Thursday, April 23, 2009

A Picture is Worth a Thousand Words!

I can't think of anything else to say. We love you all....

Wednesday, April 1, 2009

Welcome to the Roller Coaster!

Ok, I did not post last week for a reason. We had a really bad scare. When Josh had his end of treatment MRI the results were mixed. No reoccurance of brain tumor or spinal tumors. That was very good. However, they found a bone in his lower spine that looked bad. He has been having some pain in that area in the last several weeks. We were told that it could be infection or tumor but the truth was that it looked like bone cancer. We spent a pretty panicky weekend. They told us that they were going to do a biopsy this week. On Monday a panel of doctors including 2 oncologists, 1 pediatric neuro-onclogist, 1 bone cancer oncologist, a pedatric orthopedic surgeon, and neuro-surgeon (he just thought it was interesting) met and duked it out. The opinions were varied but it was finally decided to do a pet-scan first to try and pin point any cancer. If cancer was there the biopsy and possible surgery would follow. We did the pet scan today and Thank God! no cancer. They now feel the bone may contain a hemanginomia (I hope I spelled that correctly). 2 of the doctors (guess which ones) still want to do the biopsy but the rest think we can do MRI's monthly and see if it remains stable. Surgery to remove it is risky because it is basicly a tangle of blood vessels and bleeding is possible. However if it grows that may become nessesary. Today we just don't care - I just keep saying "it is not cancer, it is not cancer". That is enough.

Now, on to my apology. Normally we would have shared this right away but we have a trip to see family coming up and we wanted this trip to be care free for Josh and everyone else. If it was a reoccurance or new cancer we did not want people treating him different. He misses seeing everyone and this trip is very important to him. Everything was so unsure we just figured that we should wait till we had more information. Also, so many people have expressed that they feel he will be fine now that treatment is over. We want it to be fine now. We want you to enjoy time with Josh now. Gordon and I will always have this cloud of worry to deal with but we want Joshua to live normally. That means we ride the roller coaster and we bear the fear. Not him, and while we need your support, we do not want you to live that way either. It becomes a balancing act for us. We are so grateful that this time it had a happy ending. We are so grateful to know that if it did not you would have been there immediately. Mostly we are grateful that for the next 30 days we can relax a little and try and find our new normal. The doctor wants us to start Josh on training to build up his bones and muscles that have been so weakened by the chemo so we will add that to his schedule. But at least we can rest a little too. Thank you for all you do, calls, prayers, and the many who sacrificed time and money to be here when we needed you most in the last year. I do not mind the roller coaster, as long as we are on it - that means one more day together and that is enough. We love you all so much.