This is what we pray...

that Ash's cancer has not spread. Through telephone conversations today this is what I have figured out. Everyone wants to know that the PTLD has not entered her CNS. Even though it is not likely it would spread while undergoing treatment for it, today they told me it is possible.

The surgeon is concerned with the massive amounts of sleep Ash seems to require. She is also concerned with the screaming between. Another red flag is the loss of skills and verbal ability Ash continues to have. She has never quite recovered from the hit she took after her cardiac arrest in January. We know that the first two tumors were found the week after Christmas and were assumed to be some type of a fungal mold infection in her lungs. We treated them as mold for six weeks before figuring out that they had spread and had begun to look suspiciously like cancer. In the mean time Ash suffered the cardiac arrest, CPR, and heart surgery(the draining of the fluid in the peri cardial sac and the placement of the peri cardial window). Ash had a lung biopsy, a bone marrow biopsy, and a spinal tap. The lung biopsy confirmed the diagnosis of PTLD(post transplant lymphatic disorder). The bone marrow biopsy told us that it had not spread into her bone marrow, but it also told us that it was not as weak as we had hoped(falling into the realm of something like monno). The spinal tap came back telling us that it had not spread into her brain and spinal fluid therefore we had a chance to get rid of it. If it had been inside of her CNS then we knew that the chemotherapy drugs would not be able to pass through the blood brain membrane and we would not be able to do anything for her. So as far as we were concerned she had cancer, but we were going to be able to squash it before it took our baby from us. We all agreed( the transplant team, the oncology team, and Dave and I) that we would begin chemotherapy immediately. Now that we are in our 4th cycle of 6 we are concerned about the possibility of it spreading to her brain. Thats what the return to Omaha will be about.

I realize this is a lot to take in and try to keep up with. I hope I am not causing confusion. My goal is to help everyone understand where we are and what we are hoping not to be battling. I know it is always helpful to know what to specifically pray for.

The return visit to Omaha will be decided upon next week depending on a hopeful appointment with a pediatric neurologist in Dallas. They have agreed to review Ashley's case on Wednesday and decide when and if they will take a look at her and give an opinion. If they do not take her as a patient then we will return to Omaha for tests and evaluation and develop a further plan.

When I think of the possibility of this cancer being inside my sweet Ashley Kate's brain it makes me tremble. I get scared and then I get angry. My gut tells me that it is not there and that all of Ash's bad days are related to her current course of chemo therapy. That is my gut. My head spins with an overload of information and possible explanations. My heart just hurts. It breaks and when I think it can't hurt any deeper I am proved wrong. My faith tells me that my God has a plan for my Ashley and even though I don't know what it is I can still trust Him with my sweet girl.

So how is she today? She is funny. She is silly. She is ornery. She is Ashley. She has stayed awake for longer periods of time. She has played with some rattles and small toys. She has repeatedly pushed her brothers elbow off of HER carseat causing us all to laugh. Several times throughout the drive she would burst out with a squeel to let us all know she was still the boss even though we had strapped her into that silly seat. She has no appetite and it seems as though she has forgotten how to eat. Her forgetting things like this is one more reason there is concern. One day she will clap and the next she will have forgotten how. Some days she can figure out her toys and then a while later she looks at them as if she has never seen them. The new skills she picks up don't seem to stick around for long and she struggles to remember the ones she has lost. I know I have said this before, there are good days and then there are bad days. At this point I just find myself praying for more good than bad.

This weekend I would like to forget about the bad and just concentrate on the good. We are all together. We have the opportunity to laugh together, to play together, to sing together(you know thats not pretty, but Ash likes it), to pray together, to enjoy our time together, to be a family of 5 together. My purpose this weekend is to take lots of pictures of my children playing together and loving life. I am busy storing up memories. Thank you for your prayers. I feel them surrounding us. Good night and may God bless you and your precious families. Trish