Out and About

Today turned out to be exciting, relaxing and exhilarating!

This morning we learned that Xander's virus has completely scabbed over. There are no new signs of infection and the Doctors all collaborated (including Infectious Diseases and MSW) that Xander could move out today. The room was cleaned for BMT STAT and we moved around 2pm.... back to his old room across the hall. I gathered all of our items and Molly showed up just in time to help me move everything. It was a nice afternoon and Xander enjoyed the new(ish) surroundings VERY much. This was very good for him mentally, he had a great attitude and only made his sister cry once during this time (by putting her up to something naughty that she actually did!). I enjoyed the re-decorating as a way to fill the time and just LOVE the water color paintings from a lovely lady at RSSAA. I want to put them all on the wall so that he can see them from his bed, but then the room looks really lopsided.

In regards to medications, Xander has now been moved over to PO (oral) on 2 meds that he has been receiving via IV. This is very great for Xander, as this means less time hooked up to that 200 pound pole (when he was telling Molly about the pole, he informed her that it weighed 200lbs! haha). Our day time nurse the past 2 days, Sara, also commented that this was very good for Xander because in order to come home he has to be on oral medications for a good period of time to make sure the levels are holding properly in his system.

Physically, Xander is doing really well. He still has good muscle mass and is challenging himself physically on a daily basis. He loves the bike and he loves his new quinoa punching bag (thanks, Bill).

Tonight was definitely great for him and me alike! Xander was unhooked from the pole around 7pm. We went for a walk (he has to keep his skin covered and keep his mask on), and even went outside in the freezing cold weather! He ran up the block and touched the tulips at the entryway. He ran down the hallways and pressed all the buttons in the elevators! It was what he needed very much (me too!)

Xander ate his favorite dish from Hut-K Chaats tonight and enjoyed every bite. He has to eat 50g of protein and about 1600 calories a day to keep his weight... which, has stayed the same since he arrived. Sandy on the BMT team gave him a great pep talk today; he respects her very much.

This journey is truly amazing.... as soon as we have more test results back, we'll update you on the bone marrow transplant.

Peace and Love to you All - you keep us going strong.