learned a lot, and we've all learned a lot through you; so thank you for that!

Glad you guys are back safe & sound!