Still here! They did a culture of his knee goo and whatever they grew is too unusual for this lab to know what it is so they are sending it to SLC. So we should know in a couple of days what dastardly organism has caused so much trouble. His ANC is still zero, and when i say zero I mean it...his neutrophils don't even show up on the CBC. They put him on zosyn when we got here and that wasn't doing anything so they switched to ceftazidime. They started out putting neosporin on his knee ?? duh that's not going to help I was thinking and when I told his home health nurse she said 'when they do stuff like that tell them-that's not going to do anything and ask for something else' I'm learning to be more outspoken about stuff, but it's wierd cause you start out something like this assuming that the medical profession is always on top of things and I am learning quickly that they aren't. Hopefully some time today his knee will show improvement. If it does they might let us go home tomorrow even if his neutrophils (germ fighting white blood cells) haven't risen and we'll just continue his meds at home with his home health nurse. Emily(5) will be so excited cause she's been writing notes to the nurse's daughter who has curly hair like her and her daughter wrote her a note back. The home health nurse came up yesterday and delivered a bag of goodies from another cancer patient she sees. That was a really nice surprise and nice to be in touch with another cancer mom from the area. Her boy is 4 and has ewings sarcoma.
Ty had a good day yesterday, he was happy and playing and his Grandma Kitty Kat brought him some toys and played with him for a while. His brother Ryan(8) came up and spent a while with us too, he has a really hard time when mama isn't home. Merin(18mos) came to see us a couple of times and we briefly saw Brooke(10) and Brenna(13) when they came to pick up Ryan. Grandpa came up last night and played with Ty while I went home for a few. I got to put in Ty's laundry and play Apples to Apples jr with the kids and duck duck goose. We had a great time, when Merin figured out what we were doing she would go around the circle saying 'guck guck guck' until someone talked her into saying goose and then chase her around the circle, it was really cute. You would be amazed at how fun duck duck goose can be, it's not just for preschoolers! :)
I guess while I was gone he was bouncing off the walls, jumping on the bed when the nurse was trying to do his vitals and stuff. I'm not sure if being familiar with the nurses is necessarily a good thing now cause this morning he hid from her under his blanket and kept turning and laughing when she tried to put the stethescope on him.
I am part of a private facebook group called Utah moms with Cancer Fighting Cuties which has been a great outlet and coping mechanism. They put together a video a while ago to support CureSearch who raises funds for the Children's Oncology Group. You can watch it below. They have the CureSearch walk this Saturday in Salt Lake to help raise funds for it. I'm hoping it works out that we can go walk with them next year when Ty is on maintenance. I am ever indebted to the Children's Oncology Group for their extensive research. In the past 40 years they have been the leaders in raising the childhood survival rate from 10% to 78%. That is awesome progress!! Their goal is 100% Ty is taking part in one of their clinical trials right now (mostly data collecting) and we are soooo glad so much progress has been made in the cure rate of acute lymphoblastic leukemia. (ALL) The video includes many kiddos from that group and gives you a behind the scenes view of childhood cancer.