BMT update #12 Day +16 At this point, doctors are ruling out infection (yaaaay!!!) and they think his symptoms are resting with engraftment syndrome. This is a relief but we still have a bit of a road ahead of us. Lucas is now on steroids to help with fever and inflammation caused by engraftment. This is proving to be a real treat for his attitude. There are many highs and lows throughout the day and many many spitfire moments. Hey... Ill take it. Sassy means theres fight in there... and thats whats going to help him WIN. Liver #s are still high but did not go up. Our doc is hoping they will trend down in the next day or so. Diarrhea is still in effect but there was a great improvement today (betchyall wanted to hear that, huh?). AND... I got him to go on the potty... which is much easier to clean up in terms of C-diff. All it took was a teensy bribe - new game on his iPad.... again... thank you on so many levels for the ipad!!! Spleen is holding a little more fluid than theyd like to see and so are lungs but they did not seem concerned at this time. These are good things as 2 days ago his heart was racing so fast I feared a baby heart attack. Tomorrow: Another Phase Lucas will need to be sedated again tomorrow as he is getting prepped for a new phase in treatment: Radiation. The radiation doctor was very kind and gave us a lot of information. In order to get Lucass radiation therapy to be as precise as possible, they will need to sedate him and create a mold for him to rest in during each radiation cycle. He was very clear... He does NOT want to radiate things that do not need to be radiated and that is why it is essential to get this mold correct and to have him sedated to do so. Once it is done they will fine-tune his radiation site plans and sedate him for each treatment... again, being still is essential during this process. Please say a prayer as each stage comes with its own share of scary stuff and... really... through all that weve been through, sedation is my very least favorite. Just pray he comes out of it alright. More Precise Prayers - If you are finding that youre unsure how to pray for this little guy and for our family, here are some requests we could use focus on... 1. Engraftment continues to be successful with minimal side-effects - and the side-effects that are current would come to an end. 2. That sedation will go well on Friday. 3. For caner to stay in 2014... locked up in the past. 4. That Hannah and Charlie feel empathy for their brother - but stay sheltered from the scary stuff. 5. That we all have patience and kindness to deal with the really fun side effects of steroids in a 4 yr old. 6. And a prayer of thanks to the Doctors, Radiologists, Child Life Staff, Environmental Staff, and especially... ESPECIALLY our Nurses who care for Lucas with love and compassion each and every time they enter the room. All my love & thanks to you... Red
Posted on: Fri, 02 Jan 2015 03:40:48 +0000
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