Soup for the Soul
An Innocent Time
As we tumble backwards into this strange abyss, we continue to be amazed at how incredibly selfless people are to an undeserving couple. At noon we had Matzah Ball Soup delivered to our door. The soup is supposed to heal everything even a broken heart-Thank you. For supper we had soup again. Delivered in person by my cousin from Virginia! Lucky for us they showed up because we put them to work on a few errands. Thank you Cheryl! (email us the recipe for the soup or better yet where we can buy it)
Pretty much that is where the good news stops. Christi is increasing pain chased by increasing Morphine and Ativan loads. She is written for a 100mg per hour limit of morphine. The docs assure us there is plenty of room to move up on the drugs. Eventually, if the morphine stops being effective they will “put her under” as in surgical anesthesia. No one can tell us if she will stabilize for a few days at this level or a few hours. Right now we are evaluating her hourly. Dr. Maris was in today. Although he did not have a whole lot to offer medically, he did give us comfort with his presence. He has not tried to distance himself from us or her pain. In fact he seems to intentionally soak in her pain as if storing it to be called upon for later motivation. Although there have been great advances in the care of the NB patients-the medical community will readily admit that they have failed to develop a successful strategy. I hate the thought that there are more kids being diagnosed every week and we aren’t much closer than four years ago to having a cure.
Special thanks to Olivia for the calendar, Angela loved it. Thank you to everyone for your heartfelt posts and emails. We are constantly touched by your ability to reach out to us and even as the good times come to an end. I won’t blame anyone for looking away right before impact. Isabelle in NYC thanks for posting to the site. You are a great big sis!!
Shayla had a sleepover with a friend this weekend. We hear that she was at the SE football game this weekend cheering on the Tigers. Thank you to all who have kept Shayla in your thoughts-she suffers the loss of her sister and the neglect of her parents-Lucky she is blessed with friends and family
Good night.
Shayne
posted by the Thomas team @ 7:05 PM
16 Comments:
Christi was the most beautiful baby!! I am praying so hard her pain stabilizes and they don't have to put her under. How awful that would be. Praying you get the chance to bring her home and that the vaccine becomes available to you!
Oh so many prayers!!
I hate to hear that she is back to the intense morphine. I hope she has a better day tomarrow, and pain free for some more days!
I also don't think Shayla is being neglected by you too. She is where she said she wants to be, and if you had any choice you would be back home with her. But that dirty dirty disease is not letting you..:(
I'm still praying for you all. Get well again Christi..soon...please?
I'm so very sorry to hear that sweet and precious Christi is again having increased pain.
Know that I'm continuing to pray for all of you in this most difficult time.
I love you all so very much. Please give Angela and Christi a big hug from me. Have Angela give you one back.
Lots of love and my prayers,
Heather
I am so sorry that Christi's pain is back and pray that she is comfortable again soon! Thank you for sharing her story - your story - with those of us who are strangers. Please know that Christi's impact is so large - so widespread! Here I am hundreds of miles away, and your sweet, young girl has affected my life immensely! A thousand thank you's! God bless that Thomas Team!!!
Love -
Kim
I'm saying constant prayers for Christi's comfort and for strength to you and Angela and Shayla. There is nothing harder than this - I cannot imagine. God bless.
Love, Kai
Dear Thomas',
How can anyone who has followed your dear family for four years look away now. In your toughest moments your fatihful followers will hold you up(or at least try to break your fall a little if we can). Please know that you are in our thoughts everyday as you battle this demon and as you watch your beautiful daughter deal with all she is enduring. We wish you all some peace and as a mother of three I know that Shayla is hurting so very much right now. You are in no way neglecting her. You are taking care of her by allowing her to not have to witness more than a young child should see. You are protecting her by allowing her memories of Christi to be of a sister who was peaceful and smiling. You are giving both of your wonderful children exactly what they need at this moment. It may not be the best situation but you are doing your best with the cards you have been dealt. Be strong, if you can, but know that everyone out here who reads about Christi feels your pain. No one will ever truly feel your pain but we too mourn the loss of another wonderful child to this horrific beast. By donating Christi's cell lines you may save the life of another child one day. We all know how hard it is to hear that your child has NB. Hopefully one day those that follow behind us won't know the pain we all felt when we heard those words and I know with all my heart that all that Christi has endured is sure to make a difference for some child in the future. I know that you would rather have Christi...so would I!!!!! I am sorry! No words really seem adequate right now. :(
Much Love,
Gin Bogert
I am with you throughout this journey...no looking away.
I am praying that you all get a good night's rest and that tomorrow is a pain-free day for Miss Christi. Sweet dreams, little one.
Thanks for sharing your family's journey - unfortunately your pain makes most of us realise how fortunate we are to have healthy children. I have only recently started reading Christi's story, but please know that my family prays for you all.
Sleep tight tonight, Christi! No pain, we pray. Only peace and love. It's so nice with Mommy and Daddy by your side. We love you, Thomas Team!
XOXOXO
Brigid and Celie
If someone going to Houston to pick up the vaccine and deliver it by hand to CHOP would convince Texas Children's to let you have the vaccine, please let me know. I live in Baton Rouge, which really isn't too far from Houston. From there, it's just a hop, skip, and a plane ride to Philly! :) My e-mail is metis_athena@yahoo.com.
-Sarah Smail
i dont think you have to fear any of us looking away. we have been holding you up this far and we will continue to do so. im so sorry to hear that christi is again in pain. the strength your little girl has shown puts the strongest among us to shame. she is truly a hero and a champion, and the bravest of warriors. as for shayla, is blessed to have two parents who have NEVER neglected her. she is simply coming to this in her own way and in her own time, as i guess we all must. shayla is a sweet, brave and caring girl, and she is so blessed to have you as her parents - and doubly blessed to have christi as a big sister.
i am starting to learn that neuroblastoma's pain reaches far beyond the patient - it makes parents doubt themselves; it makes siblings fear and cry; it makes people lose hope. i can't think of a more insidious disease. something must be done to find a cure.
angela and shayne, i would be happy to help you start a foundation in christi's name to raise money (along with the other wonderful foundations) towards finding a cure for this horrible, awful, evil disease. that's the only way i can think to help - even though my heart breaks to know it won't help your sweet daughter. she has just touched me so much. i am so angry - so hurt by what nb has done to you and your family. if i can help in any way, let me know.
as always, wishing for more time, and for no pain for christi...
Hi Thomas Team,
Just stopping in tonight to offer you my support. I don't have much else to say except that I'm keeping you in my prayers. I hope that Christi's pain levels off and that you have more time with her than you are expecting. I hope that she is at peace. I hope that Shayla is able to understand this time in her life some day, as it is such an awful and confusing one, and that her days today are filled with lots of laughter. Lastly, but certainly not leastly, I wish for Shayne and Angela continued strength and grace - the kind I've seen expressed in your postings.
-Brooke, in Logan, UT.
I pray for peace for Christi and the pain wil stop soon...
Praying this morning for you sweet Christi and both of you.
I pray that her pain has gone.
I love you all so dearly!
With love, prayers and tears,
Heather
BEND IN THE ROAD
When we feel we have nothing left to give
and we are sure that the song has ended.
When our day seems over
and the shadows fall
and the darkness of night has descended.
Where can we go to find the strength
to valiantly keep on trying
Where can we find the hand that will dry
the tears that the heart is crying.
There's but one place to go
and that is to God
and dropping all pretense and pride.
We can pour out our problems
without restraint
and gain strength with Him at our side.
And together we stand at life's crossroads
and view what we think is the end.
But God has a much bigger vision
and He tells us it's only a bend.
For the road goes on and is smoother
and the pause in the song is a rest.
And the part that's unsung and unfinished
is the sweetest and richest and best
So rest and relax and grow stronger
let go and let God share your load.
Your work is not finished or ended
you've just come to a bend in the road.
~ Helen Steiner Rice ~
Hi Thomas Team,
My son too has neuroblastoma. When my son went to his oncology appointment on Friday I learned that his doctor had taken on yet another case of NB. It tears me up inside to see these children face this disease with out a cure. I am so scared for our children.
Elizabeth "Austin's Mommy"
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