New ThanksMas

Today we decided that because our holiday season was so crazy and we didn't have a traditional American holiday dinner together that we should do it while we were all home today. I cooked a turkey, stuffing, all the fixings then we all sat at the table with the fancy plates and said grace. It was nice to have a relaxing day together and just enjoy each other's company. The last few weeks has had many ups and downs, we are taking this all one day and one event at a time. The downs this week have been much easier to take on, Ryan has begun taking a low dose oral chemo (mercaptopurine) at home and so far only seems to be a little more tired than usual. The first few days giving him the medicine was incredibly difficult for me knowing what I was feeding him but I had to keep reminding myself that this is what he needs. We had our first office visit with his oncologist on Thursday and it went very well but there was an anxious feeling inside of me that was worrying that they would readmit him to the hospital. (it seems silly thinking about it now but nothing has been rational in my mind so far) His blood counts were all exactly where they wanted them to be. Things were all up from there. Ryan even got a new toy, a Mickey ring stack, which he has become very smitten with. At the office the nurses were all impressed with Ryan's activity levels, even Dr. H. was joking saying they will think he's crazy giving treatment to such a healthy baby. Since he has been doing so well our next appointment will not be until Friday the 17th, by then we will have the results of his cytogenetics and a treatment plan. For now it's looking like his treatment will take place at All Children's in St. Petersburg  which is about the same distance from the house as it is to Florida Hospital so we will be able to be close to family and a great support system. A lot of people have been asking about bone marrow donor information to see if they can help, I'm in the process of figuring that all out myself. They have been looking in the registry for a match already, hopefully they will tell us more about that at our next office visit. I have been using all of my free time looking at information / support groups / blogs for survivors and families of JMML patients, it's amazing how much you can learn so quickly! Keep up the prayers, the power of positive thinking is greatly underestimated.