Tuesday, February 26, 2008

5:31 AM 2/26/2008

Yesterday was a success on many different levels. First, Graham survived his fourth birthday. Somehow, the boy ended up with a green face. His favorite color is green so I guess the teacher threw caution to the wind and let him make his statement to the world. Somehow, when I picked my child up from school he was still grinning from ear to ear and looked like this!

Please also note his brand new Great Wolf Lodge t-shirt , his favorite lunch of all time (a bologna and American cheese lunchable), his superman napkin and, of course, that unforgettable smile. Graham is much like his father - obsessive/compulsive but amused by the simplest of things. Who could be prouder? Last night we all celebrated at home. Sydney and I went to McDonalds to pick up happy meals as requested, we ate dinner, opened presents, and snuggled to watched Evan Almighty. It could not have been better - simple pleasures my friends.

The second success was Sydney's quadrilateral bone marrow aspiration and bilateral biopsies. I am, of course, ecstatic that she made it through the procedure without incident. She came out with bandages all over her little body but was happy to see that each had been personalized with hearts and happy faces from Dr. Granger. It was a fairly long procedure taking almost twice as long as normal - go figure. Dr. Granger stepped out to talk to us for quite awhile. In fact, we were still talking when they called us back into recovery. We talked about a myriad of things neuroblastoma but, surprisingly, very little about Sydney. It was a great chat. It is such a relief to see the doctor come out of the OR to tell us that everything is okay that we are often giddy. It must be so strange from her perspective.

We were quickly ushered back into the recovery room. On the way in I received a call from David Podeszwa who has been helping me gain an understanding of Sydney's arm from the perspective of an orthopedic surgeon. I wasn't on the phone with him for 2 minutes when Dr. Eames came fluttering in. Okay I say fluttering which is probably a bad description. When Dr. Eames comes in the door it is as if she should have background music (as in, The Right Stuff). Everything goes in slow motion. She has purpose when she walks. I always know answers are coming. I ended my call with David.

As always, Dr. Eames was warm and kind. We started with chit chat but quickly moved to the facts. Sydney was one of the cases in front of the tumor board on Friday(?) night. The tumor board was made up of all of our favorite names. It includes a group of people that have followed and cared for Sydney since her diagnosis - her surgeon, all of the oncologists, her radiologist, and a myriad of others. The meeting was to assess what to do with Sydney and where to go from here. It is no doubt that Sydney's case is unique. Her history is like no one else. The current theory, based on all of the evidence, is that it probably is disease. We are still waiting on a several tests and second opinions but the idea is that this is disease that has probably been there forever. The belief is that it was probably managed very well with all of the immunotherapy that she has had over the years. Looking at the structure of the radius they believe that Sydney's body has been doing an admiral job trying to wall off the disease and that this is, perhaps, a very old lesion. In this context this is good news. Given the fact that this is probably disease, her body is doing a fairly good job of containing it. This could even point to a very chronic and slow growing derivative of her disease. This is far better than the alternative which is fast growing and aggressive disease. In the end, this understanding of her disease gives us permission to move forward pending the second opinions of her scans. I am also pleased to say that they have agreed with my theory on what and how to treat Sydney (further proof that I am not entirely nuts) and secured a spot for her in the trial that I was hoping for should we move forward. This is good. Trust me. If it is disease, at least all of the correct pieces are falling into place. Don't ever forget how much worse it could be. So far, we are very lucky.

Bottom-line, we still don't know for sure what this is. Yes, it still reeks of relapse but it is no guarantee. All of a sudden as we begin to get our reviews of the scans back a few other differential diagnoses are starting to raise their heads. I have heard rumor of other tumors both benign and malignant to explain these findings. A biopsy of the arm is still not out of the realm of possibility. It will be an interesting few days. We still must continue to hope and pray that the marrows come back clean from all of these different labs and for clarity for all of those reviewing her scans. For better or worse, she will have one of the most viewed arms in the history of man. She is literally being looked at from coast to coast. This is obviously a trying time but I am so comforted by all of those that are working so hard on behalf of my daughter. I know I have no guarantees but to know that we are making decisions on the best information available from experts across the country surely takes a large weight off of my shoulders.

She is not just my purpose.

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