Something on the night before chemo is amiss at our house. JR and I can always tell when chemo is the next day, because for some reason no sleep is to be found. Sweet Gracie couldn't sleep much because she had such bad aches. Ever since chemo first started, her Vincristine makes her muscles and joints aches. But, we found it strange that she hadn't had chemo in a month and it still affects her. It makes me wonder if it's something she'll suffer with the rest of her life, or if (hopefully) it will pass in a year and a half when treatments are finally over. Eva woke up with the roosters at the crack of dawn, and today managed to jump out of her crib. The thud on the floor was rattling!
Chemo went pretty well today. Her blood counts are higher than the doctors would like, because during maintenance they want them to consistently be between 750 and 1500. But, they think the month's worth of chemo will take care of that. She has been fighting a stomach bug, so that's most likely the reason for the higher count of 2500. Her numbers spike a bit when she's not feeling 100%. Otherwise chemo went very fluently. Grace set a new record today!!! Accessing her port (needle into her chest port) is really tough for her, but she did it in 8 minutes flat! WOW! We have a system for accessing her port and so that she can be in control-the nurse doesn't come near with the needle until Grace counts to 3. When she got to two she was having trouble and I said "all I know is any girl who can ride SPlash Mountain (thank you Disneyland!) at the age of 5 can do anything!" She shouted out 3!!! She constantly amazes me with her fortitude and bravery! Her nurse was cheering. So awesome! She starts her monthly round of steroids tonight. Things are going pretty well for little Grace. By the way, highlight of the Disneyland trip (thank you so much Grandma and Grandpa!) besides all the wonderful things, was to hear Grace state, "I don't even feel like I have Leukemia." Music to our ears!
Tuesday, May 19, 2009
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13 comments:
I can pick up Tanner from school on Wed. if that will help? I think Grace is at home. Let me know.
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How can someone so young be so strong? Grace amazes me more and more! I am so glad the Disney trip was so wonderful for Grace and the whole family! Love the pictures!
I love that last sentance. I bet that was one of the most powerfull things you could have heard from her. When she called today and was so exhuberant about accessing her port so quickly, I didnt know whether to hurray or cry..dont worry, I hurray'ed... it just melted me. She is one amazing little person who is an example to everyone!
What a magical trip for Grace and your family. I'm so glad she felt she had a "break" for a few hours. I think it must be getting time for a visit?
Way to go Grace. You are so brave. We are glad your family had such a nice time in Disneyland. How nice to get away from it all.. sounds like a great trip.
I really think her bravery is inspiring. I can't believe such a little person can even BE so brave! I know I wouldn't be. I'm glad things went alright, and mostly I love the great pictures of disneyland!!! What fun.
Grace, you are WAY braver than me!! I hate needles and I've been on Splash Mountain and I still wouldn't have counted to 3!!
Take care sweetie!!
❤ anjanette & kennedy
Splash Mountain at 5?! Brave indeed. so thrilled that you were able to feel the "magic" of Disneyland. hopefully it brings a little more light to her fire that continues to inspire so many. We love you, Gracie.
That's awesome that your family could get away on vacation and from the stress of everyday life. It really is a magical place, isn't it. Kalista didn't even ride Splash Mountain, so Grace really is a brave girl! I hope that she handles this treatment with flying colors. All the best.
Oh, sweet Grace. we love you and loved seeing you. we loved seeing you all! I am so glad Disneyland was great. It really is a magical place and no family is more deserving of some happy, happy magic!
I am so happy you guys got to go on such a fun, needed get away to the happiest place on earth!!! Your pictures are darling and it looks like you had a blast! I am so happy to know things are going the best they could! We love you!
You have one special little girl--I love her comment about Disneyland!! It is the most magical place on the planet isnt it? When I read about Gracie and her strong spirit, she inspires me to try to lead a better life. We all have trials in our lives, but why is it that some people just seem to be able to handle anything that comes their way? Grace is a remarkable child, and I feel so blessed to be in her family. Please know that we love and miss your family so much. . . .
how's she doing?
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