1 Week Down

Today was a VERY busy day. Brayden's having his 2nd unit of blood going in right now to complete his transfusion. We had visits from the school teachers liaison on staff to go over some steps to ensure he graduates from 3rd grade and we're not sure yet how 4th grade will work. As of now, it will be Jan 2010 before he can go back. Stats are all still good today. The social workers brought him his beads. Each patient gets "Beads of Courage" through a program here. He really loved that but it was hard on mom hearing them recap all he's been through so far to give him the beads he'se earned from everything over the past 7 days. They completed his ecko check-up on his heart today. He had a tent-like breathing treatment to prevent pneumonia when we go home. There are a lot more preventative meds going on. The home plan, calendars, meds schedules, preventative care, etc happened today and we'll definitely have to be more organized than we ever thought of being to keep up with it all. There's a lot to remember.

Honestly, Bryan and I are totally feeling so much pressure today. Not just from the diagnosis but working back into a rhythm of life. There's still a lot to do at home and honestly, I just want to watch Brayden like a hawk and not worry about anything else. There's a lot of maintenance things we have to help him with we've not really talked about yet. Plus getting the house ready and realizing we've got to figure out work and a schedule in all of this. We've learned with him being in isolation, visitors really aren't optimal. You can't be sick or have been around someone that's sick or has a fever. Bryan and I can't come in without first changing clothes and showering. We have to limit Brayden's outside time and he'll need to wear a mask when he does, just like here, and have to wash the clothes he was in. We have to really be cautious 48 hrs after chemo with handling everything. I can't imagine how tough this is really going to be. His cousin's birthday is in two weeks and it looks like we'll miss.

Thanks to our friends Trish & Ken for getting our mail! It's the basic little things that slip our minds while in here! Thanks to Grandma Sue & Aunt Sandy (the youngest & best-looking great grandmother of any patient here!) for visiting! Brayden loved the books and Star Wars Legos! Dad has already been digging into the basket of goodies and I can't wait to use the adorable stationery. Thanks to Mrs. Wendy for the incredible Star Wars pics with Brayden in them! Thanks for the book - you are a true talent and those pics of school and all his friends were a treat. He poured over it twice. Thank you, Mrs. Melanie for the cool posters! He was so pumped over the Romo poster! Momma's got a lot of work to do at home to find places for all of this.

Prayers needed: somehow I missed that he'll have a bone marrow aspirate tomorrow and another spinal. I think this shows I'm officially out of energy reserves and stressed more than I realize. Very few kids do, but some have been known to go into remission after only the 8th day. How awesome would that be? They'll also do the spinal, check the cells again, and do another chemo shot to work against the leukemia cells that were found in his brain. He'll have another iv round of chemo tomorrow to fight off the rest of his cells in his body that are bad and we're still praying with the transfusion given today that he'll be ready to fight without compromising the good cells and organs. We're praying today's ecko will bring good results tomorrow with his heart. Please pray for me and Bryan. I haven't yet asked for this because I didn't want to be selfish. It's going to be a long drive tomorrow in separate vehicles. There will be a very nervous momma looking in the rearview mirror at my sweet boy in the back seat hopefully not more than I'm looking in front of me. There's a lot to do with picking up rx, and making sure we don't miss a step with him. I'm going to have to keep myself in check and not get overwhelmed or stay up all night obsessing about doing so many things to be sure he's in the most protected environment. And then there's work. So please pray for both of us as we sort all this out for guidance and peace and strength. Thanks to you all and sending love to all of you from Little Rock...