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Decisions, decisions...

FIVE WEEKS folks and the tumor in Kennedy's lung has been stable.  This is pretty well unheard of for a child in her circumstances five weeks ago, sent home from MD Anderson with a tumor tripling in size weekly and all treatment options exhausted....NOW that there appears to be some stability, there appears to be a few options on the table...Pam has been in contact with Dr. Anderson's assistant in Houston and when they heard the news they immediately wanted to prescribe two drugs that could help maintain the tumor or even shrink it further, which then may allow for other treatment options.  Dr. Gracias here in Chattanooga, also has a clinical trial drug (including one of the drugs recommended by Dr. Anderson--Rapamume) that also could do the same; continue to maintain and potentially shrink the tumor in her lung.  However, this is not an easy decision to make, every choice has a trade off of some kind.  These drugs no doubt have side effects, side effects that when she was healthier would not be that big of a deal, but now as weak as she is such side effects could really set her back and compromise her quality of life.  Also, there is the question of whether or not there is cancer in her bones.  Dr. Gracias was frank today and told Pam that he is fairly certain the pain that Kennedy has been experiencing in her shoulder and now her ribs is bone cancer, of course no way of knowing but to do a bone scan, and Kennedy does not want to know--understandable, no one wants to do anything that will dampen her spirits and bring her down, she is doing quite well considering, but no doubt her attitude is very tenuous and it would be so easy to spiral into depression if handed more bad news...So what is to be done???  As Dr. Gracias described it today, the tumor in her lung is a time bomb, it is alive, but it's like the fuse has gotten all the way down to the end, but not yet ignited.  These oral chemo drugs may help stop it more, or they may compromise the other functions of her system to the point where the cancer gains foothold again and the growth begins again.  Shrinking/stabilizing the tumor over a longer period of time (its unclear how long that would be, obviously longer than 5 weeks) would allow the eventual assessment of the rest of Kennedy's body and if bone cancer is found, with the lung stabilized treating those areas may be an option...but will these drugs be effective, and if not effective will they be harmful to her quality of life in any way????  There are so many factors to consider, but ultimately this is going to be Kennedy's choice how to proceed.  I've gotten pretty detailed about all the possibilities, but this doesn't even begin to explain the complexity of the choices...but thank goodness to be in this position, to have a choice to make, to have a little more HOPE for the possibility of more time.  No one can explain how the tumor went from growing like wildfire to stopping for five weeks now, but we are all convinced the power of prayer is working on Kennedy's body!  The pain in her shoulder and ribs has increased again, hospice has adjusted her meds again and still able to manage it all with oral meds. 

Please pray for clarity of thought for everyone involved in these decisions, Kennedy, Pam, Mark, all the doctors, that their advice and guidance is centered on Kennedy and quality of life, nothing is worth making her suffer any more, even in the slightest at this point, and the slightest issue may become detrimental at this point...trade offs all the way around, but by the grace of God and the power of prayer, the path will be clear.  I will keep you posted as to what is decided and if Kennedy will in fact start the oral chemo meds. 

Thank you all for your continued prayers and support!!!

Amy

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