Lillian finished round three of chemo a week ago without any huge problems this time round! A wonderful miracle of its own! Her bloods ability to fight infection is almost at zero but low enough to need a platelet & red blood cell transfusion yesterday which is normal & expected. And all this with only one low-grade fever so far! We are so happy about that! The art room is Lillians newly discovered favorite place. Wednesday was Her first trip there since we arrived in May and now we cant keep her away. Another reason to be thankful - she wants to get out of bed and leave the room. OT & PT have been getting her on her feet to walk with the use of leg splints and a walker. They are needed b/c her ankles are very weak. It takes some cajoling b/c she is afraid of the pain but we had good success in using the art room as a bribe today. We still cant get her to eat which is a sticky point between docs and us. They want to try another feeding tube, we want to be allowed to let her own appetite kick in. She has been getting IV nutrition since June which also suppresses her appetite. The docs are not keen on taking her off of it unless she has a feeding tube. Please pray for us to make the right decision about this. I hate putting her through another procedure if my heart says its unnecessary. Lilli always seems to struggle back up to stable but she needs to come off the IV nutrition and we cant get the docs to agree to that without a viable medical back up. Weve been arguing this point for a month now. Finally, her lungs continue to improve. She is still having an issue with mucous but we think weve pinpointed it as a post-nasal drip/allergy thing. If that is the case then the nasal spray we started her on last night should ease her suffering from that. Its been a concern b/c the drip causes coughing and a gag reflex which in turn causes vomiting or heaving and shes pulled a muscle from doing that. Plus its just a miserable thing to always be vomiting. Great news! The docs feel confident that Lilli is doing well enough to be discharged for about a one week respite from the hospital before beginning round 4 of chemo. Goal date is next Wednesday or Thursday provided she continues to improve or at worst be stable at status quo. Lillis quality of life is rising a little more every day and we thank you for your continued prayers & positive thoughts over each of these areas mentioned. We continue to be confident that Lilli will survive and thrive after this vicious bump in her lifes path and we gain our strength and continued ability to rely on hope from the love we feel through your prayers & thoughts.
Posted on: Sat, 16 Aug 2014 18:50:21 +0000
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