September 26th 2014. We have been looking forward to this day for so long. This is Sophias official end of treatment date, this is the day to celebrate! This day is supposed to indicate the end of admissions, port accesesses, chemo, hair loss. This day is supposed to be a new beginning with lots of smiles and laughs and a bright future ahead. We have had 2 years of tears and smiles, sadness and joy and fear and worry. 2 years of chemo, sedations, procedures, port accesses, daily medications-usually 2-3 times per day, hospital admissions, finger pokes and blood draws, testing, 3am steroid munchies and the horrible steroid mood swings, midnight fevers and packing for a 45 min drive to the hospital. Over 2 years of this and she just turned 4. I pray one day this will change, that children wont have to face these challenges so young, that instead they live like normal children should and do things like all other kids do without having to worry about low counts and not feeling well. That families wont have to go through what so many families have to, that parents wont have to hear those terrifying words your child has cancer Unfortunately we have had this new setback, this new diagnosis of HLH. Sophia is still doing great and responding well to the steroids and the drs are very happy to see her progress. She feels great and is playing and doing lots of fun activities. She is a completely different kid from last week. We are hopeful that steroids is all she will need and she will continue to improve and we will hopefully get to go home soon. Today marks her end of treatment date although Sophias chemo was stopped when she was admitted. So she has technically been done with treatment for almost 2 weeks. We were really looking forward to today and had lots of fun things planned to help celebrate. Sophia may be done with treatment but she will not be considered cancer - free for 5 more years, after that time it is unlikely for her to relaspe. We will always worry and the fear will never go away, if anything it worsens, especially now with all this new stuff going on. I know there will be more obstacles in the future but I know because of her diagnosis she is stronger, we are stronger. I know because of her treatment she will have the opportunity to live a life that she deserves. One day, hopefully soon, we will go home and celebrate her end of treatment as intended. And one day she will be done with admissions and port accesses and this hospital stuff Thank you everyone for continued thoughts and prayers over these past 2 years of treatment and now with all this extra stuff going on. You have all helped us so much and words cannot express how much it means to us.
Posted on: Fri, 26 Sep 2014 15:23:48 +0000
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