Wednesday, February 13, 2008

4:41 AM 2/13/2008

Yesterday, on the way back from Dallas, Dr. Eames called. She spent a little over 20 minutes on the phone with me. You know, after being away from her direct care for so many years, I had forgotten how comforting she was. I knew there was a pretty good reason that we had named Ainsley after her its true impact had just temporarily left my mind. It is difficult to describe. Even with all that is up in the air, she seems so incredibly in charge. She is so reassuring. I would follow her anywhere and do what ever she asked. She was very clear in our conversation. She left no doubts. I did not know where this journey would take us but I was reassured that she had a plan and that she knew exactly what to do. Somehow I had clarity without a single clear answer.

In actuality this is all very simple. We have a spot on a bone scan. For those other parents that have some experience in looking at these the spot appears to be about a centimeter (in life size) and has about 1/3 the intensity of a joint when compared on screen. The spot is not black. It is dark grey. The spot ccould be cancer, trauma, infection, or fluke. The other thing that we know definitively at this point is that it truly is on her right arm. This still hits me as strange but it is something I have come to terms with. We do not believe that this is one of the spots that lit up originally at diagnosis but we do not know that for sure.

Dr. Eames said it was worrisome but not to get myself into a tizzy. We still do not have enough information yet. This still can be nothing. Don't give up hope. We just need more information. On Thursday we had previously scheduled a MIBG scan and bone marrow aspiration and biopsy. We will continue on with those. She has added a x-ray of the right arm on Thursday and an MRI at Cooks' Northeast campus on Friday afternoon. We hope to hear something on the bone marrows and MIBG as early as Thursday evening or Friday morning. I honestly don't know when we will hear on the MRI. Based on all of this we should be able to form some type of opinion as to what is going on. We want the MIBG to be negative and I should have a pretty good idea from looking at the scan myself as to whether or not this spot lights up. We obviously want the bone marrow aspiration and biopsy to come back negative. I think at this point we would like for the x-ray and MRI to show a fracture or nothing at all. A hairline fracture or stress fracture would be a definitive answer to the bone scan where as anything unremarkable would leave us with out any real explanation as to the bone scan. In short, disease anywhere would be bad. A discovery on MIBG, in the bone marrow aspiration, or in the biopsy would be catastrophic.

In the end, Dr. Eames did not provide me with the answer that I was looking for but she did comfort me. She gave us a plan and a direction. She was clear. She was exact and she left no doubt. Somehow, she gave me strength. Once again, I owe her.

Yesterday afternoon Sydney had a little talk with Lynley. "Mommy, is my cancer back?" She really is wiser than words. As always we were completely honest with her.

Lynley: "Honey, we don't know. The bone scan showed a spot on your arm but we don't know what it is. We are going to hope and pray really hard that it has not come back but, if it has, you have the best doctors in the world to take care of you."

Sydney: " At school I did not want to eat lunch. My stomach was very nervous and it did not feel good. Am I going to lose my hair again? Will I still be able to play with my friends? Will I lose my hearing?"

Tough questions and there were more! Her mother would spend quite a bit of time talking to her and I would do the same. I hate that she is burdened with this. It hurts me that she is worried. It is obvious that her mother and I are not nearly as good at hiding our worry as we thought. I wish we could have kept this from her mind until we were sure. It is one thing for me to carry this on my shoulders. I can do that. But, not her. She should not be burdened by this fear. She is just a little girl. In the end, I was honest but tried to provide her as much comfort as possible. I told her that it could be cancer but that it could be something else or even nothing at all. I told her that we loved her and that, no matter what, we would get through it. We are all hoping and praying very hard.

For some unknown reason I spent the afternoon researching bone scans instead of working. It was a useless activity but I could not help myself. It was nervous energy and something to do that felt worthwhile. In the end I know a lot more about bone scans but nothing much that gives me much assurance one way or another. It took about 3 hours to figure out that although I knew a lot more I really knew nothing of value. I was simply filling time until I could go pick up the kids.

I just want to sit and hold my purpii.

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