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.


  1. WOW! What amazing progress! So proud of you all in how you are embracing this all so boldly.

    Tell Calli that I hear from everyone that they love their post chemo hair even better than their original hair - especially kids and teens! She's so beautiful, so hair or not, she'll still turn heads!

    Praying continually for you guys!

  2. Thank you for the update on Calli. Glad she is feeling strong through it all. Wish you guys were not going through all of this. Awesome how the room thing worked out. God's got His hand on you! Your testimony of how people are touching you and how you are blessing others through your trial is amazing. You are correct that things will never be the same again. If you ever took each other for granted and the beautiful gift of family for a milli-second in the past (and I know 'cause I am guilty as charged), that's all forever changed. We were at HUP last December for Matt's surgery because he had some suspicious cells. He received really good care there. Praise the Lord that Matt is healed, and we are praying for the healing power of Jesus upon Calli. We will continue to pray for all of you. When you are ready to go on all of those wonderful field trips, we will join you. When traveling back and forth to HUP, I kept seeing that museum of archeology and anthropology thinking I've got to get in there. Let us know! <3

  3. Hey Derstines! Has anyone told you lately that you are amazing ??? We are privileged to pray for you and have asked so many to do the same. How generous of Calli to be thinking of others through locks of love! We think about her all the time and when we do, we take a breath and say a prayer! May the peace of Christ be with you!

  4. i just wanted to let you know that although i do not know you all, you are in my prayers. i found your blog because i am a friend of woody's on facebook and he posted the link. he truly is a special person with a wonderful gift. i look forward to seeing him next week as i go to volunteer for camp kemo, a program of the children's hospital at richland memorial in columbia, south carolina.

    your faith and love will move mountains, and i will be with you in prayer for the duration of your journey. :)

  5. Lucy, your scripture "lesson" and the 2 outcomes is so awesome and true. I am so grateful to have all of you in my life. As they say, Keep on keepin' on! God is building spiritual muscles in you all every single day! Because of that, you are uplifting all the world (well, nearly 10,000 anyway). :) Smile God loves you all.

  6. Love 'ya Calli! I'm praying hard :)
    A little birdy told me your birthday was coming soon!!!! I hope to be able to send you a card! (I like sending cards :))
    Love and love again,

  7. Love your Philly list -- we have enjoyed many of those and are sure you will too. Something else we enjoyed greatly and is right there by the Constitution Center/Independence Hall, etc., was the Ben Franklin museum (it's underground, beneath where his house used to stand), the printing press (same courtyard), and Elfreth's Alley (just a few blocks over). Can't wait to hear each of your exploits -- so much fun! ENJOY!

  8. Dear Ordinary Oddballs,
    I don't believe we've ever met. I grew up in the Harleysville area and I'm now living in Virginia. I found your blog through some mutual friends on facebook. I just wanted to take a minute and let you know that your story has reminded me how important family is and every time I give my 1 1/2 year old son a kiss I stop and say a prayer for Calli and your family. I pray the Lord swaddles you in his everlasting arms as he comforts and heals you. Blessings Calli, you are a BRAVE child of God!


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