Monday was Caseys clinic day at CHLA and a day to meet the new attending oncologist. During the our appointment we had a list of things that we wanted to be followed up on, the main one being Caseys heart condition. We want to eventually get him on a different blood thinner to prevent clots from forming in his heart. He gets an injection of fondapainux every morning and we would like to find an alternative, preferably something in pill form so that he wouldnt have to be poked every day. All that being said, the first thing to do was to have an echo of his heart so the cardiologist and hematologist can make an assessment. Well, the good news is that there are no clots in his heart but the bad news is that the initial results showed that his heart function is now at 19% down from 27% the last time he had an echo. This news is very hard to except but we have had a day to digest and email the cardiologist to get the ball rolling on what can be done to try to correct this condition. As of late Casey has had a cough for about the last 8 weeks that doesnt seem to be going away and has been very lethargic and tired. These two symptoms are indicative of reduced heart function and as much as I hate to say it, heart failure. Casey heart condition has been labeled as congestive heart failure ever since it was discovered the bad cells infiltrated his heart muscle and caused the initial clots to form. When that happened it damaged the muscle in the apex of his heart to the point to where is does not contract anymore and his ejection fraction (EF) is compromised and this is what is measured to determine his heart function. The cardiologist Dr. Pruetz has been following Casey ever since his diagnosis and knows his history well. Dr. Pruetz was off today but has our cell phone numbers and called Susan back within an hour after receiving Susans email to discussed the situation and asked about the symptoms Casey has been experiencing. He reassured us that we havent even scratched the surface of what can be done with medications and procedures to try to correct his condition and for us to try not to worry. We already had an appointment on Tuesday to meet with Dr. Pruetz but he said he will make sure that it is changed to Monday so that we can see him sooner... HEAVY SIGH.. If only it was only leukemia we were fighting things would seem easy but the surrounding complications are what is making this battle even harder. But as we have done from the beginning we will meet this new development head on and fight, fight, fight!!! Thank you for the continued prayers and support..WE NEGU!!!
Posted on: Fri, 03 Oct 2014 23:05:04 +0000
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