Saturday, June 25, 2011

Beautiful Things

Calli awoke to this song, a cold morning this past February.  She and I had just begun reading through the Bible in 90 days.  We had made a commitment to one another.  We got to Romans, before this all began.  REading the Bible, on our own- unfiltered....we learned so much about the real heart of God.  

I never had to remind her, rather, she was reminding me.  I would get up at 6 am to pack Mike's lunch for work...and her light was on, she was reading, absorbing and growing in the word of God.  It was only a few days later that she woke up and this song was playing through her mind...the words.  She asked what I thought it meant. 

Now we know.  Please take 7 minutes and listen to the words, the lyrics, the music.  I posted it that week she woke singing it, and someone warned us that it was a "dangerous" prayer to pray.  IT is, it was. is our prayer.

by Misty Edwards

Awake, awake o north wind,
Awake awake o south wind
Blow over me

Come o winds of testing

Come winds of refreshing
Blow over me

Awake, awake o north wind,

Awake awake o south wind
Blow over me

Come o winds of testing

Come winds of refreshing
Blow over me

Let the winds blow(15x)

Fling wide the door to my soul

Open up the door to my heart
Have your way, have your way
Have your way yeah

I won’t be afraid

I will face the wind
I won’t be afraid
I'll embrace the flame

Let the winds blow(15x)

Fling wide the door to my soul

Open up the door to my heart
Have your way, have your way
Have your way yeah

Fling wide the door to my soul

Open up the door to my heart
Have your way, have your way
Have your way yeah

Take me through the fire

Take me through the rain
Take me through the testing
I’ll do anything
Test me try me prove me refine me
Like to gold, like to gold

Fling wide the door to my soul

Open up the door to my heart
Have your way, have your way
Have your way yeah

Fling wide the door to my soul

Open up the door to my heart
Have your way, have your way
Have your way yeah

Take me through the fire

Take me through the rain
Take me through the testing
I’ll do anything
Test me try me prove me refine me
Like to gold, like to gold

Please continue to pray for Calli...pray that she eats, that her headache goes away...continue to bless her with your spoken words..over her body over her life...

The Word of God says and promises that the Angel of the Lord encamps around those that fear HIM, and Delivers them...

Lord, we are reminding you of Your word, as Moses reminded you....You promised that Your angels would encamp around Calli, she fears You, respects you and loves You Lord...encamp about her stomach, her throat, her brain, her ovaries, her intestines, her liver, her kidneys, her heart, her lungs, her pancreas, her mouth, her teeth, her ears, her eyes, her legs, her hands , her arms...Lord...encamp around them, protect them, shield them...Guard them under the shadow of your wings.

We are finding JOY in the simple things like sunshine and flowers.  Speaking of garden is blooming, there are so many tomato plants and squash and pumpking and watermelon plants blooming- that I NEVER planted.  Marigolds are everywhere, sunflowers and orange cosmos too...God is showing us so much life right now, here in our own little back yard, simple beauty, simple life in the midst of this chaos.  Sweet moments, loving on God, really  Him loving on us.  He continues to make beautiful things out of the dust <3

Wednesday, June 22, 2011

Let's Survive this together

We are home from the hospital, but still must travel each day to Philadelphia for radiation at HUP 5 days a week, for 6-7 weeks.  Three times a week, we also have doctor's appts & Oncology clinic, where they check her blood counts etc... On top of that, we also will have physical therapy beginning next week, three times a week as well.  So, I am kinda busy :) 

Treatments started, and Calli is SO exhausted, and really having a hard time keeping anything down in her stomach :(   Today I went out and bought everything I could think of that she can try to eat and /or tolerate.  She has been having a lot of trouble sleeping, due to pain, and horrible migraines.  

On top of all of that, her bed was not working out...she could not sleep at all, which makes her tense, and then she gets bad migraines.  Mike and I were both up at least 4 times a night with her, trying to get her comfortable.  I bought wedges, body pillows, memory foam mattress covers, memory foam pillows etc...nothing works.  Finally, She tried to sleep with me, but that did not work so well either, so her doctor ordered a hospital bed for her.  

Well, we were thrilled with that, until we found out how much they are to rent per month!  OYE!  So, I found out that the local lions club has ones for free to rent to the community, and I went over this morning before we left for the city to check them out.  Yucky, I mean, there were a lot of them, but they were very old, and crank kinds, and the guy was unsure if all of the pieces were there thought was that it will be ok, it will all work out...somehow.

We then went to the city, Mike was able to take off again, (God bless you Chris  Landes!)  I do not know what I would have done without him.  Not only is he strong enough when I have no energy to lift the wheelchair in and out of the suburban, but right after I gave Calli the anti-nausea pills, like 8 seconds later, she began to vomit.  We were on 76, & she threw up copious amounts.  He had to pull over, so I could look through the vomit and try to see if she threw up the meds I just gave her.  They are timed meds, and quite a few of them, and if she did not get these down, she could not get the next ones down which were due in a half hour- her chemo pills.  They are timed with the radiation schedule...So, no pills in the mess, I washed my hands with a wipe, and on we went.  He was able to help out so much.

Tomorrow he is back to work for good though :(  We will get through!

She made it through her first radiation really well.  She was SO tired after though, and threw up the rest of the day :( 

We got home between 3-4 ish, and I had to go to Walmart, grocery shopping, and then on to another pharmacy.  It was as I was walking into Walmart, that I saw Harleysville Mattress.  I walked in thinking that they MUST have an electric bed.  They did! A great one with a super soft mattress too.  The guy was so nice, it is a special order, but I NEEDED it tonight, so that my baby can sleep.  I asked him if I could buy his new floor model.  "No."  Well, I asked him again, and told him that she needed it tonight, and he said "Yes."  It was pricey, but he took off several hundred dollars, and did not charge me tax-which was another hundred or so, because I had an Rx for a hospital bed.   We would figure out how to pay for it later.  Well, you know that ask and you shall receive thing?  I made a phone call, and asked, and the Lord gave- willingly.  I don't want to mention names on here, because I want them to get the Glory and blessing from God.  

All of you that have given, meals, cleaning my bathroom, watching my dogs, feeding my chickens, helping with Aidan, the cards, it has meant so much to us.  It is helping to pay the weekly gas bill for driving down each day.

Each day I want to sit and write thank you notes to all who have been so generous and kind to us, but there is just no time right now.  I am really sorry.  Some day, i will sit down and be able to write each of you individually and thank you for all that you have said, done and given to us.  Thanks so much for helping us, praying for us, and believing the best for Calli!

As my child is sick, and in pain, and cannot find physical rest...I must keep my mind on good thoughts, on God and His plans for her life.  It is so hard to watch your baby go through things like this.  She is strong, but she has moments where she just wants the pain to be gone.  At times, she does not understand, and I remind her that God loves her, and I remind her that each pain she feels, Jesus felt.  Why?  Because HE himself bore all of our sickness and diseases on the cross.  It is finished, done.  I am not sure how or why if it is done... that she must bear it now, but that is not for me to worry about or question.  It has been 3 weeks since her surgery.  So I am just thinking how quickly radiation and chemo can go.  6 weeks...  

Psalms 34:18  "The Lord is near to the brokenhearted, and saves those who are crushed in spirit."

The other night, when Calli was in so much pain, she asked me to sing this song to her.  As I did, I was stroking her hair, and she began to cry.........

Let's Survive This Together
Let’s survive this together
We’ve survived so much together already
But I want to live through this with you

This is why I’m alive

Its moments like this I want together with you
Let’s just take tonight and breathe again

You feel pain tonight

You won't always feel this way
You feel plain tonight
And it's going to be okay
It’s going to be okay

Let’s survive this together

We’ve survived so much together already
But I want to live through this with you

Sunday, June 19, 2011


It seems to me, that whenever a good thing is coming our way, satan always brings the yucky stuff to thwart a blessing; to get the attention on him and his nasty plans, instead of the simplicity of the Lord, and His simple blessings.  It seems that more and more  this happens, the more the Lord is teaching me that it takes actual effort on my part to "Take every thought captive."  To purpose to focus on a single moment, live by moments...not worry about  tomorrow, or even the rest of the day.  Each hour has enough trouble of its own.  It takes a purposeful action to look past the circumstances that are before us, and see past them to the simple goodness of being home.  The smells, my bed, my dogs, my garden is blooming & so full.  All of my flowers are blooming, because my mother-in-law watered them more than I ever would have. 

With all that surrounds us, the daily tasks, the emotions, the mess, the drama...
HE never leaves.  In the middle of this chaos, brokenness, messes......He is everything, He is our Strength..He is in the middle of it all, He is bringing life. 
He never leaves.
We need to look for Him and Him alone in the middle of this. 
Put aside our own thoughts, our flesh, our ideas, our words...and look for His.

So, we were discharged on Friday.  We had some trouble with the insurance company, but Mike's boss is just such a blessing, and has listened to my cry, to ask them to do what we need.  It is done. 

You have not because you ask not.  Just ask Lucy, just ask ME, step out, be bold, ASK ANYTHING.  A king would wash his servants feet...why would he not give us these small things.  He is Jehovah Jireh, our provider <3

So we got home, and realized that the hospital ordered Calli a junior walker and a junior wheelchair- she is taller than me- 5 ft 6"...oye.  She really wanted to gather together with our fellowship, as we do each Friday night.  We were all so exhausted, and it is 3 pm.  I realized that she cannot walk, or go anywhere without the right size walker and wheelchair.  So I called the company- "NO."  Well, I wasn't gonna take no for an answer, I cried, yes I cried,
"This is the desire of my daughter's heart Lord, to see her friends, to worship, and be normal, to gather as we do each week with other believers and pray.  Lord, I need it too, I need to worship together with other believers today, and get my mind off of this, and onto YOU."
So I told the lady on the phone that very thing, the truth, we need that walker within the hour, so we can leave.  The owner of the company drove out to our home to deliver the right sized walker....we are gonna work on the right wheelchair on Monday- and we will get it.  Be bold.  Ask and you shall receive.

So we gathered together, shared a meal with several precious families that the Lord has given us as our family.  We sang and worshiped without instruments.  There is something about just voices, that hits me deep.  Don't get me wrong, I LOVE music, musical instruments, but our voices- all of our voices are sweet and deep and strong musical instruments. 

Put on a Garment on Praise for a spirit of heaviness.  Are you feeling heavy in spirit today?  DO you feel crushed, perplexed, sick, down or depressed?  WORSHIP!  PRAISE!  NO MEDICATION can give you the peace, the calm, the rest that worship does- close your eyes, turn on worship music- not the radio, not songs sung about relationships, but songs of worship- open your bible to the Psalms, and pick one that speaks to step out and sing, SING A NEW SONG TO THE LORD.  Don't be afraid- a new song will come to you, ask for it-healing comes down as praises go up!  Fear not!

The Lord inhabits the praises of His people- do you feel taken over or inhabited by fear? worry? doubt? pain? anger? lust?  SING!  PRAISE!   I need to remind myself daily, it is SO easy to focus on myself, or our situation, and get down, get sullen, worried, afraid....but we are called to worship, were created to worship.  How do you worship? some people play an instrument, some sing, some paint, some dance....worship-- praise God- He WILL inhabit you!  Here is a song that is just awesome, it is 15 minutes long- no picture on the video, just turn it on, close your eyes, listen, worship- listen to the words- take 15 minutes, and worship, listen.

We were so thankful for all the cards and meals, and a treadmill that was loaned to us for Calli- she walked on it 5 times yesterday!  Aidan was running on it too, it made him feel good.  Speaking of Aidan, he smiled yesterday morning when he awoke and saw us- a pure wonderful smile.  Then he said, "Mom, it feels weird to smile." 

Awww, my little Aidan, has had so much sorrow and sadness and tears and anger in his life...this much is true.  When talking about his sister yesterday, he had so many questions, and in answering them, I told him that I don't want to be angry with this path God has chosen for us to walk on, we need to trust that God will bring us through this. 

I was so angry when Mike's dad died.  I was mad at God then, we all were.  When it happened, I asked why God allowed this man, who loved HIM, who was a good and right and wonderful grandfather, husband and father die?  I did not understand then, I was so weak, but I understand now. 

So, "Lord, we have said so many times.."Here we are, send us."  And you have God.  You are sending us down this road, because your word says that we are to REJOICE, for the steps of the righteous are ordered by God.  Lord, you are God, who are we to say where you should send us?  Who are we?  You must think we are strong enough, and love us enough to let us go thru this...just to point to YOU.  I want to point to you.  I am a nobody, a nothing, you have preserved me through so much Lord, I am such a failure in so much, I mess up, I say too much, or not enough....Lead us Lord, teach us Lord, in this let us reflect You, and not deny You or Your name.  Thank you Father, for this journey, thank you for the obstacles, because when we jump high over them, it just strengthens our legs."

Marsha, a wonderful woman of God, a true example of temperance, dignity, poise and and peace, sent Calli this verse.....
 Micah 4: 6-8
6 “In that day,” declares the LORD,
“I will assemble the lame
And gather the outcasts,
Even those whom I have afflicted.
7 “I will make the lame a remnant
And the outcasts a strong nation,
And the LORD will reign over them in Mount Zion
From now on and forever.
8 “As for you, tower of the flock, Hill of the daughter of Zion,
To you it will come—
Even the former dominion will come,
The kingdom of the daughter of Jerusalem."

Really all of Micah is wonderful, just read the whole book actually , and you will be blessed.

Here is a picture of the new walker...that I painted for Calli- no more dull gray :)

Wednesday, June 15, 2011

She is a mighty Oak tree

The last two days, were very hard for Calli. 

Monday, Mike and I took her over to University of Pennsylvania, & met with her radiation oncologist.  He told her all sorts of scary things she, nor we needed tohear right before she was going to go into a room without us(no parents allowed_ and proceed to lay her flat into a position she is not able to be in, due to her surgery...then they would scan her, tattoo her and make a plastic mask to go over top of her entire face and head...and then bolt it down and scan her again for about 30 minutes.  This is all necessary to line up her brain with her spine and make sure they are only radiating the areas needed.

Well, I asked the doctor is he could give me special permission to go in with her...I mean why is a social worker allowed in to comfort her,And I am not?  So .....he said yes!  I went it, but she did not fare so well, was in terrible pain from the flat position, and could  not go thru with it. 

I will say, that I am a strong person, but it was so hard for me to see her writhing in pain. We tried for over an hour to get her in a position where they could still line her body up go.  we came back to the room, exhausted and she slept for hours.  That evening I was so thankful for God and Mike, and the encouragement that He gives us, because we went through some more hard stuff that night.  After that passed, at 11 at night, Calli tells me she wants her hair cut.  What?  Now?  yes,now.  OK. 

It was hard for me..... smelling her hair, combing her long beautiful locks, braiding each one...then cutting.  It was a first step for her, an acknowledgement....For me, I was so very proud of her determination, her strength & dignity.

So yesterday, we decided to try the radiation simulation again, and at first she was in the same pain, but they figured out how to put a squishy thing under her ...then suck the air out of it- so it molds to her body.  well, it really helped and her pain was gone  They just have to make sure it is in the same spot each time she gets her treatments.

Last night was hard for us both, as Mike went home :(   First time in almost two weeks without him, and I was a bit of a mess....I miss him, he is such a support and has really been making all of the decisions here, and about things at home too.  He went home to be with Aidan,- much needed father-son time :) 

Our roommate's mom, blessed us today, she is a wonderful Jewish woman.  Her daughter has been such a fun person to be around, she tolerates me, likes to keep things tidy,a dn it has been such a family atmosphere in our room.  SO her mom came today and came in with a turquoise SPF wide brimmed sun hat for Calli for the summer.  Due to radiation, she will not be able to get in the sun, unless she is completely covered.  Then, she came back from doing her daughter's laundry and brought Calli back an encouragement quilt, and some warm crocheted winter hats for her, that someone had donated. 

She also gave us this poem, I cried...a lot...this poem is my daughter Callahan Mae Derstine


by Johnny Ray Ryder Jr.

A mighty wind blew night and day.
It stole the Oak Tree's leaves away.
Then snapped its boughs and pulled its bark,
Until the Oak was tired and stark.

But still the Oak tree held its ground
While other trees fell all around...
The weary wind gave up and spoke,
"How can you still be standing Oak?"

The Oak tree said, I know that you
can break each branch of mine in two,
carry every leaf away,
shake my limbs and make me sway.

But i have roots stretched in the earth,
growing stronger since my birth.
You'll never touch them, for you see
they are the deepest part of me.

Until today, I wasn't sure
of just how much I could endure.
But now I've found with thanks to you,
I'm stronger than I ever knew.

 We have been so encouraged by so many that  have encouraged us and built us up- thanks!  We are getting so many scriptures and songs, and are so blessed that the Lord is using you to encourage us and lift us up.

Sunday, June 12, 2011

I want the JOY of the Lord to come down


We were so blessed to have so many visitors this week.  After moving to the Seashore house for rehab, we have been kept so busy with 5-6hours of rehab for Calli each day.  Some of her friends came and spent some time with her, and one even made her a delicious birthday cake- thanks MAGGIE! 
I was so surprised to see my best friend from junior high school, walk through the door.  Differnt family embers all came at the same time on the same day,a nd it was not planned!
When Chris Landes from I.T. Landes & Son, (Mike's boss) came in with his wife, I teared up.  It was a special visit, and he blessed me so much when he honored Mike with his words.  Mike is not just a hard worker at home, or here by Calli's side...but he is a strong, steady and diligent laborer at work. 

Last night, we were especially blessed  when my cousins came with their special fiancees to visit us.  They are both teachers, and Sandy had her class make Calli wonderful cards!  They were so special and all have special writings, poems or encouraging notes on them!  Thanks to Miss. Nulf's class!  You guys made us laugh, cry and smile!  Laura, who is an art teacher, made us some beautiful pieces of pottery.  I have always loved handmade gifts. 

So, Calli has been super busy walking!!!  She is getting stronger and stronger each day!  Her PT has a nickname for her, "The perfectionist."  ha ha- lol- YES, that is Calli!  She will not keep going on in a lazy way, she will perfect each movement she is asked to do...Over and over again, these simple moves, that we can do no problem, she must work and retrain her brain to do!  She is moving so quickly.    In OT, she played the piano for the first time, and was very happy to do so!  Music is therapy to her, she needs to have her fingers moving......

We got a day pass yesterday and were able to bring her home for just a few hours.  We wanted to just "BE."  Do you know what that means?  Just come home, be surrounded by familiar smells, noises and "BE."  The 3 hours that we were home flew so quickly by.   After we got Calli in the house, she went right over to her cat, who was starving for her love. Then after we got her settled in a chair, we let the dogs loose- WHOAH!  They clobbered her and then me and then her again...  They would not leave her side, even when I took her into the bathroom, all three dogs had to squeeze in there with us....they needed her, she needed them.   I am realizing, that we need to make some  adjustments ...add a few extra hand rails for support till she is stronger.  One of the first things that she wanted to do was play the piano, she wanted me to post this song, it is a source of calm and peace for her...she thought you all would enjoy it as well....

So amidst the peace that we have here, there are some that the Lord has allowed in our lives, to gnash their teeth at us, betray us, call names and upset the peace the Lord has given us.  While it is hurtful, and we do not understand is being used to refine us. 

I do not always respond as I should.  It is best to do and say nothing....but I do not always do that.  To not answer a fool according to their folly is hard.  I am in this position, and it is hard to always have self-control at all times, and answer the foolishness with grace and mercy.  

So a little disclaimer here...if you have called me, and in the midst of our conversations, I have to go quickly and have hung up on you , please do not be offended or take it personally.  IT does not mean that I do not want to talk, or you are not important, it means that I have to go and do my job- being a mom, advocating for the best for Calli must come first.  We are super busy, and when a doctor, nurse, pt, ot, resident, fellow or other person walks in the room, I have to go...If you begin to talk about things that I cannot focus on right now, or try to exert your right to an opinion about our child and her care....I might not react like I should, I may yell at you or tell you to shut-up- no it is not Christ-like...I am flesh, human, trying to"BE STILL," in this storm of ours, and when extra unnecessary drama comes sweeping in, I am going to do all I can to get it out. 

I want the JOY of the LORD to surround us, but there is always naysayers, controllers, manipulators and teeth gnashers.  In the midst of our warfare...God has allowed even more difficulty to refine us,and purify let the dross fall away, brother against brother.  But blessed are the peacemakers.  So, to make peace, we might walk away from you as Jesus did....his family gnashed at him, did not believe him, shouted "Crucify," in his hardest hour, in His hour of need....they rejected Him, took it personally, and betrayed Him.  So my prayer will be his-"Father, forgive them...they don't know what they are doing."  how it is effecting our precious daughter.......

I want to focus on today, not yesterday, not tomorrow....I want to JOY in the everyday things like rainbows and butterflies, sunshine and a song on the piano...Calli walking, washing herself....this is my focus right now, so forgive me please if I cannot handle the extra unnecessary problems.  It has all washed away out of my mind, the past, the focus of yesterday is gone. 

Through these tears and sorrow Lord, all I want to hear is your voice, I want to see your glory, your beauty in the everyday little things, and joys that you are bringing to us.  Give me the strength to be betrayed and not reply in my flesh.  Father, defend me and maintain the words you have spoken over our they spit upon us and try to crush our spirits with their words of poison...bless them Lord, fill their hearts with peace, and joy and trust...

Today I want to focus on our precious daughter Calli, it is her birthday, and I am so thankful for her life, her vibrancy.  She gets so excited about the little things in life...from a Scottish cathedral, to a butterfly to an apple with peanut-butter. Today we are going to have a party for her, the hospital has graciously let us use one of their rooms here on the rehab floor. 

I hope your day is filled with peace, love, hope and forgiveness.  Please watch your words.  Be slow to speak, bless those that curse you.

Thursday, June 9, 2011

Where you go I go...

I am SO sorry I have not been writing, we have been so busy and moving so many times (5 times!) so, I am exhausted by the end of the day....  

We moved from Oncology to the Seashore Rehab house- which is attached to the hospital.  The day that we moved, and were packing our things (for the 3rd time), a wonderful musicianary (music missionary) came in and played songs of hope & worship while we packed.  His name was Woody.  There was such a sense of calm & peacefulness to the music, and Calli smiled so much.  He gave us Cd's for Aidan, and talked about a hope house in the Ukraine that he helps out with.  Calli said it would be neat to visit it someday. 

Before we left Oncology, Elmo & Cookie Monster came in, and Calli was a good sport.  They let her pick out a gift, and she picked out one for her brother- it is called farting noise putty.  lol.

Calli was praying for a single room so that both mike and I can stay with her, as is her wish...but...they do not have singles and there is a super long waiting list to get into here, so we got put in a teeny tiny room, with no light, or window, & room for only one of us.  BUT....our God is an awesome God!  An unheard of thing happened...they let us both stay :)  We were so thankful, and squeezed in the room.  The next morning, they were so gracious and moved us to a bigger room, with a beautiful bright sun-shiny window!  There is plenty of room for Calli's wheelchair, walker, etc...and US!  Her roommate, is a precious child...who was a foster child and adopted!  She is having a rough time, being a teen, and trying to find her identity.  They are a Jewish family, and I was blessed to have a heart to heart with her mother this morning.  She needed encouragement, and when I don't think that I have any to give, the Lord just fills me with compassion, and understanding for this child's situation.  God is good.

So we are here for intensive and tiring rehab to get Calli walking.  On Tuesday, they made a brace for her left leg....and today she does not need it anymore!  Really????  WOW- she graduated out of that in record time!  She got a walker on Wednesday, and today she was taking steps on her own...we are fully expecting her to be on her own by the end of the week. 

They made this whole plan for her rehab, but she is reaching their goals, way faster than they have time to put them in the computer, print them out and give and review with the docs the next day!  She is awesome, spunky, determined and wants to DO THIS IN HER OWN!!!  We actually had to have the nurse scold her (she would not listen to us ....) The other night, she had to go to the bathroom, and she got up and walked to her walker. Really Calli?  Rules are rules, gotta get on your sneakers, call us, we have to put on your safety gait belt and then hand you the walker,while holding on to you so you can walk to the bathroom.  She just skipped a few steps, and took her own.  I would rather her be this way, than any other....

So not sure how long we will be here, but we are here together.  We are so thankful for the families that have volunteered and are making us lunches each day.  Calli is so sick of the hospital fare.  She is eating well, and each day improves way beyond their expectations.  The feeling in her leg is increasing more and more each day!   They are expecting that we be released to go home on the 17th.

So here is the nitty gritty on  what is to come....Sometime in the next few days, Calli will be getting her first tattoos and a mold made for radiation at University of Pennsylvania.  She will be starting radiation and Chemotherapy on Monday the 20th.  She will be taking a pill form of Chemo, so no long hours on infusion.  She will be getting radiation 5 days a week, here at HUP, for 6 weeks, chemo for much longer.  The stinky thing is that she will lose her hair...but not from chemo- from the radiation.  They have decided, that while there are no tumors in her brain or neck, they will radiate as a precaution....  She decided that she wants a cute short hair cut this week...and donate it to locks of love :)

So we have thought of fun things that we have always wanted to do together, but just have not gotten to is a list we made of things that we have never done in Philly:
Penn's Museum of Archeology and Anthropology (her #1), Art Museum, Franklin Institute,  see a Phillie's game, Battleship New Jersey (actually see the inside), Edgar Allan Poe site, the Shoe Museum, Eastern State Penitentiary, Museum of natural History, Franklin mint, Franklin Mint, and of course the Constitution Center, Liberty Bell and  Independence Hall....

Nothing will ever be the same...this is so true.  We are changing every day, our attitudes, our boldness in who we are- what we stand for...courage is rising in us that we never even knew we had.  Compassion for others in similar or very different situations is multiplying in our hearts...we have been comforted ourselves by God's own hands.  Emotions are rising, and falling, and we are examining our hearts and flesh daily.  At times, we must say to our souls to "BE STILL."  It is really easy to shift our focus...especially after a doctor's report, a meeting with an oncologist or we must take those things, those reports, those moments of fear and not ignore them...but examine them, and test them and see if they are true.  God's words promises that He will never leave us or forsake us...

As I am writing this, musicians just came in and sang a song they made up....."with my own two hands...I will comfort you, with my own two hands..."  God is sending people, strangers to us to comfort us, encourage us and give us hope. 

Last night, I was doing laundry all by myself in a part of the hospital that was far from my family.  I was all alone in this family center...and by myself and in that moment, I cried.  i wept, and just talked to God.  In the stillness and quiet, is when things come...words from God, or the birthing of my own emotions and feelings and thoughts i the flesh.  

My cousin, who I rarely see or even know that well told me to call him at any time, so I did at- 12:30 am.  He encouraged me so much, and just confirmed words the Lord has been speaking to us through His Holy Word, cards, and prayer.  It still amazes me how God uses His people to confirm, establish and strengthen be BOLD, step out- if you feel a nudging, and little butterfly in your belly..telling you to speak, encourage give a hug or a call to a stranger  or a friend...step out- it may be just what they need.   

Life is Hard, but God is good - all of the time.

This is an excerpt from The Daily Bread on June 7- it spoke so much to me <3

When Polycarp (AD 69-155), who was a bishop of the church at Smyrna, was asked by a Roman authority to curse Christ and he would be released.  Polycarp said, "Eighty-six years I have served Him, and he never did me any wrong.  How can i blaspheme my King, who saved me?"  The Roman officer threatened, "If you do not change your mind, I will have you consumed by fire."  Polucarp remained un-daunted.  because he would not curse Christ, he was burned at the stake.
Centuries earlier, when three young men named Shadrach, Meshach and Abed-nego faced a similar situation, they answered, "O Nebuchadnezzar, our God who we serve, is able to deliver us from the burning fiery furnace, and He will deliver us from your hand, o King.  But if not, let it be know to you, O King, that we do not serve your gods..." (Dan. 3:16-18)
A Similar experience......but two very different outcomes.  Polycarp was burned alive...but Shadrach, Meshach and Abed-nego left the fire completely unsinged.
Two different results, but the same display of faith.  These men showed us that faith in God, is not simply faith in what God CAN do....but it is the belief that GOd is God, whether He delivers us or not.  He has the final say.  It is our decision to choose to follow Him and worship Him through it all.

A verse that touched me this week, and I posted on Calli's door for all to see -Joshua 1:19
"Have I not commanded you?  BE strong and courageous!  Do not be afraid or discouraged, for the Lord, YOUR GOD, is with you, wherever you go.

Wednesday, June 8, 2011


 This is one of my favorite songs by Jason Upton...actually the whole CD is amazing!  The song is called trusting the angels.  When I was younger and had trouble falling asleep I would listen to this CD over and over again......there is just something comforting about all the songs. ENJOY :D!!!!!

 I’m just a bird with a melody to sing
I’m hardly heard look at these tiny little wings
But I can see an arrow flying and I’m not afraid
I can hear the terror try to steal the night away
And I’m not afraid I’m not afraid

I am hiding here in your shadow

Riding under your wings
And I am flying trusting the angels
And living in your covering
And I’m not afraid, I’m not afraid

I’m just a bird without a penny to my name

It may sound absurd I’ve got no plans beyond today
But I can see an arrow flying and I’m not afraid
I can hear the terror try to steal the night away
But I’m not afraid, I am not afraid

I am hiding here in your shadow

And riding under your wings
And I am flying trusting the angels
And living in your covering
I am hiding here in your shadow
And riding under your wings
And I am flying trusting the angels
And living in your covering
And I'm not afraid, I'm not afraid

Tuesday, June 7, 2011

Praying HARD for a single room

Praying for a single room at the sea-shore house =)
Moving right now. Quick prayers!!!!
Would love for both mom & dad to be able to stay with me...unfortunatly when you share a room only one parent can stay.
Please lord, give me a single room :D

By the way this Calli ;)

cry till we laugh and laugh till we cry

Today was a wonderful day.  We smiled, we laughed, we cried, we laughed till we cried, we cried till we laughed. 

We started the morning with a goal- get Calli into a real shower!  Mike and I figured it out on our own, and did it!  Calli did most the work, we just supported her.  What a blessing to be able to get a shower!  To stand...not to mention, this morning Calli stood alone for a few seconds...yes she did!  We are so proud of her, she is so determined and focused.  I was scrubbing her left foot, and she said "Owwy! ow Mom, not so hard-that hurts!"  I started jumping up and down and hooting and hollering and praising the Lord- because SHE COULD FEEL THE BOTTOM OF HER FOOT!!!  THE SAME FOOT that three neurosurgeons told us that she would never be able to feel again!  God is good- ALL of the TIME!!!

Today she is so much stronger than yesterday!  Each day, she gains leaps and bounds! 

So, when Calli came out of Surgeryonwednesday, one of the first things that she asked was, "Mom, am I going to be able to ring my bells, I can't ring sitting in a wheel chair."  You see, Calli rings in a traveling bell choir. They are all wonderful, intelligent and compassionate homeschoolers.  She considers them a part of her family.  It is widely known, that if one ringer is missing...the whole song is thrown off, as each ringer is assigned two or even 4 notes to ring. 

Today, the bell choir showed up and rang a surprise concert for Calli.  I tried to get them permission to ring in the main Atrium, or the family library, but we were put in a small conference room right in the middle of the Oncology floor!  After each ringer, parent & director was screened for illness, I went and got Calli, who had NO IDEA!  We rolled her down the hall, and you could hear the majestic sound of ringing bronze.....she was so surprised to see them all there. As they played, smiles and laughter  graced her face.   :) 

Parents, doctors, patients and nurses, could hear the beautiful worship songs "Worthy of my Praise," & "Mighty to Save,"  through the halls.  One by one they would come to listen in the hallway.  Several patient's parents were crying, I had three nurses tell me that they got chills, listening to them play.  God put us where He wanted us.  He wanted them to play in the middle of these halls of depression, over these halls of doubt, over these halls of fear and death- and bring LIFE, WORSHIP, BLESSINGS, and PEACE.  Blessings and Life were rung over each child, parent, sibling, nurse and doctor today.....

They got to visit just for a short while, but left such an imprint on Calli, me and others....As i walked them all downstairs and went outside, I realized, it had been the first time that I was outside since the morning of her surgery.  I was so thankful to hear the birds chirp, see the breeze blow in the trees, and feel the sunshine on my face. 

After they had all gone, we went back to the room and spent some wonderful time with all the Homan children, their mom, and grandmother and Aidan!  So, we had a total of 11 children and 4 adults in her room today and had a BLAST! 

We were so blessed to be able to see Aidan today :)  I cried and cried when he left.  I miss him so much, and I can see the worry on his brow, in his eyes....he loves his "Sissy."  He let me kiss him a hundred thousand times on his face, cheek, lips, and make up for the last 3 days of not seeing him.  We are all looking forward to the time when the 4 of us, can all be together again. 

After they left, we had a visit from Calli's radiologist from Hospital of University of Pennsylvania.  Calli will have to heal for several weeks, before she can get any radiation. She may be able to get proton radiation, which is more precise and protects other vital parts of her body.

We had another wonderful surprise visit from some of Mike's friend's, and were encouraged and uplifted.

I felt carried all day...I mean really like on a cloud of JOY.  It is really quite strange how light I felt today.

Someone precious and beloved by God, who went through a tradgedy of losing her child two years ago emailed Mike and me today and said this:

"While my trial is different than yours, I still understand your pain, your desire to do something...but knowing there is nothing you can do. God has placed you where you are, He has a purpose for this, He knows and sees the big picture, I can see that God is holding you up, He is holding up Calli, He will not let her go.  The prayers of God's people have carried me thus far....I used to feel so bad that everyone else was praying so hard, and here I was needing God the most and could not pray.  A friend told me that it is like the paralyzed man who could not get to Jesus, but he believed in him, and needed his friends to carry him to Jesus to be healed.  They lowered him through the roof!  At that time, I was too paralyzed to get to Jesus, I needed to allow my friends to carry me to Him and lay me before Jesus.  You must continue to do the same."

This went right to the core of me today.  The thing is.... in order to be carried, we must surrender, lay down, rest & be still.  While there is "bad" reports, sadness, death and tragedy all around us...we are at peace on the inside... we are still, quiet, full of contentment and JOY.  Today I know the JOY that I felt, the weightlessness that I felt, was Jesus.  I know we were carried by our friends, strangers, & families prayers,...we are getting notes from people all over the world praying....YOU are carrying us to the feet of Jesus.  Thank you <3  

Each day Calli is growing stronger and stronger...Mike is such a support for both of us.  He reminds me to drink my water, refills it and makes me drink.  He is constantly making Calli drink, and do her exercises.   He holds Calli up and is her support when she they walk.  She trusts in him so much.  There is no fear of being hurt or turned the wrong way or pulled the wrong way, when she is in his arms.  She trusts in her daddy so much.  I believe that this is part of the reason she trusts in her heavenly Daddy so much too...God has given her a loving earthly father, as an example to hold her, comfort her and support her like no one can.  I cannot help but look back to 13 years ago, when this child of ours, our beloved gift was learning to walk...she would get so excited when Mike got home from work and would pull herself up and try to get over to him.....and walk. I am seeing the same little girl, now a young woman, working so hard to show her Daddy, that she can do it, that she wants to walk to Him, with Him.

I am so thankful about the open relationship that Mike and I have with our children.  We are laughing so much right now.  It is pure silliness, if you think about it.  Mike is shooshing us at night, because we are laughing so loud...and then he starts laughing and we just can't stop.  I mean, we are laughing at every single little thing...the simple things in life that are funny.   

2 Corinthians 1:3-4
"Blessed be the God and Father of our Lord, Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction... with the same comfort with which we ourselves are comforted by God."

Thank you for carrying us to the feet of Jesus.

Sunday, June 5, 2011

Our Chrysalis

I am sorry for not writing to update you all.  I have been so busy caring for Calli 's needs, and we have been waiting for pathology.  We are so thankful for the healthy meals, card and encouragement. 

We were told on Thursday evening, after a post-op MRI of her spine, that they had found more tumors, small ones, but not so great to hear.  Calli is doing better though post-op.  During surgery she lost sensory nerves in her left she can move and wiggle toes, and "walk" but cannot feel herself doing so.  However, each day has been so much more improvement from the last.  Today, she could feel me washing her legs, and she even walked with help from Dad and PT across the floor twice!  I must say that, it is pure Joy for me to be taking care of my daughter. 

So, last night Calli had a brain MRI, to see if there were any tumors in there, and this morning, we got a wonderful report and rejoiced that it is clear! The doctor came in last night with a social worker, and pulled Mike & me out of the room....She told us that Calli has Stage 4 Terminal Cancer. The specific name is:
Glioblastoma Multiform, it presents in more than just tumor form and they said that it has spread the entire length of her spine.  The doctor literally told us that it would "Take a miracle of God, for her to live."

God's report is different though- and I will chose to believe the report of the Lord that says the effectual fervent prayers of the righteous avail much.  Calli had a dream before surgery, and she saw a lit candle in an old brass candle holder, in the middle of the woods ...a friend came over, picked up the candle and said "It is to be heard and not seen."

So, here we are praying, and thanking God for this is to be heard and not seen.  What is Lord?  What?  Then I began to think about as small as a mustard seed can move a mountain.  Do I really believe that?  Lord, do I?  In my heart I do, in my spirit I do, but my flesh, my thinking, my head, my words get in the way. My words are heard......... I believe the 2 Chronicles 7:14, that says, "Then if my people who are called by my name will humble themselves and pray and seek my face and turn from their wicked ways, I will hear from heaven and will forgive their sins and heal their land."

It is not about us being holy enough, or good enough, or deserving is about humility, and faith.  It is about me admitting like the guy in the bible.."Yes I believe, but Lord, help my unbelief."  I believe that we, rather every single one of you reading this, whether you believe in God, or know God...I believe that a prayer offered in faith, in humily to God...can move mountains, can fully heal my daughter Calli.  I believe that the words heard from your mouth, spoken over her can heal her.  Life and death are in the power of the tongue.

Do you really pray for people when you say you will?  I know that there have been so many times, that I myself, have tried to comfort someone and said "I'll be praying for you,"  and I did not.  I did not fast, I did not take 5 minutes and get on my knees, and humble myself physically, emotionally, mentally and spiritually and ask God to forgive me, and ask Him to help, guide, provide or heal someone else.  It is an act of humility, being prostrate before God, bent low before Him...asking God, whom maybe we think is not listening.... or isn't even there...or even cares. 

Did you ever see how small a mustard seed is? Did you ever see a mustard plant?  The seed is tiny, minuscule...but the plant is huge that comes from that small seed.  Do you have a seed in your heart today?  Can you humble yourself, for 5 minutes, get on your knees or lay on your belly physically humbling yourself....confess your unbelief to God, confess your heart to Him, cry out to Him, and then ask God to heal my daughter.  Do you have a mustard seed today?  If not, ask God to increase your faith, admit that you don't have any to Him, ask for a bigger portion....He will give- If you ask.

Wait on the LORD, can you do this today?  Can you take 5 minutes and challenge your flesh.....for a precious innocent child of God, that wants to live?  Can you believe with me today for total healing?  Can you see past the doctor's report and believe the best WITH me today?  Can you speak life and not death over our child?  Can you speak blessings and not cursing over her body? IT will be heard and not seen.  Her healing will be heard and not seen, it will come from your lips.

I humble and fervently am asking you to take 5 minutes, and go beyond your comfort zone, beyond your own faith,and ask God for His, ask God to forgive your unbelief in healing, and pray for Calli to be wholly healed.  A miracle of God, can happen from your lips, from your heart, IF you humble yourself, and confess and pray...only Believe!!!

I want to leave you with the verse that Calli asked me to share with you.  The same friend, who was in her dream, made a card for her today, and it had the following verse on it:
Isaiah 40:30-31
But they who wait on the LORD
      Shall renew their strength;
      They shall mount up with wings like eagles,
      They shall run and not be weary,
      They shall walk and not faint. 40:30-31

With much love,


Friday, June 3, 2011

Going to get a brain MRI!
Had a wonderful visit from my grandmother,brother, cousins, uncle & aunt!

From calli

I moved from the bed to a rocking chair today! It was a little scary knowing my feet were touching the floor, but could not feel the floor :)
Today I brushed my own teeth and could feed myself. I guess when you can do every-day things all the time you never think about what it would be like not to be able to walk, sit up, roll over,or even your own chap-stick on.
Oh the simple things of life we take for granted
Thanks everyone for all of the support and prayer.

Wednesday, June 1, 2011


Calli went in to surgery at 8 am, and came out at 2:30.  They warned us that she would be on a vent, not able to move her legs, and said to brace ourselves, because she would not be recognizable, due to swelling in her head.

Well, we are so happy to report that she is breathing on her own, wiggling her toes, moving her legs and as you can see, looks good.  Several of the 7 or so different doctors that have come in,  are telling us how astonished they are at how good she looks, how she is not swollen at all, and how well she is moving for the surgery she had. 

She is in a lot of pain, and had much trouble with breathing earlier, but now,  they have her pain managed at a reasonable level.

OK, here is the actual surgery info:  The tumor is an Astrocytoma- the kind we did not want it to be...Dr. Storm got what he could out.  This tumor does not have a definite outline, and grows differently in different hard to get all.   The doctor was able to put back in one piece the lamina that he had removed.  He removed 1/2 of t8, all of t9,t10,t11, & 1/2 of t12.  She has been referred to a Neurological  Oncologist, to treat the rest of the tumor left in.  Tomorrow she will get another MRI, to see the amount that had to be left in-We are hopeful for another shrinking!!!  

She will need radiation.  Depending on the grade of the tumor- possible chemotherapy as well.  Lab results will not be back for several days, but they treat any astrocytoma tumor of the spinal cord or brain as a malignant type, even if it is not. 

Calli woke up from resting and said, "Mom I had a dream, and a close friend told me in the dream .."Calli, Clay has to go in the kiln, before it can get shiny."  

She also had another dream with another friend in it that told her " It is not the face of a man, but the feet."  

I know that both have meaning, that the Lord wants to reveal to us all.  

Calli also asked us to share the following verses with you from Lamentations 3: 21-33 that Mike had read to her, she had it already highlighted in her bible, and had chosen the beginning of this section to read in her drama class earlier in the year:

"Yet I still dare to hope when I remember this:  the faithful love of the Lord endures forever, His mercies never cease.  Great is they faithfulness; His mercies begin afresh every morning.  I say to myself, "The Lord is my inheritance; therefore I will hope in Him!"  The Lord is good to those who depend on Him, to those who search for Him.  So it is good to wait quietly for salvation from the Lord.  And it is good for people to submit at an early age to the yoke of His discipline.  Let them sit alone in silence beneath the Lord's demands.  let them lie face down in the dust, for there may be hope at last.  Let them turn the other cheek to those who strike them and accept the insults of their enemies.  For no one is abandoned by the Lord forever.  Though He brings grief, he also shows compassion because of the greatness of His unfailing love.  For He does not enjoy hurting people or causing them sorrow."
 We give God all the glory, for her good condition.  We are so thankful for all of your continued prayers, & support.  Rejoice in the Lord always!  Again, I say rejoice!