Courage for Kennedy – Journal


December 26, 2005

Category: Gratitude,Treatment – Melenie – 12:53 am

Thank heaven for Austin…if it hadn’t been for him, it would have been very hard to believe it was Christmas. Keith and I slept for a few hours in the trailer-I got up around 5:30am to come back up and be with Kennedy. It was wonderful to sleep with my husband without any kids-I can’t remember when the last time was. Kennedy seemed to do well through the night. Her counts are all coming back good and today she only needed one unit of platelets. Her liver enzymes and ammonia levels are continuing to decline and everything indicates that her liver is wanting to function. It still has a lot of healing to do but it is certainly moving in the right direction. They are still saying she is in critical condition, but she appears to be getting better everyday. The drs and respiratory therapists (now only referred to as RTs) are still monitoring her breathing very closely and have increased her oxygen. They are concerned that her lungs are getting “tired of working so hard” and they are looking at possible options to help her including inserting a chest tube to keep the fluid/pressure off. At this point, it can’t be anymore of a risk than poking her several times to drain it off. After 5 pokes tonight, they were only able to take off about 600cc or about 1/2 a liter. In the grand scheme of things, not much. Her ANC/WBC is still in the hole so they are adding one more drug (GCSF) to increase her counts. They would like to see her ANC over 1000. They usually don’t give GCSF to Leukemia patients (after all, it is in the WBC that they have problems) but the benefits outweigh the risks in this case. They are giving it through her IV rather than as injections so it is important she stay in the ICU to have her blood pressure monitored. We have also learned how long she will be taking the experimental drug-about 2 weeks. They did increase her dose today also.

So, her VOD is improving as is her DIC. They are actually more concerned at this point about how they will go about treating her Leukemia. Because Kennedy is both a high-risk and slow-responding case, it is vital they continue some kind of intensive for the next 4 months before she moves on to maintenance. The problem, is that there are drugs she will not be able to take after having VOD. Relapse may be one of our biggest fears, because should she relapse during her intensive, she may need a bone marrow or stem cell transplant. And she has already had VOD so the likelihood that she would get it again is good but they do not believe another round of it would have a positive outcome. She will still get her dose of Vincristine on Tuesday but after that everything is up in the air. Just something new to worry about!

Austin had a good Christmas and Santa even left him an additional 7 presents up here. Boy, he was sure excited to get up here and see what his treasure was. My mom said that he left a note for Santa reminding him that Kennedy was in the PICU and not to forget her. He definitely didn’t and even left goodies for mom and dad. That was very nice and much appreciated. He had a very difficult time leaving tonight and was very upset that he couldn’t spend more time with me. I promised him that we would work out a way for him to stay tomorrow night with us in the trailer and that very soon he would get to stay every night. That did little to comfort him at the time. It is just very different than being in our usual room (it always seems that we get 3530!) because he can’t be loud or really play. If there was an emergency with Kennedy, the nurses and doctors would not appreciate stepping on Legos! It is definitely more boring for him and everyone is so tired and stressed out that they are not in the mood for entertaining. I told him that things would improve soon but that is so hard to see right now. Tomorrow, Keith is taking him to the movies so that will be a nice change of pace for both of them.

Ok, I know it’s short. I want to thank everyone for your encouraging messages-they really help and of course for the great food! It is my night to sleep all night (and daddy’s night to get 3 hours and then be with Kennedy) so I am headed to the trailer for SLEEP.

Love you all so much,

Mel

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