Yesterday Jace had an appointment at Childrens for labs, dressing and cap change. Jace reminds Heidi to clean, clean, clean his caps. One line is red and one purple and he sits and repeats the colors. The stitches were out in a couple places on his central line, so a statlock was added this time for more security. Hes up from 20.4 to 20.8 lbs. Nothing huge, but at least its not a loss. We cannot figure out where he is putting all the food he constantly eats and continues to take his appetite stimulant. His face is looking a little fuller, but its not showing anywhere else yet. Hes been in a great mood and more mobile this week. He has been vomiting again here and there, so back on the zofran. Two years old and he gives us the come here hand signal and repeats puke, puke, puke allowing us to avoid a mess. I love this guy! Again, before we walk away he is trying to finish what he is eating. So weird he can go back to the same food. His labs checked out great, so we are on schedule for round 3 of immunotherapy on Monday. Lots of busyness this week with appointments, school starting, Jamis last day and getting Julie onboard to watch Jace now. We are so happy Jace bonded with Jami with his crazy schedule of being here one week and not the next. Jace started his 2nd set of shots for 14 days tonight. He sat down while I cleaned his lines and Jeremy came over with his gloves on. Jaces little lip started quivering and a little sad cry. That part NEVER seems to get easier and hurts the heart a little. Jeremy asked him to lay back and he did it and then cried. Hes sooo good. No fighting or holding him down. Just another reminder how different Jaces life is at 2 yrs old. Praying Jace can blow through next weeks treatment without it knocking him back too far. Every time he starts to feel better he has to do another treatment starting us all over. Thank you too all who continue to keep Jace in your prayers. Sometimes when feeling overwhelmed or just plain tired of cancer being a part of our daily life, the rally of support fuels us back up. Next month is the anniversary or should I say cancerversary of diagnosis. Unbelievable almost a year has passed. August 2013 was so challenging for us with Jace continuing to be more and more fussy and running random temps. Half distracted with our daily lives we dealt with it. I cant help but remember how easy and worry free life seemed. We had no idea how fast that would change. Such a flood of emotions, especially having Jace here with us and watching him fight through treatment as scheduled. There are many neuroblastoma friends we follow who have big decisions to make when treatment fails. We are going to enjoy the next two days off, at home, with the whole family. Have a great weekend!
Posted on: Sat, 16 Aug 2014 03:46:06 +0000
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