The Scene- by Calli

The Scene

by,

Callahan Mae Derstine

When the field is golden yellow 

And the sky is turning grey,

That is always my favorite part

Of the long and weary day.

As I glance out my window, 

And behold ....this scene.

I am in awe.

I see the Crow circling above...

Soaring in the wind,

And I hear it's raspy caw.

The Bluebird and the Chickadee, 

In our bushes play.

That is always my favorite part 

of the long and weary day.

The wind... it whispers.

the rain... it sings.

But the hawk still flies,

On his auburn wings.

This scene....It is serene.

There is no way I could describe it.

There is no way I could say...

Except,

It is always my favorite part 

Of the long and weary day.

photo taken by Calli last week- Isn't she good!!!

ODE TO JOY

For those of you who are worried...don't be!  MRI results are in & we were not worried of what it would show, or not show.  We were prepared to see swelling and tumor breakdown...which there is!  Right now the main tumor is breaking down and has some holes in it.  There is a lot of swelling below it-due to boosts of radiation & breakdown.  The tumors above look as if totally gone, but she moved so on most slides nothing is there, but they cannot say absolutely, because when you move during an MRI, it clouds the view.  There is absolutely no spread, growth or anything in her cervical spine or brain.

Today Calli performed with the One Voice Handbell Alumni Choir in a wedding.  They really did terrific, considering they just saw the music last week for the first time, and  rehearsed the songs only 5 times!  I will post a video of ODE TO JOY- my favorite of the day!

She is quite exhausted still :)  Each day she is fighting back throwing up.  We are really trying to get her to eat as much as possible, but nothing is appetizing when you feel sick! Blech!  I have been trying to give her supplements and vitamins, and seed oils to stimulate her adrenal glands and give her some sort of nutrients.  We learned the hard way after several tries, that she has to eat something substantial before even trying to keep the pills in her stomach! 

She is quite determined though...Friday morning, just as we were leaving to go to Bell Choir, she got sick, and lost all of her vitamins and breakfast.  She recovered and was determined to still go to bells.  We were only a little bit late :)

We were given a very nutritious and organic protein  drink from a friend & she actually likes it! It is called ORGAIN.  So far, she likes chocolate and vanilla, and the first ingredient is NOT sugar :)

So far, I have collected 34 bags for CHOP dads & moms!  Thank you to those who took time out and effort to help some others.  Aidan and I made 30 ourselves too. On Monday, I will take them all down and give them to the Child Life Workers on the Oncology Inpatient unit to give to the parents that are there now.  THANK YOU! I am hoping that some people would want to make the NO SEW fleece blankets for the kids :)

Here is part of ODE TO JOY that they played today :)  Calli is second one in :)

LAUGHING & HOLDING ON

Yesterday was a very long day :)

We arrived at CHOP at 9:30 for our appointment with our doctor- waited two hours to see her (those neuro Oncologists- are very busy ya know), then went to Penn for her appt with her radiation oncologist.

Her neur oncologist secured a 7 pm appointment for Calli's MRI- hoping to finish it. This time- with NO meds! She can do it- we both encouraged her and believed that she could do it. They had scaled it down to a little over an hour, by eliminated some films, and they promised she could watch a movie!

She has never been allowed to watch a movie, and her doctor said, "WHY NOT?" I guess scans of brain include orbits- but they are not concerned about her orbits, so she could watch a movie!

By now it was 3 pm, and neither of us had eaten, she was exhausted and she went to Oncology's day hospital where they gave her a bed to lay down.....All she wanted was top ramen- all day, was asking if I could find her some. They don't have it here in the hospital, I asked, I went to Penn and asked them..nope, finally went to the gift shop in the hospital and they had it! Who knew?

After a snack, she slept for several hours. Then they woke her to....stick her again- we are losing count, but we believe it has been 12 sticks for IV's in the last three weeks! Nurse Amy took her time, and got a good vein. They could take her blood from that stick, so as to save her another one!

After resting we went to the MRi suite and got changed, picked a movie and waited our turn. She was happy, because the movie is thru goggles which totally block out all vision of the long skinny tube she is in...she also has headphone which block most of the jackhammer noise. All settled, relaxed and watching a movie...they start the test and....THE MACHINE BROKE! OYE VEY!

We just laughed, I mean really? What else could we do? So, off the table, back to the gowned waiting area, where all the other kids are waiting. They tell us that she has to wait another half an hour until one of the other machines opens up. half hour- you got it! She popped in a movie and in no time we were putting her on the next MRI...one glitch they mention at the last second...you cannot watch a movie on this machine! UH OH. Calli of course, is not ok with that, and starts to cry and is now scared. We talked her into at least trying it, with me standing holding her foot the entire time, and giving her a mirror so she could see my face and I could see hers. She agreed.

Back on the table, into the tube and she freaked out. Could not do it :(

So, they say that the next table would not be ready for another hour and a half, but she could watch a movie on that machine. We chose to wait, we had already been there all day and by now it was close to 9:30. We watched a movie and just as I started to relax, I remembered that I had parked at PENN! UH OH, I needed to move my car to CHOP, or I would not be able to get it out! So, I went across the hospital, stopped at McD's got her a cheeseburger, me a coffee and walked across the street to get my car. As soon as I pulled into the CHOP parking lot, Calli texted me that she wanted nuggets :)

After parking, I went all the way back across the hospital for nuggets and a shake for Calli. She ate just a bit, and then it was time to go! Laughing and relaxed, all the nursed and the Resident were all saying sorry and how patient we were...I kept saying that God was definitely trying to teach me patience :) We got in the machine, she did swimmingly! YEAH CALLI!!!!!

We were all done, got changed keys in hand and walking out the door when....STOP, they forgot to do one of the scans! Really? We just busted out laughing so hard, what else could we do? Right? So she got changed again, we all got screened again, back in the machine, movie back on and after about 15 minutes, she started saying in an unsure voice, "Mommy?, Mommy?" I was sitting in a rocker about two feet away from her, so I got up and held her foot,and rubbed it back and forth to let her know that I was there. The nurse said over the intercom that she had 47 seconds left,and she did it! Apparently the credits were rolling on her movie and she did not know how much longer it would be :)

So we got home, around 1 am- I think, I do not even remember.

It was a long, busy, but good day :)

Calli likes this song by Jamie Grace called hOLDING on

So, I made a little video of her

Gabby

getwellgabby.org

I am very sad and heartbroken for the Vogel family today.  Sweet little Gabby left this world last night and sat on the loving lap of Jesus.  John & Carolynn, I am so sorry, she is precious and did not lose a battle, but won- she never gave up, don't stop holding on or believing..... this is for you.

MRI...or not

We arrived at CHOP for Calli's MRI around 7 am, to a full parking lot- literally NO spaces I am guessing due to change of shift :)  I drove around for 15 minutes trying to find a spot and again ALL of the handicapped spots were taken by NON-Handicapped people.  This irritates me to no end....  When we finally got in the hospital, we went where three nurses has told us to go- and all lights were off, no one was at registration desk.  I flagged down two surgeons who really had no clue where to direct me.  Fine, that is ok, I KNOW this hospital,and where every MRI suit is, so I will just go there myself....doors were locked, so, I called the main number and asked them to put me thru to the MRI suite...I got a machine!  So, I called back and asked her again, to put me through to a desk, where I know someone is sitting, and I know there is a phone, and a person who will answer it...after all, they are waiting for us :)  So she did, and I got through,and they met us and escorted us back to the sedation suite, and wondered themselves why someone was not at the registration desk.

After a bunch of paperwork, they were ready to start her IV, and asked where i would be waiting during the test, and I told them that I would be sitting in the room with her for the test- they looked shocked.  What?  Don't all other mom's sit with their children during MRI's?  No, not for 4 hours, they told me it was ok to go get coffee and a magazine.  No thanks!  If she has to be in there for 4 hours, I will too.  I do not mind, & she wants me there....even if she is sleeping.  I am her mama, that is my job.

They said that they will be giving her IV meds to sedate her...with the same breath they informed me that the meds they give put most of their teens to sleep for hours, and if needed, they could administer more meds through her IV, if she looked like she was arousing from her deep sleep.  So, another IV line was put in, but it hurt and swelled right away..but they just kept in in anyway, saying they probably would not even need to access it, because again, these drugs usually keep most teens asleep for a while.

OK....I had previously informed the nurse on the phone last week, that this was tried before- back in June at PENN...when they tried to fit her for her mask & set up for radiation..... and it backfired, she had never stayed asleep, or calm and it had the reverse effect on her, making her confused and irrational and they had to send her back to CHOP to sleep it off- which she did- for 10 hours!  The nurse last week told me that she would be put to sleep, not sedated.  So someone changed their mind about that, and even tried to tell her that she could do it without any meds.  I looked at them, and asked- "Do you think you could be strapped down to a table and put in a long small tube, and have a big head piece on and padding in between your ears and it to keep your head from moving..no music or movie allowed..for 4 hours?"  No, did not think so either.

The Nurse assured me that this concoction was very different and that most teens are so knocked out that they become drunk, and have to sleep it off for an hour.  So then, the Nurse practitioner came in and started talking about if they had to give her more meds, that her airway would collapse and they would have to take control of her breathing, and she then informed me that it probably was not going to work out anyway.  Well then...way to be positive.  My then calm and rested Calli become anxious and afraid.  THANKS!

I calmly walked out to the desk, and informed her that she was completely out of line for speaking that in front of Calli, and that NOW she was pumping adrenaline.  She is 14 not 4, understands everything you are saying,and you have now made her anxious.  The doctor, who was standing there, apologized for her and agreed, that it should not have even been stated to either of us, let alone in front of Calli. 

So what do you think happened when they gave her the meds that put most teens to sleep for hours?  WIDE AWAKE.  push more meds.  She slept long enough to get her positioned on the MRI table, then she WOKE up, confused and loopy, asking if the test was over!  PUSH more meds- nurse has now run out of meds to give her before the test even began!!!  4 hours of scans to go, doctor comes in and says that she CAN give her more meds, but she will have a hard a long recovery & they have to watch her airway-.  Fine, we have to do this test. 

She proceeded to wake every 15-20 minutes in the middle of a scan, and they would have to re-medicate her & start the scan all over again....the machine broke down twice, because it thought the tests were taking too long, which they were, so it needed to reboot twice.  Then we moved her to another MRI machine,and tried again.  Each time she woke, she was more and more afraid, confused, irritated and freaking out. 6 hours later, they had only finished half of all the tests.   She was done, we were done. 

We went back to recovery, and she was so confused, and strung out- she had so many meds in her.  She was crying and crying for Mike, and would not allow me to leave her side(not that I would), she wanted me close to her, holding her,and consoling her.  Which I did gladly.  It took hours for her to finally wake enough to drink, but she was still so loopy. 

The doctor came in and informed me that Calli could not come back to sedation, because, well she had such a strong will and high constitution that their meds do not work on her. Yeah...duh.  So, she is flagging her and now, she will need general anesthesia for her MRI's.  ugh.

I got her home quite late, and Mike helped to to hold & stabilize her and get her into the house and in bed.  She was not listening, could not comprehend what we were saying at all and just needed to sleep it all off.  Today she is better, but still confused.  She remembers a little bit, wanting her daddy, and being in the tube, not understanding why she was not asleep.

All in all, the day stunk!  She woke later last night, and We all watched 127 hours.  It is a true story about Aron Ralston, a mountain climber who got pinned against a canyon wall when a boulder became dislodged, crushing his right forearm . He had not told anybody of his hiking plans and knew no one would be searching for him. He spent five days sipping his small amount water, & trying to free his arm. He realized that in order to free the arm, he would have to cut through his bones.  His tools were dull and did not work.  When he ran out of water, he videotaped his goodbyes to his friends and family, carved his name, date of birth and presumed date of death into the canyon wall, fell asleep and gave up.   He did not expect to survive the night & found himself still alive at the dawn of the following day.

From there, he broke his arm bones & amputated his arm with a two inch knife. After freeing himself, he  climbed out of the canyon by rappelling down a sheer wall one-handed, & then hiked out of the canyon for miles until he ran into another family hiking..he kept moving until the rescue helicopter came for him.  He never gave up, and still is a mountain climber today.

Mike laughs at me, because lately I am finding lessons in everything.  Aron Ralston, this movie..I am finding a lesson there too.  He tried everything he could to free himself, to conserve and save his life...and then gave up, said goodbye to his family and friends and prepared to die.  When he awoke the next morning....he had a fresh epiphany- there is another way.  IT will not be easy, it will hurt more than anything ever has before.  He will lose something he he needed before...but he would live, he would survive.     Things must die to live...things must end to begin.  This theme is still coursing through my veins.

To never give up HOPE, to always BELIEVE, to SIMPLIFY LIFE, to LET GO to START FRESH

...... sometimes we have to leave things behind that we thought we needed to survive....letting things die that must die....sometimes it is an arm, or hair, or an idea, a way of life, a habit, a cure, a thought, a way we did things before, family or friends....it hurts, it is painful, excruciatingly painful, but we are dying to survive, to live.

I feel like writing a poem....

Wash our minds

With Your words each day

Help us to forgive 

Always  to HOPE and pray

Bless those that curse us

Help them to see...

We have a new normal

It is as abnormal as can be

Conversations are tough

Always turning to a fight

Only capable of handling so much

We turn to take flight

Away from it all

Back to our small

Which is really quite big

Shifting our focus 

Beginning fresh & new 

Having the courage

To do what we must do

Dying to live

Pain inside

Strength to let go

Not run and hide

Hard things have a cost

Losing our life for gain

Lord help us today

To stay simple and plain

Our life is so complex

Too lofty for us to understand

Please keep our thoughts 

On what You have planned

 

Early this morning, I will be taking Calli for her MRI. It will be between 4-5 hours long! I go in the room with her the whole time, I am thinking of crocheting a scarf....I don't think my aluminum hook is magnetic...well we will see if they let me bring it in:). They will be sedating her this time, last time I sat in a rocker. This will be her 8th MRI! Actually, it is 4 different ones! So, 8, 9, 10 & 11 So that would be 4 more beads for her beads of courage necklace! Calli is loving ringing bells again! She pushes herself to do It, and is deyermined to ring out any nausea or pain :).

The Horse Farm

The first week of August, Calli & Mike were sick,and then she was well for a week....so I asked what she wanted to do and there was one answer: Go to the horse Farm. 

So, we went down to my old stomping grounds, Four Maples, and watched one of her best friends jump with the horses!     Calli wanted to ride, and so did Aidan.  SO, they each took turns, and with some help from Jimmy and Sue, Calli got up and rode on her own.  Taking it slowly, and gently walking the horse around the ring, she was able to steady her own body and work on her balance.  Horse back riding has been proved a great therapy not only physically for balance but emotionally, and spiritually as well for your mood :)  She really enjoyed herself, and helped to cool off the horse when she was done. 

"I am not helping her!"  -Jimmy

Riding Boynton :)

 

When Aidan had a go at it, Jimmy did not know what to tell him :0   He has no fear, and well no training in horse back riding, especially not English saddle and just wanted to make the horse run and work hard :)  All boy!  Well, he did ok though, and the horse did not kick him off, so it was fun to see him smile.  He was such a good boy and helped Jimmy & Sue clean out some stalls.  As soon as Calli is up to it, we plan on going back again.

classic!

All in all, it was a good day :)  

<3 humble, simple, caring people

Telling Calli how much she knows she is gonna make it!

Nea <3

BOOMER!  Chasing Frogs :)

Peabody

Home

Home.  

What a lovely warm word.   We are home now from the hospital, and plan on staying here for a long time!  

So, several things happened after we were discharged from the hospital the first time.  We had come home with Calli still having a fever, which we well knew was a kidney/bladder infection...but they had cultured it and pinpointed the right antibiotic, so they felt confident that Calli could fight this at home...away from more germs.  

But, after we arrived home, things went down hill, she could not eat, could not move her head, neck or even sit up, she was sleeping 24/7 and light was hurting her eyes, on top of that, her fever was getting higher and higher!  After 2 days of the right antibiotic at home, I began to think my child had something else going on!  So, back we went!

Driving on the highway at night, is not bad at all, I have learned,  We got to Chop's ER in 35 minutes flat.  They whisked her away from all other people in the waiting room, isolated us in a private room, and began the pokes, prods and tests.  I thought she had meningitis, they were not sure, so they admitted her.  3 pokes later and an IV finally worked in her arm.  She had a total of 9 pokes in the last two weeks for IV's.  

After a few days, we all figured out that a few things were going on at the same time with Calli. Besides the kidney infection, she is having major radiation side effects.  Radiation stays in your system and builds-up, increasing and increasing.  Due to this, her tumor is breaking down (good!), causing major swelling, blood product and...in essence meningitis in her brain & cord (inflammation due to side effects not a virus or a bacteria).  That explained the neck, head, vomiting.  Now...couple that with the other side effects of radiation that are having their hay day right now...major nausea, vomiting, and extreme fatigue. 

On top of that....because she was on steroids for so long (to decrease said swelling), her body decided to take a break on making the stress hormone cortisol, which helps you get better when you are sick.  You see, the steroids helped decrease the swelling in her cord and brain, but to stay on long term...makes you unable to fight simple infections...so we weaned her off of them the last month.  BUT NOW, we are seeing those side effects- ugh, the remedy? put her on more steroids....

Her body would not assimilate the antibiotics,no matter if they were right or not.  It was just trying and trying so hard to get better, but could not.  Her blood pressure was so very low, and her heart was beating so very fast, and her fever would go and come and go, she could not eat, I had to force her to get up and go to the bathroom.  So besides IV fluids & antibiotics, she got IV cortisol, and after two days of that, we saw a huge turn around for her..She was sitting up and doing physical therapy, and her beads of courage, the day we were leaving I took her down to THE VOICE

We LOVE Kristen, she was our very first PT!

a bead for everything.......

Therapy, going back and remembering all that she went through and overcame!

The VOICE- she was quiet...ha ha

I even got her to let me put on my fairy wings and prance around!  I will do anything to make my Calli smile!

It was on the evening of Aidan's birthday, that we were allowed to come home :)  Mike surprised Aidan by taking off of work, something he NEVER does.  Aidan was so surprised and elated when they took a long drive and ended up at Cabelas!  After spending all day at Cabelas with his dad, we surprised him, and he was so happy that we did not miss his special day (well night).

Happy 12th Aidan Michael!

So now, Calli is mending, but the major effects of radiation are increasing.  She sleeps about 18 hours each day.  She woke yesterday, did some math, took a LONG nap, and rang bells for the first time.  I was not sure at all how she would do standing for so long (2 1/2 hours)...but it is one of the only things she looks forward to, and she is ringing in a wedding next Saturday with some very talented ringers.  She made it through the whole practice, and then got in the car...gagging the whole way home.  As soon as we walked up onto the front porch she threw up all over the bushes.  She cannot stand the smell of food, and someone had a hoagie or smelled like a hoagie- and she was holding it in that whole time, determined to succeed in a normal thing.  I asked her when she got home, if it all came back to her.  She replied, "Mom it never left me."

I had a LONG nap, and am Ready to ring!

So, we are slowly starting school.  We were given a 6 week break from all doctors and just could not stay away:)  Oh well right?  We did do some pretty neat things in just a few weeks, so I will post some pics of before she got sick.

On another note, her MRI is this saturday.  It is 4 hours long :)  Monday we go back to CHOP and meet with her team of Neuro-Oncologists, to discuss the new baseline the MRI will give us, and what they think they desire for us to do.  We are still praying for wisdom and illumination from the Lord on our next step.  

Days here are simple,and slower and it is nice.  Less is more <3

This next song always makes me want to get up and dance, It is a good one :)