We really appreciate every ones concern and willingness to help, but we have been receiving a very overwhelming amount of messages on Facebook from people recommending miracle cancer cures..... We are aware of St. Judes, as well as other clinics/hospitals that offer care and treatment for patients with cancer. We are also aware of cannabis oil, and HAD actually been using it routinely to help him sleep. I need people to please understand our situation...2 months ago MAYBE there could have been something that we could have done to prolong his life. Maybe there might have been something that could have bought us an extra month with him....but what many people dont consider is that as parents, we have to make a choice between quality vs quantity....even if we try something that MIGHT get him an extra month...is it going to be quality time....the answer: NO I say no because even now, Ronnie has no quality of life. He is completely paralyzed. He is completely incontinent, which means he has to wear diapers. He is losing weight rapidly, even though his face continues to look swollen from the steroids. His skin is paper thin, and we can see every vein that runs through his entire body. His legs and arms have NO muscle left in them and he is covered in stretch marks from his neck to his toes. His oxygen level sits at about 89, and that is with him on max oxygen from his machine. He cannot chew, so we have been lucky in the last few days to get so much as 3 tbs of applesauce down him. He is constantly gurgling on saliva and phlegm that he cannot cough up because he has no cough reflex...and even he does attemt to say something it is a really just a low gurgly moan. He sleeps almost all day now. If he is not on morphine he is in pain, if we try to put our hands behind his back to situate him, he is in pain. He goes long periods of time without taking a breath. He cannot even turn his head, so even if we did want to try to have him treated in a desperate attempt to keep him around for a few weeks longer....it is unlikely that ANY Dr. Would treat him. He is in the very LAST STAGES of cancer with a VERY AGGRESSIVE tumor in his brain stem. The trip alone would kill him. No child survives this cancer...right now we are trying to make Ronnie as comfortable as possible.. Ronnie might have another two weeks with us, or he may have another two hours. At any moment the pressure in his brainstem can become too much and he can stop breathing. Because it is in his brain stem there are a wide variety of ways that it can go. No child passes of DIPG exactly the same. I hope nobody takes offense to this, it is just very hard having to answer back to dozens of messages each day as to why we will not consider treatment at this time. It is not that we have given up hope, wet have just chosen to accept reality....and we do appreciate everyones concern, it is just hard to see those types of messages every day. I try really hard to answer every one back in a reasonable amount of time And we sincerely enjoy the messages we get from everyone...just not the parts about treatments we need to try :)
Posted on: Thu, 16 Jan 2014 04:35:40 +0000
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