Thursday, January 29, 2009

Lou-ass update

Hey guys-
This is my first blog post ever so bear with me as I am not one with words! First of all I wanted to thank each one of you for the tremendous amount of support and all the prayers. Everyone has been amazing. I know we have said it a few times but visitors are more than WELCOME we just want everyone to be aware of Luke's increased risk of infection so no one sick should come, and also that his energy and pain levels change from one minute to the next so he may say he is ready for a visitor and then ask to have no one in the room when you show up. So please be patient and know that he does want to see you but the way he feels is constantly changing. Also- Beth had mentioned it earlier but I wanted to ask that no one call Luke on his phone (at least while he is in the hospital), the best way to chat with him would be to call Beth or me to find out if he is up for talking and then he can call you back or we can give him a message. We only say this because Luke has felt obligated to answer his phone when he is awake, even when he feels awful and he wont turn it off so it wakes him up. Please send him e-mails or chat with him online if he is on- or come by and say hi but right now please no calls to his phone.

The last few days have been crazy and I think we are all still in a state of shock....hoping to wake up from some sort of nightmare (although after receieving the diagnosis I am happy to say we are no longer sitting in a small hospital room in Miami where all we got was untreated pain and a bit of sarcasm from Luke). MD Anderson has been outstanding, the doctors met with us for over 3 hours yesterday and again today for over an hour, we have never felt rushed in our meetings or made to feel like a we are just a number. Today the doctor went over the "plan of care" as we say in the medical profession. The next month is going to be very intense but it is important for all of us to remember that this is a 3 year treatment process and Luke needs all the encouragement that we can all offer today and 2 years from now.

It was a day jam packed with procedures but Luke tolerated all of them well. He had a bone marrow biopsy in both hips, a lumbar puncture (spinal tap) and a PICC line placed. He also had an echo done to establish a baseline heart function and multiple Xrays. The first dose of chemo was given into his spine and was done during the tap but tomorrow he will start all the IV chemo. Just an FYI (as i was confused too) the chemo was given through his spine b/c studies have shown that at some point leukemia patients develop leukemic cells in their spinal column and/or brain so they do chemo on all patients prophylactically in their spine b/c it is not a matter of if it will happen but when.

When i left the hospital tonight Luke had a temperature and was in excruciating pain from his LP and intrathecal (into the spine) chemo. They are treating his pain well and apparently his pain should decrease as the leukemic cells get their asses kicked when steroids and the IV chemo are started.

We will continue to update (now that i know how) and keep everyone in the loop. Again- we want to really encourage visitors but want everyone to know this is a long battle and he will need more support than just this week. Feel free to call or e-mail Beth, Kate or me if you want to see or talk to Luke. We would love for you to contact us and don't hesitate to do so as we see it as a way the 3 of us can help Luke out and make sure his spirits stay high!

Love you all and thanks for all the prayers and support!
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