Transplant meeting.

Yesterday the whole gang, minus Albert who is working hard in Boston, got together briefly with Joe's bone marrow transplant coordinator and for over 2 hours with Joe's doctor. We love his doctor. He had a lot of scary things to share yesterday, but he explained everything in a way we could all understand, and spoke so confidently about getting Joe through this. And for any doctor to sit and spend so much time with a patient is just incredible. He in fact apologized at the end for keeping us so long!

The basic story is that Joe was diagnosed with high-grade/high-risk Myelodysplastic Syndrome 2 months ago. Because of Joe's age, his health previous to the diagnosis, and the fact that he was high-grade, it was decided that a bone marrow transplant...or more specifically a peripheral blood stem cell transplant would be Joe's best chance for a cure. Statistics show that a person who goes into a transplant while in remission or with a low-grade MDS fares better than one with high-grade MDS. In the past, there wasn't much that could be done though. If you had high-grade MDS, you simply had to go straight to transplant. Risky on many levels. However, in the past few years medicine has seen many advances. Hurray and praise God! For one thing, Vidaza, or azacitidine has been shown to be effective in treating MDS. Fortunately, Joe has responded extremely well to his chemo treatments - as well as he could actually - and so he is now considered to be in a sort of remission or low-grade MDS level.

We all wondered if it would be possible for Joe to be treated with chemo and move on with his life. However, because he started off high-grade, the chance of the MDS returning with a vengeance is very high. His current chemo treatments might keep him in check for a bit, but it wouldn't make things go away. Stronger chemo treatments have risks as well.

That brings us back to the transplant. Again, there are risks involved, but in Joe's case, the positives seem to outweigh the negatives. It is going to be tough, but Joe's tough and I know that he'll get through this, and I know all of you know that too! It is quite beneficial that we have God on our side too!

So, Joe has a couple *possible* donors. We are calling them the "back-up plan!" Joe's coordinator is still searching for a PERFECT match, and we're all very hopeful that will happen! Hopefully Joe will be able to have his transplant by the end of the year.

When Joe's definite donor is identified, a date will be set for the transplant. Joe will be admitted to the hospital about a week before the transplant day. During that time he will be getting chemo treatments that will kill off all of his bone marrow. Meanwhile, his donor will be getting filgrastim injections in preparation for donation. The "big" day is called "Day zero." It will be Joe's new birthday. (The lucky guy will have three birthdays! The day of his birth, the day of his baptism, and the day of his transplant!) The stem cells will be delivered to the hospital, and Joe will receive the transplant the same way he gets blood transfusions. Then...and this is the fascinating part...assuming all goes as planned, he will get to go home that day or the next. Hospitals are germy places, and home is therapeutic on so many levels. So Joe gets to go HOME to recover. But of course, there is a catch! We will be required to go to the hospital every single day for 30 days. That is the critical period. Joe will be closly monitored and tested to see whether his body accepts the new cells. All sorts of complications might occur and some are expected, but Joe will be in good hands! The hospital visits will then taper SLOWLY. The next huge marker will be day 100. If all goes well up to day 100, Joe can start easing into a more "normalized" life.

And so that is the summary. A lot to digest. But again, WE CAN DO IT! Or more importantly, JOE CAN DO IT! Do pray for him though. He has so much on his mind, and I think it is impossible to fully grasp what he is going through (even with his very eloquent and honest blog this week.) I know that he is strong and has what it takes to get through this. But I also know that he has hundreds of people who are fighting with him and praying for him and loving him. Hundreds of people fighting, and praying, and loving also equals hundreds of opinions on how he should think, act, live, and respond to his diagnosis. It gets tough when Joe is simply trying to wrap his brain around what he is living. Of course we need all of you to fight with Joe, and pray for Joe, and love Joe! We cherish all of that love. Just this week...pray for peace in Joe's heart. I love that boy with all of my heart, and like most of you, I wish I could do more, more more! But at the same time, I know that sometimes, I need to just be, so that he can just be.

It is crazy, but Saturday marks 2 months since his first hospital admission. It's funny how time seems to pass so quickly and so slowly at the same time. In many ways this was the longest summer ever...but at the same time, we missed it!

We got to visit with many attendings and residents and techs in the radiology department yesterday. Thank you for all the smiles and encouragement! We loved being able to see all of you!!!!

I leave you with one more request. Lift up Mayor Bob O'Connor's family in prayer.