From the Second String Blogger
Hello from the second string blogger (Shayne). Angela and Christi are in Philly with our good friend Shari. At this time Angela has limited access to the internet so I will have to try to give a synopsis of todays events. They left the house at 4:30AM after a long restless night for Christi.
Monday evening was somewhat uneventful. We had an extended pre-bed ritual, Angela read and finished her bedtime story (Millions) then I read and finished my book (Captain Underpants). We hate to finish books separtately because we feel left out. After stories Christi and I layed in her bed and joked and giggled for about an hour, I fantasized about these symptoms being phantom disease or just an allergic reaction. Our little inside jokes are what I am going to miss most. One is that she kicks off all her covers and says "Daddy tuckey me" which I reply " I can tuck, daddy KenTucky". Then I ask all her stuffed animals if they are Dutch and Pekachu replys "No I'm Japanese" We don't really remember how they got started, however, it is part of the light hearted humor that gives our home its rythem.
Shortly after we settled in and fell asleep Christi began to complain of pain. I sat and watched as she rolled and tossed, holding her head, rubbing her eyes, sitting up and then flopping over. She was exhausted yet in pain. By 3 AM I knew we were in for a dissappointing trip to Philly, this could be nothing except full disease progression.
Angela, Shari, and Christi flew to Philly from Cleveland (thanks Lisa). My contact with Angela throughout the day was sporadic, however, I could tell that Christi was slipping. Before they left Christi reported pain in her jaw, eye, top of her head, and part of her face which was sort of numb.
After visually observing Christi's bumps and lumps then seeing that the LDH markers had nearly triple to over 3500 (420-750 normal) the nurse practitioner affirmed our fear. The disease is spreading like wild fire. Our decision was to consider whether we should treat or just take her home. No clinical trial could be arranged fast enough to have a chance of stopping her disease progression. Something needs to be pulled off the shelf ASAP.
So through the generous help of a fellow NB fighting family the girls landed in the Four Seasons hotel downtown Philly (not bad ehhh?) for the night while we await the MIBG scan tomorrow. After the scan results are known we will have the most significant discussion of our lives with Dr. Maris.
posted by the Thomas team @ 4:58 PM
21 Comments:
So truly sorry for the trials your family is enduring. It's like a nightmare you can't shake. We pray for your faith and strength tomorrow as you face decisions no parent should ever have to consider. Peace and courage to you all.
Oh my what your family is going through :( MY heart breaks EVERYTIME I read this news about Christi I have never posted before but I just feel like I should tonite I am sitting here crying for you and your family :( I have 2 children myself 10 and 7 and I COULD NOT Imagine going through what your family is I WILL CONTINUE TO PRAY FOR YOU and CHRISTI I hate to see her suffering Take care and WE WILL BE PRAYING VERY HARD. GOD BLESS
I am so sorry, Dear Lord please heal this precious gift from you, Lord we are not ready for her to come home to you. Give the dr the info. needed to let this little girl live. I am so saddened by the events of the past several days. I have followed little Christi's page for a couple of yrs and I am devastated at what is happening. My church family is joining me in prayer for your precious daughter. I ask that GOD wrap his arms around each and everyone of you and that you feel him and his love during this very difficult time.
Debbie Waters
Thomas Family,
I am saddened by today's news, you will know in your hearts what to do for Christi. I pray that she gets some pain relief and is at least comfortable, it's never easy watching a loved suffer especially a child.
Extra prayers tonight,
susie
that just totally broke my heart. I love that girl.
just stay strong.
I'll check back tomorrow.
I can't believe this. I wish there was something I could say or do. Just know that I love you guys and we're all praying as hard as we can.
-Traci
Heartbreaking...sitting here crying for your family. No parent should ever be in your position. Praying like I've never prayed before that you all will have the courage and wisdom to make the best decision tomorrow.
Lots and lots of love,
Jennifer
Traci just called me. I'm heartbroken for you and I wish that I could do something to make this better. The best I can offer is that prayers are being said right this second all across the country for your little girl.
I hope that some sort of treatment presents itself for you, no matter how unlikely.
With love,
Sarah Smail
WE LOVE YOU, THOMAS TEAM
XOXOXO
Brigid and Celie
My heart is absolutely breaking. I first found Christi on MACS when she was first featured, and I have prayed for her ever since. I've never signed in or emailed you all before, but my heart is absolutely crushed and I am fighting back tears as I sit here. I am praying for a miracle.
Christi and Shayla are both beautiful girls. This is all so heartbreaking and unfair. Your family is the most amazing I have ever seen and Christi is so smart and talented, it breaks my heart that this is happening to such an amazing child and her family.
Praying for you daily,
Alayna
Dear Thomas Family,
Sending my love and concern. Christi is a truly beautiful human being and I wish to show that there is support for your trials down in the Southeastern part of the United States.
Love and Admiration,
Adam Bowles
Dear Thomas Team,
I am so very sorry that any of this is happening. I can't know how devastated you must feel, but as the parent of two grown "kids", I can only imagine. I would say that next few days, weeks and months will be challenging, but that would imply that what you have been through hasn't been - of course it has, and you have not simply risen to meet that challenge, but you have superseded on every front. Your family is a stellar example for the rest of us. I wish we had something more to offer you than prayer, but then again, as you have shown us so many times, prayer is powerful. Prayers going up.
Susie
NO!!!!!!!!!
Give this beautiful family strength dear Lord. Please Lord, heal Christi! Stop this beast! Heal her Lord, take the cancer away from her sweet body. Please dear Lord. Please! Please!
Your family is in my thoughts and prayers. I pray that God will continue to grant you his strength and comfort. Also praying for little Shayla too. God bless your family and guide you through tomorrow's meeting.
I figured that I should tell you how much that I admire your family now after following your site religiously since May. My sister was diagnosed with cancer back in April, and is currently off treatments. However, her cancer was quite nasty and she made need to go for a stem cell transplant if the cancer didn't totally respond to the treatments.
Anyway, after her diagnosis, I came across the website's of countless children, but not one family's spirit struck me the same as yours. I read through every last journal and looked at each picture. Your journals are so wonderful and I always look forward to 'Christi's funny'. No matter how badly that things were going for your Christi, you always manage to not sugar-coat it, but take the positive out of it and make the most of each situation.
Christi was handled a very tough battle but seeing and reading about her, you'd never think that something was wrong in the least. The strength that is in such a young girl is just mind-blowing. I can't explain how much of a positive impact that your daughter's way that she lives makes on my life each and every day. She's gone through more tests, trials, and pain that any living being should ever have to endure and she has handled it with all of the grace in the world. Your family would travel around the world if it meant another shot at life for your Christi. The way that you handle crisis and unfortunate situations is just inspiring. Your family is so supportive and I wish that everyone had the chance to hear your story.
I will keep Christi and all of you in my prayers tonight as always and pray for a miracle during this trip to Phili. If God had to grant just one more miracle... none could possibly deserve it more than Christi. God bless and good luck!
http://www.caringbridge.org/visit/julie
My heart and prayers are with the entire Thomas team. God Bless all of you, Erin
Dear Shayne....this is going so fast! We are so so das. I just never imagined it would go this fast!
Love and Prayers to you all!
Mary and Molly Hollway
Thomas Team.
I feel truly blessed that through Traci and Jenn, I have had the opportunity to meet this courageous team. I have since I first met all of you, and will continue, to send my prayers and best wishes that this beast leaves this sweet young lady.
I truly wish there was more I could offer other than just words.
May God forever bless all of you, and continue to give you strength to see this through.
- Greg
Dear Thomas Team. I have followed Christi's journey from day one. I work with Val Phillips. I am just devastated at the latest news. Please know that you will all be in my prayers constantly these next few days. Christi has such a wonderful spirit, and I have asked my fellow church members to have her placed on the prayer network, so that there is never a minute in the day when she is not being prayed for. God bless all of you, Ellen
HUGS to the Thomas team.. I have been following your story for a few years now... I hate to hear the current news, but pray that Christi can fight through this. Thinking of you in California...
Dear Shayne, Angela, Christi and Shayla,
We are very saddened to read the latest updates. We continue to pray for Christi and your family and pray that the treatments will be successful in beating this beast.
Love and Prayers,
Charlotte and Rich (Port Huron, MI)
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