Friday, May 23, 2008

Good News from The James - The Light at the End of the Tunnel

One of the most daunting aspects of dealing with a child with cancer is sorting through the information and decisions. As you would expect, the best doctors are extremely confident in their opinions. However this does cause a problem when they all disagree with each other, and predict very dire consequences if we listen to the others. Some doctors take the time to honestly try to explain the pro's and con's of the various points of view. Others simply take an arrogant "I'm right - they are wrong" attitude. We have encountered both extremes. Discovering the best treatment for Tyler has involved doctors from Columbus Children's, The James, MD Anderson, Dana Farber, Children's of Philadelphia, St. Judes, Slone Kettering, and Stanford.

This past week Dr Caligiuri, CEO of The James, stepped in with his staff to meet with Children's and help sort through all the options. The result: very good news. The bone marrow and stem cell transplant discussions have been put on hold. The experimental maintenance drugs have been put on hold. Increasingly, the opinion is that Tyler may soon be in remission. It is possible that he is there now. At this point we are going to complete one more round of chemo (the 8th) as soon as Tyler's blood counts come back. And then we are "done". Tyler's very first goal, back in November, was to keep up with school and return to join his classmates for his Junior year. That will now happen. The light at the end of the tunnel is getting brighter.

As we have seen with so many others, relapse is a significant concern with Burkitt's. Remaining in remission for 90 days after the last chemo is a significant milestone. I will be running the marathon just as we are celebrating Tyler's 90 days of "relapse-free remission". Every day beyond that reduces his chance of a relapse. "Cured" for Burkitt's is most often considered relapse free for 12 months after the last chemo. Therefore Tyler enters his senior year completely "cured".

Tyler is now getting blood work done. He will be back a Children's tonight to continue his physical therapy. Citius, Altius, Fortius (Faster, Higher, Stronger - Olympic motto).

Tyler - 7
Cancer - 0
One more round to go

Team in Training: Still right on track with the training schedule. Only 446 miles remaining to the starting line in October. One of the trainers told me that just signing up for the training was the hardest part of the training. Not to be critical, but I have a real good idea that is a lie.

On another note: Please continue to keep Sinjin in your prayers. They are currently facing some very difficult choices.


Lisa Slonecker said...

We will be celebrating with you as we are certain those milestones will be met! We are thrilled that you have a plan that you can have confidence in. You deserve it!

What great news on a long holiday weekend. We know the path ahead is still difficult, but you have a certain path now and the aim is clear.



Kylee said...

Let's get you done in time for the Survivor's Lap at Relay on June 21st! Then we could walk together!

Grandma Bonnie said...


I am loving the score. Way to go! Only one to go and you are home free. A lot of catch up waiting for you. Walking the Survivor's lap with Kylee will put icing on the cake.

We sure hope business as usual includes a trip to California this summer.

Miss you,

Grandma Bonnie

Anonymous said...

Alfriend's - Dr. Caligiuri is a cousin, albeit distant but still related- how great he helped out. Caligiuri is my maiden about that.

Carol Sward

Phemia said...

Great work.