Thursday, August 4, 2011

MY BELL RINGER!



Forgive me if I write a book.  It has been some time since I have written...my brain, heart and  emotions are winding down, and winding up and down again.  It is kind of a roller coaster- which I happen to love roller coasters, so I am trying, really trying to find joy and rejoice in each and every moment we are having!

So Calli had her very last day of radiation, and it was a joyous day!  Mike was able to get off work, to join us in celebrating and supporting her on her last day.  The nurses, and radiation techs were so supportive and loving through this whole time.  They all smiled graciously as I snapped their pics, some were not happy with just a pic, but grabbed Calli in a huge embrace, crying themselves, at her reaching the end of this weird sort of day camp with them :)  That is right, we sort of thought of it as our summer day camp, lol!    We spent 5 days a week, for 7 weeks of our lives with them all, it was so very hard and so very easy to say goodbye.
Our daily routine...parking, then up the elevators
So our typical day at "camp" consisted of getting up, showering, eating breakfast, listening to KYW news, then driving to Philly in lots of lovely traffic.
We would park daily at University of Pennsylvania's Perleman Center, aka Abramson Cancer Center, aka Robert's Proton Therapy Center.

Each day a really nice parking guy would save us a spot (they don't ever do that), he felt bad for Calli, and all my stuff!  We always needed  her walker, wheelchair, an extra person to help (or two), the lunch bag, my HUGE bag of stuff (Mike calls it my diaper bag), and Calli's bag.  OYE!  Lots of stuff.

After parking, we waited for the elevator- some days that was 10 minutes, some days it was 30!!!  After one very hard and very sick day, someone showed us a secret elevator, that we never had to wait for!  So up the elevator to the CN, concourse level, and be greeted by these two lovely ladies.  They were always smiling, and knew Calli by name.   They supplied me with endless encouragement with their joyous smiles, gave me endless supplies of water bottles and kept me abreast of the machine delays.   They cheered and cried when she rang her bell the last day.


Ali gave Calli a certificate for completing radiation and for being a super awesome kid!

 This is Ali.  She is a child-life worker at CHOP and PENN.  She is the one who was with Calli from the beginning helping make her comfortable, and understand the whole radiation dealio.  She was also there each day to greet us, and help us, hug me when I was having a really bad freak-out day....provide Calli with lots of resources for a teenage girl dealing with hair loss, self-esteem etc...  She is an all around super supportive and kind person.


This is the CHOP waiting room at PENN's Perleman Center.  Very kid, teen and mom friendly!




getting weighed....
 After waiting, she would be called back and get changed.  One day a week, we saw Dr. Lustig and all of his fellows, and or residents.  She got weighed, vitals done, skin checks and general check-ups.  They are on top of everything!





 All of the techs, nurses, and receptionists were so nice, and accommodating to Calli (and me!).  We needed a bigger room to change in, and they allowed us to change in their clinic.  They were all supportive and even tried out my special home-made cream.  They all thought that I should market it and label it Calli's Cream.  Ha ha lol.    We appreciate them all, and wish we had gotten pics of all of them, but some were off on well- deserved vacations.
Dr. Lustig (with id tag) and some of her many Radiation Oncologists.



After meeting with the nurses, and doctors, she would get changed and a radiation tech would come and get her.  One of her favs was Dexter!  He is ALWAYS singing, smiling and cheerful!

Katie had to hug Calli :)
Matt-
Dexter, Tom, Matt, Giovanna and Katie were a constant with Calli.  They were her camp counselors, so to speak.  They would comfort her, get her situated, and walk her thru the treatments.
Giovanna always wore LEGO earrings!
Tom <3

They were constantly in and out of the LINAC treatment room... positioning her, telling her what was next, talking her through it.  They were able to talk to her through a two-way  intercom.






She brought her Ipod, and it played in her room on a sound dock.  No headphone allowed, so she always asked them to blast the music loud.  You not only could hear the music blasting through the heavy lead doors, but through the two-way intercom, which had to always be ON.  IT was great- the music streamed all the way down the halls.   I could hear her music from far away.  For some reason, I never heard anyone else's music.  So, they got to hear worship each day!  They could not believe that the music was Christian- it was too cool!  Even in this small way, Calli was witnessing to them all.  The worship music was reverberating and flowing through  the halls for at least an hour some days, two hours once a week and minutes in the last week- how wonderful!

This is a LINAC- the big arm would swing around and beneath her body.  The table would rise above their heads- she was 8 ft in the air for her brain treatments.  For her spine, the big arm would swing to each side in increments and give her the dose of radiation.
This is her mask, that she had to wear each day.  It was fitted to her face on the first day.  Wow, I remember when that was a really hard day to get through.  it seems so small now.
Getting bolted down



After getting zapped each day, she would get changed, and I would lather her up with cream.  Then, we would go back up the elevators to the ground floor.  One day a week (or more if she was ill), we would cross the street to CHOP, go across the hospital, up another elevator, across a bridge to the Wood Center, up another elevator to see her Oncologist.  There she would get weighed, vitals done, and chats with her wonderful Oncologist Dr. Belasco.  Then she would meet with her social worker.  Then back down the elevator to get blood work done and a breathing treatment!  THEN we had to wait for her blood work to come back in, so sometimes we went back up the elevator to see her doctor again, or a nurse would come and give us the green light to go!  If she was really tired or sick, we could wait in the day hospital and rest while we waited.  After our green light, we went back down the elevator to the bridge- crossed into the main hospital, went down another elevator, crossed the hospital, crossed the street and back to the Perleman Center to validate our parking ticket!  Back down another elevator and out to 76 :)
lots of elevators!!!!!

Usually our drive home was at least an hour, sometimes two.  God spared us from MANY accidents that were right in front of us, next to us or behind us.  Seriously people, get off of your phones, stop texting, stay in your lane, go the speed limit and you WILL get to your destination!

I put this magnet on my car!

AND this one too...because it does!

When we finally arrived home, we were all ready for a nap!  WE ARE ALL so thankful for the meals that were prepared and given to us 4 days a week by our friends, family, strangers and the local churches.  It was such a relief to not have to think about making dinner after these days.

ALL DONE!  Carrying her mask to bring home for show and tell.


So this was her last day!  She came out relieved, happy and ready to ring the BIG BELL!  She rang it six times, one for each full week of radiation!

RING IT CALLI!!!


video



Hey everyone,

This is Calli, I wanted to post this song for you all to hear.  I especially love the verse  that says, "Why did I wait to live till it was time to die?  If I could have the time back, how I'd live...life is such a gift."

It is so true how you don't realize each day, how much the little things in life really matter...like if I were to die... I would just wish I could go back and not take for granted the simple everyday things like going to the trail with my mom and dogs and brother like we used to, and be able to hike with my dad, being able to run, and climb a tree- these are things I wish that I could do right now....I have regrets too, ya know, like I would have not fought so much with my foster brothers and sisters now that I can never see them again...or with my brother Aidan.  I would have not held stupid grudges against my friends, or family or my mom...it is just time wasted that I could have spent letting someone know how much I really do love them.  Even for people who do not have cancer, you just never know when you are going to lose someone, so like the song says, forgive, never give up, the days we are given are gifts...don't waste them.

Love,

Calli



"WE LIVE"
BY SUPERCHICK
There's a cross on the side of the road
Where a mother lost her son
How could she know that the morning he left
Would be the last time she'd trade with him for a little more time
(so she could say she loved him one last time)
And hold him tight
But with life we never know when we're coming up to the end of the road
So what do we do then
With tragedy around the bend

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

There's a man who waits for the tests to
See if the cancer had spread yet
And now he asks why did I wait to live 'til it was time to die
If I could have the time back, how I'd live
Life is such a gift
So how does the story end?
Well, this is your story and it all depends
So don't let it become true
Get out and do what we were meant to do

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

Waking up to another dark morning
People are mourning
The weather in life outside is storming
But what would it take for the clouds to break
For us to realize each day
Is a gift somehow, someway
And get our heads up out of this darkness
And spark this new mindset and start on with life cuz it ain't gone yet
And tragedy's a reminder to take off the blinders and wake up
(to live the life)
We're supposed to take up
(moving forward)
With all our heads up
Cuz life is worth living

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

8 comments:

  1. Wow! This post is so inspiring and beautiful.
    Thank you Calli for sharing your journey - not yet completed !!:) Your words, poems, pictures and heart for all of us to see.
    And thanks Lucy for documenting and sharing from a mothers perspective :)
    You both have taught us to rejoice in the Lord always, and again I say, Rejoice!!

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  2. Love you Derstine Family! We are continuing to pray for y'all and are planning to rejoice with you as well. Smooches to Lucy and hugs to Calli! God is so awesome!

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  3. Calli, thank you so much for sharing your thoughts and words in a beautiful song. I think of you and pray for you every day!! You are such an inspiration to me and so many of my friends that have been reading your Mom's blogs!! I love you so very, very much sweetie!! I'd love to come visit you soon!!! Love, Aunt Terri

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  4. I am so happy you are all done Calli! So, so happy! Praising Jesus you could ring the bell : ) I love all of the people that worked with you. They had the best smiles. Thank God this horrible summer camp is all over for now!

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  5. Yay Calli! Congrats a thousand fold! You look so beautiful and strong. Hope you and your family are having a great time celebrating...or catching up on sleep, either one :) Keep up the good work girl!

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  6. Thanks you Calli and the Derstine family for suffering for HIS glory, for being a faithful testimony to a living GOD! We continue to pray for you!

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  7. What another beautiful and moving post.Lucy, you have a wonderful way of inspiring others about faith and God even when you are struggling yourself what an unbelievable testimony. You are being a wonderful mother and wife and your priorities and focus is exactly where God calls you to be right now. And Callie, I only had the privelege of meeting you one time but what an amazing young girl you are with such a beautiful heart for the Lord. Our entire family has kept you and your family close to our hearts and in our prayers. God Bless you.
    In his love, Susan Landes

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  8. Calli, I cried as I watched you ring that bell. Just like the sounding of that bell was a declaration of the completion of one major milestone, there will be MANY more bells rung in your life! You are truly inspiring!

    I agree, a gift cancer gives, is the realization of how precious life is and how we take so much for granted. Your life is precious to us and I know you will have such a beautiful life because of how you learned so early to treasure each day.

    Love you and praying for you guys all the time!! If you need anything, you know I'm here!

    Lucianna :)

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