September 19th

Claire has been enjoying life at home for the past few weeks. As we had mentioned in the last post she was hospitalized due to some very serious types of infection. Shannon and I have again been doing some serious research and thought on the pros/cons of continued chemo. Claire is not recovering as well and there are opinons suggesting to stop due to toxcicity. She has been undergoing chemo for 14 months which is outside the standard of treatment. The agents used to fight her cancer are some of the most toxic and destructive to the body. The standard care would be to radiate but we have done all we can to avoid radiation to the damage it would cause to her young brain.

Some positive's are that Claire, when felling well, has been able to attend her preschool class at CPP. It is awesome to see the excitement and happiness this has given her. And this Friday, Claire will celebrate her 5th birthday!!

Recent tests have shown that infection is still active in her broviac ( a double lined tube in Claire's chest which is used for drug induction, transfusion, and other meds). A decision was made today to remove the broviac line tommorrow. She will undergo a minor surgical procedure to remove the line and should be back home in the afternoon. We have not decided on whether we will choose to replace the broviac next week or select another type of "hardware" for ease of induction of drugs and other needed products. This will delay the scheduled 5th round of maintenance chemo for another few weeks.

We have many decisions in the weeks ahead and we will do what we think is best for Claire. She is a amazing little girl who has the heart and soul of a GIANT. I am proud to say I am her Dad.

We will update as we can. Thanks for all of the support. You have no idea how it has kept us afloat.