Still Somehow Fighting
Oh, some of you know this spunky little one quite well and you won’t be surprised…..she’s still hanging on. I don’t know how. Shayne and I have crumbled countless time; yet, Christi – the brave and courageous Warrior Princess continues to make our hearts melt with her presence.After days of very low heartbeats, yesterday early afternoon, her rate increased to an above normal rate. Her little heart is beating so fast I do not know how she has not yet had a heart attack! Even though they quit taking vital signs days ago, I asked last night to have her temperature taken as she seemed very warm to us. Sure enough, she had (and still has) a 105 degree fever. Because of the “situation” they won’t start antibiotics and she’s not alert enough to take Tylenol. Truly, it doesn’t seem to be bothering her so I refused cold wash cloths as I hate to make her uncomfortable after all the torture she’s been through.
Shayne and I caught winks of sleep here and there throughout the night. We had our ears solely focused on Christi’s shallow breathing promising to wake the other up if something changed. Her lips are so white, her skin is turning “dusky” and her finger nails are becoming darker. We’ve learned these are all “natural” (HA! NOTHING NATURAL ABOUT A LITTLE GIRL DYING!) signs of progression. Sometime during the night she closed her mouth and that raspy “death rattle” sound is now gone as she’s breathing through her nose.
We appreciate having our privacy at this time and hope we haven’t offended anyone by no longer permitting any visitors or taking any phone calls. Yesterday, CHOP Security stopped permitting visitors at our request. We’re just trying to soak in and savor every last second we have left here on earth with our Christi.
To our Rally Across America friends, Tom & Austin, thank you for the smile this morning. Tom’s mom, who works here in Philly, must have somehow passed through security’s block because we found a big pink whale hanging outside our door this morning and we loved it. Thank you.
posted by The Binary Biker @ 11:30 AM
13 Comments:
I am not surprised that she is still hanging on! She is one tough, brave little girl! I am sure that she longs for more time on earth with her mom and dad just as the two of you long for more earthly time with her! Continued prayers, love and virtual hugs headed your way!
Love -
Kim
I'm praying as you soak in every precious momement you have left with Christi here on earth.
You're 100% right of course (as usual) NOT a thing Natural about a little girl dying.
My heart is with you and I'm thinking of you all constantly throughout the day.
I thought you might appreciate this story, from a friend of mine (she has a daughter that is 5). And yesterday she checked Christi's blog, and said then that last night her daughter had a bad dream and came into her room. She said she snuggled her closer and hugged her tighter than normal because of Christi's story. She's touched so, so many lives. Mine included.
Loving you all dearly, praying and hurting with and for you,
Heather
I think like so many others, I don't really know what to say other than I follow each update with a prayer. I too, pray that she can peacefully pass with no rushes to ICU or moments of horror for either of you. I can't imagine what you are going through and I pray in the long run, the memories that linger will be the best of her life and all she has stood for, all of those she has touched (like me) and remember the strongest spirit that I think has ever touched this earth. A lot of people wonder what their purpose in life is and I think Christi has surpassed her purpose. She has done so much for raising awareness and touching lives. She has fought so hard, taught doctors and nurses so much about the many drugs she has tried and the trials she has been on. She had made changes that will help the others diagnosed with NB and she will never ever be forgotten. I check on Christi first thing when I wake up, throughout the day and right before I sign off at night. I pray for each of you, for Shayla and just for all of your family and those surrounding you that have been touched by and cared for Christi. Love, Tracy and Katia
I'm not sure that I have felt this much sadness since the death of my own child. I am crying rivers of tears for you, I am praying so hard for you and I am just so very heartbroken for you. The pictures of beautiful Christi and you, her loving parents, just bring me to my knees. Thank you for sharing this sacred, heartwrenching time. The praying from Atlanta will continue, though I sometimes struggle just what to pray for...mostly just sobs to God. May He bless and keep each of you, may He hold you in the palm of His hand.
You do not know me. I found your site from another Caringbridge family.
Count me among the many who are holding each of you in prayer today.
Janet
You do not know me. I found your site from another Caringbridge family.
Count me among the many who are holding each of you in prayer today.
Janet
Good luck to you all and spending the last few hours/days/weeks with your wonderful lil princess that's precious body is trying to fight that evil cancer that is taking her from her family and friends.
Good luck to you all...
I'm still praying constantly praying!!
Much luv-Krystal
Now I lay me down to sleep,
I pray the Lord my soul to keep
If I should die before I wake,
I pray the lord my soul to take.
We'll miss you dear sweet Christi! You have touched us all more than you will ever know and will forever be in our hearts. Watch over your dear sister and parents as they struggle with your passing into heaven. No more pain, no more cancer...fly free dear sweet girl, fly free.
-Melissa B
As I sit here continuously staring at your beautiful daughter my heart is continuously breaking for your loss and for your family ... May God Bless you all and hold you tight during this heartbreaking journey - like so many others I have never "met" your family but I travel this road in my heart with you all ... This disease is gutwrenching and disgusting but through it all you have found the beauty in your daughter's life here! What a gift she is and I am sure Angela, that your father is anxiously awaiting her arrival in her beautiful Princess Gown ... with arms stretched open wider than ever - long awaiting his first meeting with his prescious grand-daughter ... WOW what a glorious thought that is ... May God bring peace to Christi's amazing soul ... Rest for your journey to God Christi - your family will miss you forever ... as will SO SO many who have never met you ... Love in my heart for you all!
Rebekah Clark
Prior Lake, MN
Hang in there.
You make sure you love her up and down.
You all are in my thoughts and prayers.
She is one Strong and powerful little girl and God will take care of her until you see her again.
God Bless you Both.
Try to be strong for your other little girl because she will need you alot.
Michele
I keep hearing the chorus to one of my favorite "church songs" run through my head: "Be not afraid, for I am with you always. Come follow me and I will give you rest." Be not afraid Sweet Christi - He will give you peace and rest. May he also give peace to your mom and dad and your equally sweet sister. May the whole family be wrapped in His peace and light and may you feel the love and support being sent your way.
We've never met but I've been reading your blog - cheering along with you when you got good news and crying along with you when you got bad news. And I just wanted to send my good thoughts and love to your whole family.
To Christi-
Sweetie, you are amazing! I don't have the words to describe what a beautiful girl and human being you are. I am praying for you! I only found your website today. All of this suffering is senseless, yet from my experience today reading your website, I realized one important thing... that until everyone of us on this God created Earth, get it...suffering like this won't end!I am making a pledge to you and your family that I am going to get it. I want to learn to enjoy my life and cherish all of the people in it and stop complaining about the small things. Thank-you for sharing your story with me. You are a very powerful force on this Earth. And when you leave this Earth for Heaven I get the feeling that you will continue to shower your gifts onto your family and loved ones who have been there with you through this painful journey, in an abundance that they have not witnessed before. Rest peacefully sweet Angel and Thank-you!
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