Tuesday, May 31, 2011

It's me Calli....

Hi everyone, this is Calli.

This just came to me, as I was laying down trying to fall asleep, the night before my surgery.

I see an apple orchard, without its fellow trees, it would not be as strong.  When one tree is sick, the others stand tall.

Bees come and they may seem to be taking your pollen, your nectar...but really in the future it will only make you and your fellow trees strong, when the bees cross pollinate.

Although a tree's apples may get knocked down, the planter will gather these and still use them with the other apples from the other trees...and he will add sugar and cinnamon and make a wonderful pie or tart.

When the planter comes and trims a tree's limbs for the first couple years, it may seem so harsh...but it is for the tree's good.  That way, when the tree bears it's fruit, it is strong enough to bear it's burden.

I.....I am an apple tree....you are my fellow trees.  These past years, God has been pruning my limbs....my soul....my heart...my desires.  

Now, I am strong enough to bear the heavy weight of the struggle I face.  

I will....I will need a stake to lean on.  Jesus is my stake.  He'll lead me with strong hands...stand up when I can't, He'll lead me because I can't do this alone.




This is a poem I wrote in March 2009 


Jesus and me In a tree

Picking apples

Eating, laughing

Enjoying time together


You should have deep roots in Jesus

Your love for Him

Should overflow

Like a waterfall never ending


He is your heavenly Daddy

Just call out to him

Daddy, Daddy


Come Play, 
laugh. eat, 
sing with me

Answer my questions

Love me


Nurture me in your word

Feed it to me, I’m starving

Give me all of it

Feed me with your Holy spirit

Feed me


Give me more apples

Throw them down at me

Throw them down

So I can eat them all up

IT IS WELL :)

Today we took Calli for her MRI.  I went in with her, and they told me that the magnets were very strong, stronger than most others.  I brought in my bible, and read Psalms 30 to 80.  I was so blessed reading them aloud, praying them over Calli's life, singing them in songs to her.  I know she could not hear me over all the noise, and when the noise stopped I would not...I know the techs heard me, but I do not care anymore. 

Part way through the MRI, the whole room shook, and my hair rose up, and my body got hot and I had pin-prickles from my head to my toes.  I kind of got scared for a second there.  I have had several MRI's, and been in the room for her other two & this never happened before.  I thought, "Man, they were not kidding, that is a strong magnet."  They came in to put in the dye in to her IV, and I told the tech what happened, and flatly said "Hmmm...that is strange I never heard of that."   I said, "I must have some special magnet effect in my body or something, and laughed it off."   Right after that happened, Calli had a terrible asthma attack and her oxygen level dropped to 80.  It took 10 minutes to get her back up to 90, she was so shaken, sweaty and did not even know what happened. 

When the doctor came in with this MRI result, we could see the image of the tumor- was much smaller, than the image on the cd that I have in my purse from Lehigh's MRI.  Could it be that the other MRI was that off? 

As I sit and think of this experience today, I cannot help but know and believe that God shrunk that tumor, and let me feel just an itty bitty ounce of His power.  


ALL IS WELL.  ALL WILL BE WELL.  We fully trust God.  We are at peace, Mike & I are in agreement, and we are not afraid- not one bit.  The enemy comes in with discouragement, condemnation and wants to tell us lies, and destroy our faith, hope and assurance of God's plans.  These lies tell us that this is happening to our child because we lack faith, that it is our fault because we did something wrong, that we need to be corrected, or that we sinned, or that Calli did something..., that it is not healing unless she is fully healed at once....

Those lies, all come from what WE did or have done.  Us.  Mere men. 

What about God? 

What does HE say about all of this? 

In Isaiah 55:8-9, God says,  "My thoughts are nothing like your thoughts, and My ways, are far beyond anything you could imagine.  For just as the heavens are higher than the earth, so my ways are higher than your ways, and my thoughts higher than your thoughts."  In John, there was a boy blind from birth, and Jesus's disciples asked who sinned...the boy or his parents?  He was allowed to be blind, so that the power of God could be seen in the miracle. 

How dare I begin to question why God does what He does?  I am not going to begin to ask God why, He is allowing this in our lives.  I am so comforted just knowing that He will perfect that which concerns us, so I don't have to worry about it.  One thing I must do, is stay humble, and worship, and thank God for this time of growing and change in our lives.  I can adjust my attitude toward God, and situations that He allows and pray for Him to increase the measure of faith that He has given to me.  Lord increase our faith, forgive us for our unbelief.

Monday, May 30, 2011

ENCOURAGING SONGS I HEARD THIS MORNING

Hi all, it's Calli, I heard these songs this morning and they really encouraged me... so I thought I would share them with you! 

There's a raging sea right in front of me,
Wants to pull me in, drag me to my knees.
So let the waters rise, if you want them to,
I will follow you, I will follow you.
                                


How deep the Fathers love for us, How vast beyond all measure,
That He should give his only Son, to make a wretch his treasure.
How great the pain of searing loss, the Father turns his face away;
As wounds which mar the chosen one, bring many sons to glory.
 I will not boast in anything, 
No gifts, no power, no wisdom;
But I will boast in JESUS CHRIST, his death and resurection,
Why should I gain from his reward?
I cannot give an answer,
But this I know with ALL MY HEART,
His wounds have paid my ransom.

Sunday, May 29, 2011

OUR DOCTOR :)

DR. PHILLIP STORM, MD.
Dr. Storm is from Children's Hospital of Philadelphia.
 He is the attending pediatric Neuro Surgeon at CHOP
According to CHOP's website, he is a WORLD RENOWNED pediatric neurosurgeon, and is also assistant professor of neurosurgery FOR PENN, also teaches at Jefferson and of course at CHOP. He received all of his training at the world renowned Johns Hopkins-, He is internationally known as a specialist neurosurgeon in spinal chord tumors

* Most Common Procedures - The list shows the volume of the procedures this doctor performs, as compared to other physicians who perform the same procedure.  This means he performs 50% more spinal chord tumor removals than other doctors. 
 Dr. Phillip Storm's Procedures Performed by Rank & volume

Brain Tissue or Tumor Removal Top 25%
Spinal Fusion Top 25%
Ventricle Shunt Replacement Top 25%
Brain Ventricle Shunt to Abdomen Top 50%
Skull Repair Top 50%
 
Spinal Cord Tumor Removal Top 50%

On top of all of that, He saved the life of our niece Tiffany, who at nine yrs old, she had a stroke.  This is just some info to alleviate some fears that some have been expressing about a second opinion or traveling to another doctor. 
We are so very thankful thought to live so close to The Nation's(if not the world's) number one (ties with Boston Children's Hospital) Children's Hospital.  CHOP is ranked number two for neurosurgery after Boston, but that is good enough for us!
Ultimately, we are not trusting the Doctor, but GOD.  God is the one who led us here, God is the one, who gives each doctor his breath, his skills. 
If some of you are interested, Johns Hopkins has some spinal chord removal surgeries on youtube- if you have a queasy stomach do not watch!  There are also some amazing stories of children who have had the same kind of tumors removed!

Blessings today!


Saturday, May 28, 2011

A poem by Calli-


 This Is Me
1997, that's the year that I was born,
Now I'm 2 + 11, Yeah that's right I'm 13.
My brother calls me a drama queen.
That's it, this is me, It's all I'm ever gonna be,
You're right, I say it plain,
At least I don't pretend that the sun is shining, when it's really pouring down rain.
I like to cook, love being outside,
I'd love to go on a horseback ride.
My eyes are green, my hair it's brown,
Mostly I smile, but sometimes I frown.
That's it, this is me, It's all I'm ever gonna be,
You're right I say it plain,
At least I don't pretend that the sun is shining, when it's really pouring down rain.
I'm just a girl living my life,
I've had much sorrow, I've had much strife.
But I've given my life to the Holy One,
Jesus Christ, God's precious son.
That's it, this is me, It's all I'll ever be,
You're right I say It plain,
At least I don't pretend that the sun is shining when it's really pouring down rain.

Calli wrote this poem earlier this year, yes, she does not pretend the sun is shining, when it is pouring down rain....and right now, the sun is still shining in our home :)

MAY 28

 I have been so blessed by reading Streams In the Desert with Calli each day through this.  It is the original 1925 devotional by Mrs. Chas. E. Cowman.  Today's just hit the nail on the head, and encouraged me so much to just Hold on to Jesus, cling to Him, give up my will, my way, and cling tight to Him and His.  

A precious friend, and father to me, always says, "The greatest struggle, is the struggle not to struggle."  It is so true, that when I stop trying to figure things out, and stop searching for what to do next, or even what to pray....... when I sit back and rest, and quiet my soul, when I am still...He begins to strengthen the desire to hold on tight and cling to the Him....He sends people to encourage us, and He establishes His plans.  He has prepared us for this journey.  I will write more about that through the next few days, but just wanted to share this with you today.

STREAMS IN THE DESERT
MAY 28
"I will not let thee go, except thou bless me ... and he blessed him there."
(Gen. 32:26, 29.)

Jacob got the victory and the blessing not by wrestling, but by clinging. His limb was out of joint and he could struggle no longer, but he would not let go. Unable to wrestle, he wound his arms around the neck of his mysterious antagonist and hung all his helpless weight upon him, until at last he conquered.

We will not get victory in prayer until we too cease our struggling, giving up our own will and throw our arms about our Father's neck in clinging faith.

What can puny human strength take by force out of the hand of Omnipotence? Can we wrest blessing by force from God? It is never the violence of wilfulness that prevails with God. It is the might of clinging faith, that gets the blessing and the victories. It is not when we press and urge our own will, but when humility and trust unite in saying, "Not my will, but Thine." We are strong with God only in the degree that self is conquered and is dead. Not by wrestling, but by clinging can we get the blessing. --J. R. Miller

An incident from the prayer life of Charles H. Usher (illustrating "soul-cling" as a hindrance to prevailing prayer): "My little boy was very ill. The doctors held out little hope of his recovery. I had used all the knowledge of prayer which I possessed on his behalf, but he got worse and worse. This went on for several weeks.

"One day I stood watching him as he lay in his cot, and I saw that he could not live long unless he had a turn for the better. I said to God, 'O God, I have given much time in prayer for my boy and he gets no better; I must now leave him to Thee, and I will give myself to prayer for others. If it is Thy will to take him, I choose Thy will--I surrender him entirely to Thee.'

"I called in my dear wife, and told her what I had done. She shed some tears, but handed him over to God. Two days afterwards a man of God came to see us. He had been very interested in our boy Frank, and had been much in prayer for him.

"He said, 'God has given me faith to believe that he will recover--have you faith?'

"I said, 'I have surrendered him to God, but I will go again to God regarding him.' I did; and in prayer I discovered that I had faith for his recovery. From that time he began to get better. It was the 'soul-cling' in my prayers which had hindered God answering; and if I had continued to cling and had been unwilling to surrender him, I doubt if my boy would be with me today.

"Child of God! If you want God to answer your prayers, you must be prepared to follow the footsteps of 'our father Abraham,' even to the Mount of Sacrifice." (See Rom. 4:12.)

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!

STREAMS IN THE DESERT
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.

MY CUP RUNNETH OVER”
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).

May 26-Please pray

So on Wednesday, doctors found a long tumor in her spinal chord.  So far, all we know is that is spans over 3 vertibrae, possibly more, but the other MRI results are not back yet.  We are taking her to Children's Hospital of Philadelphia tomorrow a.m. to meet with the attending neurological surgeon.  Because of the nature of where the tumor is, it must be removed- regardless if it is cancer or not.

A lot of thoughts are going through our minds right now.  She is only 13, and will turn 14 on June 12th.  She wants to travel the world and be a historical anthropologist.  She already asked me if she had cancer- i said I did not know.  She asked me if she would lose her hair...her long beautiful curly hair...I don't know....Can I ring bells mom?  I don't know. It is normal to question all of these things, as we are doing in these first moments of shock.....and as we do, we are going to God.  I am not asking Him why....but thanking Him for this opportunity to change myself, to change my thinking, to change the atmosphere around me.

One thing we do know, is that God orders her steps....He gives her each breath she takes, he created her in my womb, He formed every square mm of her body.  He will perfect all that concerns her....When I am afraid I will trust in Him, who alone can save.

Calli is so strong, and never complains.  As hunched over as she was, she would not even let me carry her bag.  She is in good spirits, and trusts in The Lord's plans for her life, words that have been spoken over her life, about hope and future.  She reminded me yesterday, that he makes the storm clouds as well as the Sun, and uses them for his purposes in our lives.

Maybe it has been a long time since you have prayed, maybe never, maybe it was just a second ago...but Ia m asking all of you, to lift up our daughter, our family in prayer today, and share with whomever you wish to do the same.  We believe and know that god hears the prayers of the humble, and are close to the broken-hearted.  In John 14, it says that If we ask anything in the name of Jesus, that he will do it.  I am asking you please pray in Jesus name for God's will for our child.

We love you all, and will try to keep you updated.

MAY 25-Found a Tumor

It all started when Calli wanted to put the trampoline together....

We got the kids a trampoline for Christmas, and three weeks ago it dried up enough to put it up.  Calli did not want to wait for Mike to put it together, and decided to pick up the 200 lb box by herself and started to put it together.  Really she knew that if she just started, that Mike would come and rescue her and finish it :)  Well, Mike, Calli & Aidan had it together in no time, and when it came time to jump- she couldn't.  Hmmm her back hurt so much on her spine.  She came & told me, and I thought it was just cramps or "growing pains."  When she still had pain and it was worsening a week later, I took her to her pediatrician, who did an xray- which was normal.  The next day, she started having numbess and tingling down her left leg, the day after that, both legs, the day after that it hurt her to talk, cough, laugh.  We were referred to an Orthopoaedist.  At the appt, they said how rare it was for teens to have real back problems, and that they see this all the time...but still Dr. Cope ordered an MRI.

IT took another week to get her MRI approved by our insurance co.  We went to Lehigh Valley hospital, and they did a lumbar MRI.  ON the way home, I stopped at my dear friend Nea;s house to see her new kitchen.  She only lives 15 mis from the hospital.  George was there, which was weird, because it was only 3:30 and he was not done work yet.  He assured me that everything was probably fine, because they would not have let us go, or they would have called the doctor right away if they saw anything wrong.  So I said goodbye and got in the car.  Three missed calls were on my phone.   One from the hospital, one from the doctor and one from Mike.  We had not been gone from the hospital even 20 minutes and they were calling for us to come back a do a thoracic MRI.

I went right back into the house, and George and Nea Prayed for me to be calm and that everything would be alright.  ON our way back, I stopped at the burger king, got some food for us, and called the doctor.  He told me that they found a tumor on her spine and they could not see all of it, so we had to go back right away and get another one.  He proceeded to tell me that he had already called the neuro-Surgeon at CHOP and made an appointment for us.  He also said "I am so sorry."

By now, I was a bit numb, and replaying the words he said...how do I tell Calli, Mike, Aidan, my family?  Lord my family has been through so much already.  I hung up with the doctor, and looked at my precious Callahan...my baby.  I looked into her sea green/blue eyes and said "You have a tumor Calli."  "I do mom?  Could it be cancer?"  "I don't know Calli, I don't know."  She shed one tear, and then picked up the devotional she reads each day and said to me "Mom I want to read this to you, I think it was for us today."  She read the following devotional to me:


STREAMS IN THE DESERT
MAY 25
"I endure all things for the sake of God's own people; so that they also may obtain salvation...and with it eternal glory" (2 Tim. 2:10, Weymouth).

If Job could have known as he sat there in the ashes, bruising his heart on this problem of Providence--that in the trouble that had come upon him he was doing what one man may do to work out the problem for the world, he might again have taken courage. No man lives to himself. Job's life is but your life and mine written in larger text....So, then, though we may not know what trials wait on any of us, we can believe that, as the days in which Job wrestled with his dark maladies are the only days that make him worth remembrance, and but for which his name had never been written in the book of life, so the days through which we struggle, finding no way, but never losing the light, will be the most significant we are called to live. --Robert Collyer

Who does not know that our most sorrowful days have been amongst our best? When the face is wreathed in smiles and we trip lightly over meadows bespangled with spring flowers, the heart is often running to waste.

The soul which is always blithe and gay misses the deepest life. It has its reward, and it is satisfied to its measure, though that measure is a very scanty one. But the heart is dwarfed; and the nature, which is capable of the highest heights, the deepest depths, is undeveloped; and life presently burns down to its socket without having known the resonance of the deepest chords of joy.

"Blessed are they that mourn." Stars shine brightest in the long dark night of winter. The gentians show their fairest bloom amid almost inaccessible heights of snow and ice.

God's promises seem to wait for the pressure of pain to trample out their richest juice as in a wine-press. Only those who have sorrowed know how tender is the "Man of Sorrows." --Selected

Thou hast but little sunshine, but thy long glooms are wisely appointed thee; for perhaps a stretch of summer weather would have made thee as a parched land and barren wilderness. Thy Lord knows best, and He has the clouds and the sun at His disposal. --Selected

"It is a gray day." "Yes, but dinna ye see the patch of blue?" --Scotch Shoemaker

 

After she read this, I called Mike, and he was just speechless. 



Calli