Morning Update
Christi woke up in a great mood and generally pain free. At this time she has not shown any interest in arts or crafts nor having us read to her much. This is so unlike her. Laughs and giggles accompany the PBS shows that she has watched since birth. Two bowls of Coco Puffs and three cartons of milk satisfied her for breakfast. There has been no curveballs for 24 hours now. If we knew that she wouldn't take an immediate turn for the worse we would head for home to do hospice care. Christi is being taken great care of by the wonderful CHOP nurses and we want nothing but the best continuity of care. The challenge of course is that no one has a crystal ball which leaves us guessing what to do next. Do we take her home for extended hospice care? It would be wrong to spend several months here if all days were like yesterday.
So we will plod along day by day for now and try not to get too high or too low. I have not given up on Christi yet, she is a fighter and may just write her own book until the end. Constantly, I have been reconsidering our decision to discontinue anti-cancer therapy. We had started thinking about taking her to Texas to get her cancer vaccine. It would have involved a ten day stay in Houston so ultimately we decided the risk outweighed the potential upside. Another option was irinotecan and although she has seen it before, I think she has always responded to that drug. We have even done that with home health care. Other options are pretty limited, although some other ideas still exist. Right now I am letting her little body give me clues as to what the ultimate course of action should be..,..
Shayne
posted by the Thomas team @ 8:32 AM
17 Comments:
this little girl is such an amazing fighter! i am so pleased you have had two good days with her - what a wonderful, miraculous gift!
i pray for your peace of mind and for you to find your way to the best decision for christi. your special little sweetheart obviously holds a few aces up her sleeve!
I'm glad she's giggling and eating. That's wonderful to hear.
She's a fighter that's for sure.
You and Angela are the best parents- whatever decesion you make will be the right one because it will be made with nothing but love for Christi.
I love you all so much.
Praying always for peace and strength,
Heather
OH YEAH! I love the happy updates through such an awful journey! I cried last night reading about Christi not heading back to school - ever! It broke my heart - you go on and Write your own ending to this story Christi ... We know you've fought this long ... who knows what you have left except for you - Shayne and Angela ... I pray that you have the strength to come to a decision on Christi's treatments ... I know I would fight until the end and you have fought this all so strong ... God Bless!
Rebekah from Prior Lake, MN
I'm so very glad to see this positive turn for Christi! It was devastating reading about her pain and seeing her condition the other night. But God is clearly hearing and responding to the many prayers people are saying for Christi!! I will redouble my prayer efforts, specifically asking for continued ease from suffering and also for intuition to guide you as you make the best decision for your daughter. It's really wonderful to see Christi overflowing with love, giving hugs and kisses, all smiles and courageous good cheer. She's already an angel on this earth, truly a brave, brave girl. Love and blessings to you all!!
Love, Kai
Praying for you both - Lord, give Shayne and Angela guidance as they determine the best next step for Christi's care and quality of life.
Amen.
Dear Shayne and Angela,
We don't know eachother, but I have been reading Christi's blog for the past few weeks. You are in my thoughts and I am SO happy that Christi is having a better day today!
I am praying for peace,comfort, clarity,and unexpected, happy surprises for you! All the Thomases are so strong, and where there is life there is always room for miracles!
Your Prayer Warrior in NYC,
Talia :)
You're a good dad. And Angela is a good mom. I know God will guide you in making the right decisions for Christi.
I haven't given up on her yet either.
I keep you all in my prayers always.
Kate
My heart is leaping with joy to see that sweet girl sitting upright. I know you guys want to burst into song every time she opens her beautiful eyes. I'm so happy that she's happy and that you guys are happy - and that you are getting moments are good. I will keep praying for more, more, more. God bless,
So glad to hear that Christi's pain is being controlled. Thank you, Jesus!!! Still praying for the miracle of miracles!!
I absolutely love the new pictures of the family. They are truely pictures to be treasured forever. Christi is a beautiful little girl and you are doing everything you can for her. You are amazing parents and you can always see the love in your faces in the pictures and the words you type.
Keep on Loving and Keep on Dancing......
Our prayers continue with each of you. Christi, you are an amazing and graceful fighter. You are a "Christi fighter". There really aren't words to describe you. You are so giving and loving and just seem like a "light" to be around. I am glad you have had some of the giggles lately. It makes me smile. Love, Tracy and Katia
www.caringbridge.org/fl/katia_leukemiapage
Amazing, amazing young lady you have there - what good news - like I said, moment by moment - You know Christi like no others - you are right to watch her and let her guide your decisions - the only Other who knows her better than you is already guiding your path and most of all Christi's and He will not let you down or allow a wrong decision to be made - trust in that! And, Christi keep those smiles and laughs coming at your Dad's silliness and those Hugs and kisses showering on your mom and dad! We are here praying and there is proof it is working!
I'm so happy to hear that your day is starting off with giggles and snuggling up to watch PBS. I so hope that there are many more such moments for the three of you. I continue to pray for Christi and for you all, and especially that you will be guided toward whatever is the right option for your sweet girl.
Continued praying, praying, praying in Atlanta. On May 12, 1997, I was reeling from the death of my first child, a beautiful boy named Noah, and pregnant with my second. Later that year, my precious daughter was born. When I look at the pictures of your sweet Christi, I see a bit of my babies in her. Like your Christi, my children have/had big, big eyes, polite patience and the sweetest God given spirits.
Love bears all things
Believes all things
Hopes all things
Endures all things ~ Corinthians 13 1:4
Praying, believing and hoping from afar. God bless.
Wow, Christi is one amazing young lady! No one else is writing the ending to her story but her. You go girl! So glad the pain seems to be under control and that she is eating...holy smokes what a turn around. Maybe she is making that u-turn like I wrote about once before. I certainly pray so.
What hard decisions you are faced with, stay at CHOP or try to get home. If I had a motor home I'd pick you up and take her home in style and comfort. Even though a plane would be the fastest the air pressure might bug her. Maybe you could talk Dr. Maris into a road trip on his day off so Christi could be home in her own bed with Shayla and her kitties and then he could fly back home. At least if something happened on the road he could admninister some pain meds if necessary. Any angels out there with a motor home willing to take a trip to Tiffin?? I'd help chip in to buy Dr. Maris a ticket back home. Just a thought.
Continuing prayers & warm thoughts. Anying I can bring down, food, clothes, whatever..... ??
-Melissa B
(Sylvia - thonmom06 - if you happen to read this I'm local to you.)
you're all in my thoughts and prayers ::big hugs::
We've been checking in on you guys every day - Christi, you continue to amaze us all. You are a treasure - your life has touched so many people.
Sending you strength,
~ Austin, Tom, Nick, and Claire
(and the whole Rally Team)
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