A Bittersweet Moment

Well, I didn't quite expect the outcome of our meeting today with the physicians, but we definitely feel good about it all. We are coming home. We are excited to get a feeling of normalcy back into our lives. Hopefully this is the last of our cross country journeys for the year, but we hope it is not the last.

We sat down this afternoon with Dr's Liebsch, Friedmann and Thiele to discuss the outcome of the CT scans and their thoughts on the matter. Dr. Liebsch started by telling us that surgery is still not an option due to the size and location of the tumor and after reviewing the most recent images in greater detail, he does not believe that radiation is a worthwhile option. The tumor does not appear to have receded or advanced beyond its original envelope from when we arrived in Boston, but it does appear to be too large for effective radiation. It still extends down the cervical spine about 2/3 of the way and according to Dr. Liebsch it would require an enormous dose of radiation to handle it. The bottom line is, the risks far outweigh the benefits in Jared's case, and we all feel much more comfortable with this decision.

So, with surgery and radiation out, we are placing all bets on Rapamycin. All three physicians felt that it has been effective thus far and would prefer to get as much out of it as they can. Getting as much out of it means that we will return home for 3-4 months and be referred to a local neurologist and medical oncologist for local care. The physicians here, in Boston, will still maintain oversight of the whole treatment regime, but they will do it long distance. Around the first of next year, we will begin another cycle of imaging for Jared.

While the doctors are very optimistic, they are also very realistic. Before hauling our family out to Boston in 4 months they would like to have an MRI performed at Primary Children's Medical Center. This MRI will be very out of the ordinary, as compared to previous images. The MRI will only be done on the region from the neck to the bottom of the abdomen. They are concerned that it will metastasize. This is obviously the worst case scenario, but is also a very real scenario as others have suffered this similar fate. If this is our fate in 4 months, then Dr. Liebsch said that there really is nothing more to do except allow Jared to be as comfortable as possible.

The important thing now is that Jared is not at that stage and we will continue to provide him with the best fighting chance we can. If in 4 months the abdomen MRI comes back completely clean we will make our way to Boston a second time for a reevaluation of the tumor. What a great moment this would be, to arrive in Boston to find out the tumor has receded from its original size. Dr. Thiele was very optimistic that Rapamycin would be Jared's lifeline until another option is available. We have no other evidence otherwise at this moment and will embrace this wholeheartedly.

Another chapter of this journey is coming to an end and we thank you all for your love and support. Please continue to pray for our son. These upcoming 4 months may be the most important span of care that Jared will receive up to this point. We are uncertain about Jared's future at this moment, but we have definitely learned to appreciate the present a bit more. Prayers have been answered, aching and stressed hearts have been calmed and our faith in a loving God has been strengthened. God bless all of you, who are right there along with us. We love you and pray for the Lord to bless you in your lives for your unending love and support displayed to our family. We look forward to returning to our home Friday.