Seasons Greetings All!

Last Thursday when I wrote, we were on our way to the Cleveland Clinic. Apparently, I have left you all with a "cliff hanger" because we have had several inquiries about what happened there.

Since we had made only a small amount of progress, and we ended up with a "hurry up and wait" situation, I was waiting until we had some real news to relate. Unfortunately, we still don't, but here is what happened.

We met with Dr. Macklis at CC. He was a great guy, and we really appreciated him fitting us in right before his vacation. He told us, both on the phone and again in the office, that brain tumors were not his main area - perhaps 10 - 20% of his practice. He said he would treat Dan, if we wanted, because Dr. Black had referred him, but that there was someone else in his group that did 80% brain tumors, and if we wanted him, that would be ok too.

As for treatment, CC uses the 1p deletion test for treatment planning (Havard does not). So, Dr. M said that if the tumor does have the 1p deletion, he would recommend chemo first, and then save radiation for when the tumor recurrs - months to years depending on the response to chemo. If the tumor is 1p "retained" then they would do radiation first, and hit it much harder with chemo.

When we left Boston, they said we might have the test back by last Friday, this week they said that it might be back this Friday. So, we wait til then.

There also remains a question of whether CC is the appropriate place for Dan to go for treatment. It is a 3 hour drive, and radiation is a daily event for 6-8 weeks. Chemo might not be as difficult there, but probably we would want to go with a "team" approach rather than split futher treatment.

In the meantime, Dan continues to sleep, withdraw from decadron, walk as his energy allows... ie, recouperate. Dan says "I also continue to contemplate how to help myself heal physically, mentally, and spiritually as we plan this Western Medicine approach to brain tumor treatment."

Also, "I have a lot more things to add and to share, but I am just not strong enough to write them yet."

I have taken this week off from work and begin again Monday 12/30. Phyllis and Vally are coming to spend a week to help. We are trying to figure out more long term - perhaps live-in - help for the future. Any ideas would be appreciated.

So, there you have it... and we will let you know more as we know more.

Much love and many blessings in this time of peace and transition, Abi and Dan