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
53 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
we have lit a candle for christi we will be here with you in prayer
again thank you for taking the time out to keep us all posted What amazing people you are .
God is with you
Love and Prayers
Buffy McKenzie
You can't possibly offend anyone. It's impossible. We are all so grateful for the sharing that you are able to do. I know I check this blog every hour.. I can't help it. I need to know you are alright... You are both so strong. You don't know it or feel it, I know , but you are.
Hold Christi close and know you are being prayed for...
I'm so sorry...
Love,
Kim
You could NEVER offend any of us---you have shared so much of yourselves---the love and the pain--that we totally understand and support you 1,000%. And remember--it may be Christi's time but only God knows her hour...so until that time, do exactly what you are doing.
Love to you,
Vicki
Angela & Shayne,
I am so sorry for what you are both going through and for little Christi. Thank God you have each other to lean on. We will continue to pray.
God bless & lots of love,
Traci
What can one possibly say at a time like this. I think of you all constantly and hope that Christi will pass without pain.
Much love
God Bless you all.
I pray that God will continue to hold all of you tightly and surround you with His angels.
All our love,
The Bakers
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
I have to believe Christi is so special in God's eyes, that He does not see fit for Christi to stay in this world. I believe her wings are larger than anything we can imagine, and when she finally goes Home, the Heavens will surely be rejoycing.
I wish I could take your pain away. I am so sorry this had to happen to your little girl. My prayers are with you always.
Dear Thomas Team,
Sweet, dear little Christi, not in a hurry to leave. I'm still praying for peace for her, I pray that she goes peacefully to her paradise.
Take care,
lots of love
Angela
Christi is such a strong little girl, I believe she will go in her own time. I am still here praying for you all and a candle is burning all the time for her. I won't look away, just like I have kept up with Christi for a long time through the good times she was able to have I will not desert her in this the worst of times. The pictures from better times you have been sharing with us are so adorable, so full of life and sparkle, it makes it even harder to believe that it has come to this.
Still praying and believing in Christi
Leesa in MO
Praying for your whole family. I am so sorry for all you are going through,
Mark Mattox
My thoughts and prayers are still with you.
Michelle
The Lord bless you and keep you;
The Lord make his face shine upon you and be gracious to you;
The Lord turn his face toward you and give you peace. numbers 6:24-26
Megan in NC
Thinking of you and praying lots! I'm so sorry you all have to go through so much. *hugs* for you all!
Christie
http://www.caringbridge.org/visit/christie
My heart is breaking for you. Please know that I am praying for peace and comfort for Christi, as well as your whole family. What a courageous little fighter. My brother was in heaven long before his physical body gave out. We knew because the night before he passed he made the motions of combing his hair-and he hadn't had any in a very long time. Then I realized-he has hair in Heaven-and he must already be there! I rejoiced in God-knowing that he wouldn't allow him to suffer any longer-that he was no longer in the physical body feeling the pain. There are no words to express my sadness for you-only my tears. You've allowed your daughter to be loved and prayed for by so many people who would have never been touched by her spirit and personality by opening up yourselves to us. I have learned not only how to live each days to it's fullest from Christi-but how to leave this world with strength and courage. May God bless you now and always~
Rhonda
Although your sweet daughter doesnt look well, i must say that she is one of the most beautiful little angels i have ever seen. She still radiates through her pictures... pale lips and all. I believe in times like these, the spirit comes and goes.. the good times, your Christi is here working HER magic.. when she is sleeping, her soul is exploring heaven and just waiting to be ready to leave.
Sleep Peacefully Christi...
love and prayer
staci
nj
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
continuing to keep you in our thoughts and prayers
xoxo
jodie and karlie
Dear Shayne and Angela,
Christi still looks so pretty, even when she is so ill. Your bravery continues to astound me. I can't believe how much courage I see on these pages. I'm so sorry this happened to your family. It is truly a horrible, sad nightmare. I pray for relief for Christi and peace for your family. You are wonderful parents and Christi is an amazing little girl. Life is truly bittersweet.
With prayers,
Lynn
Angela & Shayne,
My heart is breaking for you both! I just can't imagine going through what you guys are going through and having to make the decisions that you guys are having to make! You two have to be two of the most strongest people I have ever "met". May God be with you both and your whole family during this difficult time. You guys are in my thoughts and prayers!! By the way Angela-Gunner told me to tell you "Hi" and to tell Christi "Hi" for him.
**MAY GOD BLESS AND BE WITH THE THOMAS FAMILY THROUGH THIS DIFFICULT TIME!!**
still praying here for the thomas-team.
Dearest Angela and Shayne,
Sending our loving thoughts and prayers to you.
I'm certain that God is preparing a beautiful entrance for Christi at the gates of Heaven.
"Go forth, O Christian soul, from this world in the name of God the Almighty Father, who created you,
in the name of Jesus Christ, Son of the living God, who suffered for you, in the name of the Holy Spirit, who was poured out upon you, May you live in peace this day, may your home be with God in Zion, with Mary, the Virgin Mother of God, with Joseph and all the Angels and Saints."
AMEN.
Prayers for Stength and courage,
Sara and Vic
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
I have never met you or Christi,but have felt honored and humbled to share in her journey. You have told of her struggles so elequently, that I feel she is nestled in my own heart. May the arms of our God wrap around you and Christi at this time. She is a beautiful child and she has fought her battle with dignity and grace. Please know that many pray for her peace. Take care and Godspeed. Julie Lowenthal
Your strength during this time is absolutely amazing. I'm sure I speak for everyone when I say that you need to do what is best for you and your family right now, and you do not have to explain what you are doing to anyone. Your privacy is very much understood! I for one appreciate the time you are taking to update the site and share your precious daughter with me. I enjoy the pictures and smile as tears stream down my face. I am helpless as I am sure even my words can not comfort you right now. My thoughts and prayers are with you... Know that your daughter has touched my heart in a very special way.
Angela,
I just wanted to let you know that I have been checking on Christi and your family daily, and my thoughts and prayers are with you. I have cried and prayed with all of you. Please know that you are not alone. Christi's spirit through all of this has been such an inspiration. May God bless all of you as you have blessed us with her story.
Ginger
Thinking of you.....
I pray that God will give you precious last moments with your daughter.
Much love,
Melissa
geesh what can i say at this point...yes those are all the common signs....you would think that the journey going to heaven it would be a more pleasant experience... but look at your little angel still fighting.. with that 105 fever and she is somehow still hanging on....she diserves the best angel wings and halo heaven has to offer.....
with much love always,
kelly
No words to make any of this any easier, just prayers for smooth transition for Christi to Heaven and for her blessed family and friends to carry on her tremendous legacy when she finally wins this fight that she has battled so courageously for so long. A true warrior she is...
I pray for you and your family.
RG
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
Hello Thomas Family,
Just wanted to let you know we are thinking/praying for you guys. Being in this same horrible situation with our son last year I know there are no words that can comfort you from such pain... just know that we and so many others care.
Sending our love and big hugs,
Linda & Pat Connolly
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.
Hi Thomas Team,
As I was driving home just now from an errand, I saw an eagle soaring high in the sky above my car. It was a beautiful sight.
It is a cloudy day here with low clouds and he stood out so much against the big cloudy sky.
I immediately thought of Christi and how she too will soon soar.
Just wanted to share that with you.
Lots of Love,
Sara and Vic
Christi is amazing,
as I continue to fight my battle with A.L.L, I am amazed at her strength, and when I have a bad day, I always seem to perk myself up because, if little Christi fought for so long and continues to fight, with little complaints, I too, believe i can do it...
Christi has, and will always be a hero to me and to hundreds of others who are following her story. My sister Jenny, who is 10 feels like Shayla, She's the loving sister of a cancer patient. She is so brave and amazes me with her maturity in the matter (Shayla as well as my sister).
My thoughts and prayers are with you Shayne and Angela as the time slowly comes to an end. Christi is a brave and miraculous little girl. She is an inspiration to us all.
GOD BLESS YOU ALL,
-LISA
How is Shayla?
I'm sure she's going nuts and is deeply saddened and will miss her sister more than anything, but she will never actually lose her, yes she'll lose her while on earth, but Christi will remain in her heart and will continue to watch over her as well as the two of you.
Much Love!!!
www.caringbridge.org/visit/lisaforss
Thank you so much for taking a few moments to update us on how Christi is doing. I check back often and pray continuously for your family.
I love the pictures, especially the one of Christi hanging on the clothes line.
I think everyone understands about you wanting to be alone with her.
Sending prayer,
Teresa
Dear Angela and Shayne,
I have often thought of death as our "second birth" and while no parent should ever have to be in your shoes, I can't help but think how profoundly deep it must be for Christi to have you there to "birth" her this second time. Remaining at her bedside much like your hours of labor preceding her first birth, the pain, the rhythm and flows of heartbeat and breath.
My heart is very much with you both while you give birth to Christi once again.
I can't believe I'm writing this but I pray for her peaceful passing and joyous "rebirth" into what lies beyond.
She has touched many and her life continues to have great impact.
Thinking of you all with much love,
Eliza
Dear Thomas Team,
Please know that my prayers are still with you as you struggle through this sad, final journey with Christi.
Oh Merciful Lord, please bless Christi's soul as you reach down from heaven to gently guide her to her home with you.
Diana
I found this site from little Asher's about a week and a half ago. I have checked for updates daily on this precious little girl. She is so amazing, and to read the LOVE from her parents is just breath taking. I pray for peace and comfort during this time for her and her parents.
There's no question this little girl is loved and she obviously gets her strength from her wonderful parents as well as our LORD.
Peace be with your family
Love,
Lori in Oregon
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.
I am a little sister who lost my big sister to a relentless and sinister illness. This is the prayer I said for my big sister and tonight I say it again for Shayla's:
Dear God if you are real:
Make her splendid as the splendor she showed me; make of her hair the most beautiful and fragrant petals; make of her bones the sweetest music that only the wind can play.
Let her know the love she made known to me.
Drape her soul in light, that she may feel the radiance she shared with me.
Comfort me, God, if you are real. That I may grow strong even in her absence; that she may know the comfort and joy she gave to me.
From one little sister to another with love.
Shanyne & Angie: You have both been in our thoughts and prayers these last months. Everything you have done has been out of LOVE, plain & simple. We pray that God will be with you and Bless Christi's little soul.
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!
I am checking again today; I find myself checking in every couple of hours, and when I do it leads me to join so many others in prayer for the Lord's mercy for ALL of you in the Thomas family.
"Lord, in your mercy, hear our prayers."
Elizabeth in Washington
From the depth of my heart .. God Bless You All! I feel she is already with him! Her body is just waiting for it's final "order" to shut down! She is at peace already! I hope you can find peace in that!
My heart is with you all!
Angela and Shayne - I couldn't stop thinking about your family today. To try and absorb what you are experiencing is impossible. I don't think anyone is offended that you have stopped accepting visitors - this is your time with your angel Christi. I think it's safe to say that we all feel that it is an honor to have been able to follow your beautiful little girl's journey. A friend of mine who has ALS once said: "Life has a way of turning on a dime and a matter of a few hours or a few days or even a few minutes everything can seemingly come unglued." I pray that Christi finds peace - and that when your life comes unglued, that you feel the warmth of our hugs and prayers from this large community of supporters that you have.
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