Saturday, May 28, 2011

May 27-long Day at Hospital

We do not know much more yet, just that the tumor is bigger than we thought, much- and needs to be removed asap. The tumor is IN her spinal chord- not such a great place to be. The surgery is set for Wednesday the 1st at 7am. One of the nation's- if not the world's top neuro-surgeons will be operating. Phillip Storm from CHOP.

It is hard, as a mother, to watch before my eyes the fast progression of the effects this tumor is having on her walking. Basically over the last two days, her condition has worsened. Calli is so weak, especially on her left leg. She cannot walk without stumbling or falling, and Mike and I now must be by her side while she walks. It is so hard for her to admit that she needs help..... She is so strong, and determined and un-phased by this...

The surgery will be a radical resection. Basically they are going to cut her down 3/4 of her back, from T8-L-2, do a complete lamenectomy (what my dad just had!)- which is cutting off the backs of the vertibrae, opening up the spinal chord and removing any of the tumor that they can. She will be in the PICU for at least 5 days, possibly more depending on the outcome. They told us all of those horrible scary things that could happen to her, and she just shrugged- again not phased....the big "C" was brought up- she says, "It does not matter if it is that." This is not a naive 13 yr old, this is a trusting, intelligent and secure one. But she is not secure in me or Mike, but in God.

There are several tumors that this may be. One is easy to remove- but you really have to get all of it...and no radiation or chemo needed...on the other hand there is one that attaches itself to muscle and nerves, and it is terribly hard to remove and she will need chemo & radiation. Then there are other very aggressive ones. They will not know till they open her up. THe surgery may be anywhere from 5-15 hours or more. She will need at least one blood transfusion and will be vented possibly after surgery as well.

They will biopsy when they remove it, and Calli is part a a new study and research for spinal tumors, since they are so rare. We will go from there.

Lehigh HOspital messed up the MRI's and did not get a good study at all, so MRI's are being redone with doctor in room to mark up her body where he will cut and also they are doing a scoliosis workup as well- this all happens Tuesday. They may have to put a rod in her back, not sure yet.

While we are fully trusting in God, while still a bit emotional, she is un-phased, full of hope, rest and assurance. She is quiet and sleeping in the boat, while the storm rages around her. She is so strong, and such an inspiration to me...her mama. I am so thankful that Mike has time off from work. We are so convinced that God will fully provide all our needs.

We are so thankful for the continued prayers!

MAY 27
"Bring them hither to Me." Matthew 14:18

Are you encompassed with needs at this very moment, and almost overwhelmed with difficulties, trials, and emergencies? These are all divinely provided vessels for the Holy Spirit to fill, and if you but rightly understood their meaning, they would become opportunities for receiving new blessings and deliverances which you can get in no other way.

Bring these vessels to God. Hold them steadily before Him in faith and prayer. Keep still, and stop your own restless working until He begins to work. Do nothing that He does not Himself command you to do. Give Him a chance to work, and He will surely do so; and the very trials that threatened to overcome you with discouragement and disaster, will become God’s opportunity for the revelation of His grace and glory in your life, as you have never known Him before. “Bring them (all needs) to me.” –A. B. Simpson”

My God shall supply all your need according to his riches in glory by Christ Jesus” (Phil. 4:19).

What a source–”God!” What a supply–”His riches in glory!” What a channel–”Christ Jesus!” It is your sweet privilege to place all your need over against His riches, and lose sight of the former in the presence of the latter. His exhaustless treasury is thrown open to you, in all the love of His heart; go and draw upon it, in the artless simplicity of faith, and you will never have occasion to look to a creature-stream, or lean on a creature-prop. –C. H. M.

There is always something over,
When we trust our gracious Lord;
Every cup He fills o’erfloweth,
His great rivers all are broad.
Nothing narrow, nothing stinted,
Ever issues from His store;
To His own He gives full measure,
Running over, evermore.
There is always something over,
When we, from the Father’s hand,
Take our portion with thanksgiving,
Praising for the path He planned.
Satisfaction, full and deepening,
Fills the soul, and lights the eye,
When the heart has trusted Jesus
All its need to satisfy.
There is always something over,
When we tell of all His love;
Unplumbed depths still lie beneath us,
Unsealed heights rise far above:
Human lips can never utter
All His wondrous tenderness,
We can only praise and wonder,
And His name forever bless.
–Margaret E. Barber

waiting...and waiting to see the Neuro Surgeon

OYE- this is a perfect pic of the three of us...ha ha

Mike was literally whizzing her down the halls

popping wheelies- she loved it!

“How can He but, in giving Him, lavish on us all things” (Rom. 8:32).

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