Wednesday, July 18, 2007

5:22 AM 7/18/2007

Yesterday was an incredibly emotional day. Paul's funeral service was incredible. I know that sounds strange but it really was beautiful. Nearly all of the men dawned Hawaiian shirts and the women were colorful as well. It was truly a celebration of his life. In some ways it was unlike any other funeral I have ever been to. Other than for introductions, the only speakers were Terrill and Leigh and they did an incredible job giving us insight into Paul, their journey, and what they learned from this amazing little boy. Being a father of a child with neuroblastoma I was amazed by Terrill's ability to share with the congregation. I can't imagine being anything but a puddle of mush much less standing in front of a group of hundreds to speak about the child I just lost. I would be a wreck and yet he did it with such calm dignity. I felt all of his words, some funny and other more serious, and once again I was left with a since of admiration for this family. Leigh took us through a bible verse and what it meant to her and their family. I have never watched someone with so much grace as she let us follow her through the words and story. Her reflection and insight were clear as day and it became more and more apparent what an incredible family this was. As you probably know of me by now, I believe in God, am comforted by religion , and believe in the power of prayer, but I am not a particularly religious person. This service gave me some insight that I had never seen before and Terrill and Leigh, once again, schooled me on the power of perspective and I walked away from another meeting with the Saxon's feeling enlightened and whole. It was a truly beautiful and touching ceremony and I am so glad that they took the opportunity to share with us. I know, it hardly seems like I am talking about a funeral. It truly was a celebration of life. I forgot who said it but it is true as day - there are too few Saxon's in this world.

As a side note to the service, I was delighted to see Dr. Giselle Sholler there. For those of you who don't know her, this is the oncologist from Vermont that took such good care of Paul when all of his options seemed to be gone. Paul participated on her Nifurtimox trial and she became a large part of his treatment and their lives. Giselle spoke with them often, especially during the last few weeks of Paul's life. It was touching to see her travel all of the way from Vermont to be there and it was a clear indication of her commitment to our kids and the bonds that we have with our children's oncologists. We are a very unique group of families, physicians, caregivers and friends and it is unlike anything I have ever experienced. For being brought together by something so evil it is amazing how incredibly beautiful our bonds are. We are a family.

I know many of you are waiting to hear an update on the mysterious bump on top of Sydney's head. Trust me, it has not left my mind either and I spent a pretty sleepless night thinking about it. In fact, I don't actually remember sleeping last night although I am quite certain that I did at some point. I spent the night tossing and turning and thinking about it. It is not clearly neuroblastoma. If it were you can bet that I would not be sitting here. It is close enough to a lump that it has us significantly scared. It is about the size of a dime. I believe it is larger than yesterday but Lynley thinks it is about the same. We have considered drawing a line around it but were wanting to spare Sydney the embarrassment of having a circle drawn on her head. Regardless, it is about the size of a dime. It is not itchy and it does not cause her pain. At this point it is more of a bump and less of a lump but still no good. The only saving grace is that the center of the bump has a bit of a different texture. A small area on top of the bump (about the side of a pencil eraser) has more of a scaly texture. The color is nearly the same as her scalp and it takes quite a bit of concentration to make out this area. This is really the only saving grace. In a way, it is this characteristic that shares its similarities with a bug bite. I just wish it were reddened or itchy - or both. In short, it is not clearly anything. It is small enough to be a bug bite but unlike one enough that it could be something more sinister. We will see what this morning holds and make more decisions from there but it would not surprise me if we ended up at Cook's today.

My heart is skipping beats again and my breaths feel shallow.

My purpose is clear - the answers are not.

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