I can run!

Please pray for Chris Court's family.  This courageous, 7 year old warrior went to heaven tonight, and is with Jesus.  His family could use some extra love, prayers and comfort sent their way. Please pray for peace to envelope them.

Calli's front page newspaper story

14-year-old Upper Salford girl doing better than expected in fight against cancer (video) - thereporteronline.com

LIVING HOPE

LIVING HOPE 

Could you see the life in her...
As she danced to the beat of the band?
Did you see the fringe of her moccasins
Waving wildly as she moved?

Could you see me beam...
As she smiled at me?
Did you look into her eyes...
tranquil as a turquoise sea?

Did you see the  light 
Shining through her?

The life inside her is growing...
Loving being free.


You should have learned a lesson,
If you saw her last night at all...
She laughed 
She danced
She smiled
Everything to live for
Not a complaint at all

Thank you so much for everyone who came out and supported our family last night.  Most of you were strangers, and we are so thankful for your love and support.  Thanks too for all who helped organize, cook, set-up, serve, and the businesses and people who donated baskets, supplies, gift cards and food!

We especially want to thank Alison & Joe Dittmar, Sue & Ken McDermott, Laura & Alex Kozdra, Sandy Nulf & Brendan mcDermott, Ellen Nulf, Jadwega Healy & Dot Dittmar for helping organize and run the night.

The Other Brothers band- you rocked, seriously, you are great!  Caitlyn Landis, you are so talented and the cake was awesome- just perfect!  Danielle De'Ellia- you made an awesome flyer & Tickets- THANKS SO MUCH!!!

It was wonderful to see old friends, and family that had never even met Calli...and it was good to see family and friends who have!

PLEASE PRAY

PLEASE PRAY for our new friend and fellow warrior Chris Court- 7 years old, we saw him last week at Physical therapy, and then yesterday at clinic, and last night he was admitted to the PICU at CHOP.  He needs Jesus to step in and heal him.  He has an inoperable brain tumor, Grade III Anaplastic Astrocytoma (what Calli's tumor was before it became a Gliblastoma) but it is on his Brain Stem.  Please, Please Pray- don't just think it, don't just say you will do it- but really do it this time.

THanks

rappy poem by Calli

The stares 

The glares

The twisted faces

That I get

When I go All places

Just cuz I don't have hair

Doesn't mean 

I'm not a person

So dont you dare 

Make fun of me

I could be blaming God

Him I could be cursing

Instead I follow Him 

All my days

Trusting Him with whatever

Comes my way

I'm thankful for my family 

And my friends

That treat me normal

I'm sorry if I'm 

Shabby dressed

I may not look formal 

People aren't their looks

This is what I want to stress

That even the best 

Of the best

Are still sinners

It's what they are 

On the inside

And if by God's law 

They abide

Then truly these 

Are the winners

I AM NOT MY HAIR

Does anyone remember the musical hair???  

Check out these lyrics- please read thru them if you can stand it.....

Give me a head with hair, long beautiful hair

Shining, gleaming, streaming, flaxen, waxen
Give me down to there, hair, shoulder length or longer
Hair, flow it, show it
Long as God can grow, my hair
Let it fly in the breeze and get caught in the trees
Give a home to the fleas, in my hair
A home for fleas, a hive for the buzzing bees
A nest for birds, there ain't no words
For the beauty, splendor, the wonder of my hair
I want long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen
Knotted, polka dotted, twisted, beaded, braided
Powered, flowered and confettied
Bangled, tangled, spangled and spaghettied
They'll be ga-ga at the go-go, when they see me in my toga
My toga made of blond, brilliantined, biblical hair
My hair like Jesus wore it, Hallelujah I adore it
Hallelujah Mary loved her son, why don't my mother love me?

What's with hair anyway?

 There you go!  So some people put a lot of weight on hair, There are so many more songs out there about hair too.  My husband always told me that if and when I cut my hair short, he would divorce me.  Of course he was not being serious, but he was trying to tell me that he HATED short hair.  I did cut my hair very short- and I will say that was the worst year of our marriage :)

high school 1993 a sophomore at North Penn Senior high, I was so sick of people putting so much emphasis on other's hair...so I cut mine short the summer before school started- I mean pixie cut short.  It looked really cute.  

First day of school- two seniors called me "Chemo."  The thing is, at 15 years old, I did not even know what that word meant.  "Chemo," was my nickname for two months.  I was made fun of so badly and haggled so much, that I decided to leave school and home schooled myself for the rest of that year. 

The following year, I came back, and now my hair was a bit longer...I went to a basketball game, and one of the guys I was sitting next to, told me, "Now let your hair grow out, don't ever do that again."  I guess they told me....I did not cut it again...well at least not for a year :)

Rebellion

The thing is, I rebelled...but in a good way.  I rebelled against what the norm was, what was expected, what was comfortable.  My life was such a mess anyway, and my concerns were not on boyfriends, or the mall, clothes...make-up or grades-like all the other kids at school....I could care less what people thought of me then, so I rebelled against their protocol and I walked my own path, and I cut my hair.

I AM MY HAIR -really?

Last week, I was beginning to get that rebellious feeling again, but in a good way..against society our society today, not in the 70's with the hair song, but now- Lady Gaga, wrote a song- that seriously makes me sad.  I mean, I get what she is saying about her wanting to be unique by living vicariously through her hair and not have people make fun...but really??? Here are some of the lyrics- it just proves my point...it a weird but different way that people are too focused on hair, their hair, our hair....

I just wanna be myself

And I want you to love me for who I am.
I just wanna be myself,
And I want you to know, I am my hair.

I've had enough, this is my prayer,
That I'll die living just as free as my hair.
I've had enough, I'm not a freak,
I just keep fightin' to stay cool on these streets
I'm as free as my hair.
I am my hair.

So she IS her hair.  she says it like 50 million times in the song.  I disagree- I think she hides behind her hair.  (All you Lady Gaga lovers out there- don't be haters of me, just try to see what my point is- or don't)

I am that mom that would go bald

When Calli got cancer and was losing her hair, I knew I would shave my head.  Wouldn't you?  Maybe not, probably not.  Why?  Ask yourself why.  Seriously ask yourself.  I told Calli I was going to and she said no.  What?  Why not?  You can't be bald alone!  Calli would not let me, did not want me to- it was her battle, her war, her loss...she owned it, and she wanted to look at me and see normal.  Two weeks ago, she looked at me and said, "When I look at you, I am reminded of what my hair looked like."  

DAILY REMINDERS

When she posted the poem she wrote yesterday, my heart was ripped inside out.

It was very hard for her, after her hair was gone....she struggled and still struggles to feel beautiful.  For years and years the first thing anyone said to her was "You have the most beautiful hair."  You are so pretty, your hair is so curly etc....all things were about her hair, not her personality, not her spirit.  

I thought, to a degree, that she had become comfortable with being bald, after all she lets me post pics of her on here, and rarely, will venture out without a hat, or a scarf. 

Yesterday something changed

She looked at me, and told me that she was beginning to resent my hair.  It was providence, it had to be, I was also resenting my hair, Each morning I woke and felt extremely vain washing it and watching as my tendrils curled.  I began having dreams about shaving my head, over and over again dreams came at night and I was shaving my head.  It was funny, because she keeps having dreams about having long beautiful hair again.

So last night, she asked me...  I wholeheartedly said yes.  

She asked Mike, he agreed....

and even Aidan joined in....

while she shaved our heads.  

It was a wonderful bonding experience.

You may disagree, but frankly we don't care anymore. We had really good reasons....

CALLI- our precious sweets- you are not alone, you are not the only one that is bald in our home.  Walk tall, take off your hat and be free, you are not the oddball- we ALL ARE!!!   

Calli stepped out today without a hat, or a scarf and was so beautiful and confident- her grandmother even said she sounded more chipper on the phone :)  It was however a very cold rainy day, so tomorrow we may wear a warm cozy hat!

SOCIETY- WE ARE NOT OUR HAIR!!!!!  We are human beings with spirits and personalities and yes some of us live that through our hair, or clothing, but it should not be the focus!  The focus should be the person.  There are kids that will not look at Calli.  How do you think that makes her feel?  People stare at her all of the time, and I know they are curious, but I just want to stick my tongue out at them sometimes, but I smile and pray a blessing over them instead.  So now they can stare at me :)

AWARENESS- I had so many people acknowledge today, all strangers - they looked at my head, looked at my gold & gray ribbons, and then at Calli who was confident and bald today- (yeah!)and they knew- they are now aware- a child has cancer.   

September was Childhood cancer awareness month...how many gold ribbons did you see in stores?  Did you do a 5k, or pick up a yogurt or cereal box with a gold ribbon on it?  I want to make people aware of the battle our children are facing and that more funding, and more research must go to childhood cancers along with the others that we are most  aware of.  Calli  said  that she never knew kids could get cancer until she was diagnosed.   

Speaking of Childhood Cancer awareness month- THANK YOU THANK YOU THANK YOU  to the prayer group of women at Franconia Church- you know who you are, The Office workers at I.T. Landes & Son, Susan & Ali Landes, Ellen Nulf, Laura Kozdra, Alison Dittmar & Jadwega Healy for making so many bags for the parents and children at CHOP.  Thank you for stepping up!  We delivered over 200 bags in the month of September!!!

I made a nice video of our hair shaving party to this song :) 

-called I AM NOT MY HAIR- by India Arie and Pink helps her sing it too :)  We think it should be played as much if not more than Lady Gaga's song- it sends a good message-

a poem I wrote this morning

I wrote this poem this morning....

-Calli

She keeps her scarf on 

Till the end of the day.

She's lost all her hair and

Is scared what they'll say.

She'll take her chemo and

Fall fast asleep.

Just to wake minutes later...

Her old self, to weep.

She'll barf and she'll barf

Till her stomach is sore.

So she calls out to Christ,

Her beautiful Lord.

Then she heard a voice...

Somewhere deep inside.

It said, "I've heard your prayers and

I've heard your cries..."

"So I'll take this cancer...

Out of your life.

I'll give you rainbows and

Brighter blue skies."

My world Traveler

So, here is a Geography lesson:  Where is TOGO?  Kind of cool huh? Who knew?  So, I just figured out how to look at the pageviews of the blog by countries :) Calli my sweets, do you realize that you have traveled to every continent in the world, except for Antarctica- but I did not think that you wanted to go there anyway!  I knew you would be a world traveler, just like you said :)  Pageviews by Countries

United States      40,478 Israel                       557 Australia                   86 Germany                   72 United Kingdom         69 Canada                      53 Switzerland                 25 Puerto Rico                24 Togo                          22 India                         21 South Africa               11 Philippines                   4 Ireland                         3 Bolivia                         2 South Korea                 2

It's gonna be worth it!!!!

DAN GUN NIGHT

It was a very fun night on Monday, when we celebrated Dan Gun day at Mark Cashatt's TaekwonDo.  The event included a short play, telling the legend of Dan Gun, a pattern competition, and Korean food & treats! 

Aidan got first place in his division for the DAN GUN PATTERN COMPETITION

We were so proud of Aidan, when he won first place for his division!!!  Here is a picture of all of the 4 first place winners and some of the judges. 

Aidan gets his name forever engraved on the plaque!

  Aidan is so dedicated, and is learning so much, including compassion and humility.  He had to compete against one of his very best friends the first round, and when he won that round, he sat down and had a sad look.  Afterwards, I asked him why he looked so down, and he said that he felt bad his friend, a higher belt, had not won.  He was sad for his friend.  I will add that he was the lowest belt in his division, and won first place.  

ON THE ROAD AGAIN

So, many of you are probably wondering what is going on with Calli.  After her MRI, Mike, Calli and I made the decision, a very hard decision, but together we decided that she would continue with more chemotherapy at CHOP, but with a few tweaks of our own.  

Her doctor, suggested we follow a phase II trial from DUKE, combining Avastin, Temodar and Irinotecan.  Three Chemotherapy's- yuck!  They have had some promising results, but promising for them is different than promising for us.

So, we took several weeks, prayed, researched and talked about our options.  We asked many questions, and finally ruled out Irinotecan.  Irinotecan makes you lose your hair....Calli's is just starting to fuzz back, and it was very important for her to keep what little hair she has.  Secondly, Ironotecan has majorly dehydrating side effects, and Calli is not really eating much of anything now anyway, and we were not willing to increase the risk of more hospital stays due to severe dehydration.  

After some deep digging, I found several supplements that have been successfully tried with Glioblastoma in studies published by doctors in Italy, Japan, Canada and Brazil.  I printed them out,and took them to Calli's doctor.  She is totally willing to try anything, and will watch Calli closely for any ill effects.  So, we are trying major high doses of Vitamin D, Borage Seed oil, Evening Primrose oil, Flaxseed oil, Curcumin, Fish oil, and melatonin.  On top of that we took her to a nutritionist who put her on a very restricted diet and added a good multi-vitamin, some other supplements as well as greens, probiotics and herbal bitters to detox her liver.

Unfortunately none of the supplements are covered by insurance.  The FDA is currently doing trials on most of the above mentioned supplements, but until approved for efficacy, will not be covered. 

So, we are making bi-weekly trips to CHOP in Philly for infusions, and weekly for blood work.  She also has started physical therapy again.  She has major yucky days, and can hardly keep things down.  We had three of what may possibly be the worst weeks yet- she was just so sick.  We all believe it was just a combo of radiation side effects peaking, the chemo combined, and the detox- all make you sick and yucky.

Today she is great, she has not vomited since Friday, and she had an infusion yesterday- so this is a great day!   

Please continue to pray for her energy, strength and for her to eat!

FUNDRAISER

My Aunt and cousins are planning a fundraiser for Calli- you can find the info to the right of this post :)  Here is the Flier (Thanks Danielle!!!)

SCHOOL

School?  oh yes...school.  We started school slowly in September and are full swing now in October...sort of.  Listen, we have days where is seems like nothing is being done "school wise," but my children are learning invaluable lessons not taught in a classroom.  Take yesterday for instance...

We were sitting in clinic at CHOP from 9-2:30- and still had not gotten her several hours long infusion....seriously that is a totally normal day.  Mike- a Music therapist came and gathered some of the kids, and they totally jammed for an hour in the corner of the clinic.  I cried, it was beautiful to see the kids smile, to see Calli and Aidan seriously playing and then crack a smile- they were so awesome...here is a short clip

and this one too...sorry it is sideways!  it may not sound like much to you, but it was beautiful, and they literally played for an hour- it was a nice way to make waiting more palatable.  Music is energizing, uplifting, sobering, calming...you can find each emotion in music.  Thank you Mike at CHOP!

So, you see, we had music class :)  after  5 1/2 hours in the clinic, we finally were brought over to the day hospital for her infusion.  I was able to read some history, science  & literature to them for two hours...so that was school yesterday.  We have to have a new normal.  Everything will get done.  I guarantee you Aidan can tell you all about  Ptolemy and the Geo-centric system, and the Catholic church and the dangers of believing things from people at their word.  Perhaps they were right before, perhaps they are the most profound scholars and preachers, of their day....but just because they have been right before does not mean they are always right....that is dangerous .... 

It IS JUST A WORD NOT A SENTENCE

Mike's mom had been ill the whole time she was helping us, she put herself last, and Calli first.  Each day she drove with us,and spent long hours and days with us, she was sick, in pain, and tired.  She never uttered a complaint, never uttered, "I need to rest," never let on that  she needed surgery....never let us know.

As I sat next to Linda in her hospital bed, she asked, "Why now, why does this have to happen now."  I told her that I don't know why this is happening now.  I just don't know everything and am not going to pretend to.  I don't know why Mike's Dad died from cancer so young, I don't know why Tiffany had a stroke at 9 years old, and I don't know why Calli got cancer, and now she is sick, and needs surgery, and .........

I know this, I am not going to get angry at God, I kind of feel like a little girl, just trusting,  my Father, not understand a bit of the world around me, but just feeling secure and Hopeful that He is gonna take care of it all.  She agreed.  We agreed that we do not understand what is happening, but to trust God in yet another trial- That night, she got 2 units of blood to prepare her for surgery the next day.

The next morning, I had good thoughts towards her, and as I walked into her room, I just felt peace.  She is gonna be ok, and she is gonna be well, she is gonna be good.  Her sister Mary and I walked along side of her hospital bed, and as we came to the OR, I leaned down and prayed with her and kissed her teary cheeks.  We both were tearful but not in fear, but in love.  I love her, I love her humility, her willingness to give all and take nothing back, I love her stubbornness, her quietness, her grace, and poise.

When the doctor came in, and told us she had cancer, It was just another word.  I know that it sounds weird, but it is just a word.  Hers was caught early & was contained, and they believe that they got it all out.   I was joyful and thankful, to God for preserving her life.

Yet, I my mind wanders.....aimlessly at times, thinking deeply about our life.  Just in the last few years, so much has happened...Mike lost his father- in the prime of his life to cancer...our niece Tiffany had a stroke at 9 years old, Our daughter, Beautiful Callahan, diagnosed with a horrible horrible cancer, and now his mother....and I am not mad...I don't understand it all...I don't even think I want to..I leave that up to God.  He knows.

I know and trust that God's thoughts towards us are good, of peace, and not of evil, to give us a future and a HOPE- A LIVING HOPE!!!  FOR LIFE- and abundant life!  

When thinking of a "theme" for Calli's fundraiser, we asked Calli what she wanted, she said, "Mom, I have a LIVING HOPE."  Yes she does- GOD is alive- he is her LIVING HOPE, and she is herself a LIVING HOPE!  

This song, I just can't stop listening to it- I hope it blesses you.

I don't understand Your ways
Oh but I will give You my song
Give You all of my praise
You hold on to all my pain
With it You are pulling me closer
And pulling me into Your ways

Now around every corner
And up every mountain
I'm not looking for crowns
Or the water from fountains
I'm desperate in seeking, frantic believing
That the sight of Your face
Is all that I need
I will say to You

It's gonna be worth it
It's gonna be worth it
It's gonna be worth it all
I believe this
It's gonna be worth it
It's gonna be worth it
It's gonna be worth it all
I believe this

You're gonna be worth it
You're gonna be worth it
You're gonna be worth it all
I believe this
You're gonna be worth it
You're gonna be worth it
You're gonna be worth it all
I believe this

Rushing Wind

Rushing wind blow through this temple,

Blowing out the dust within;

Come and breathe your breath upon me:

I've been born again.

Holy Spirit I surrender; take me where you want to go.

plant me by your living water,

Plant me deep so I can grow.

Jesus you're the one who sets my spirit free;

Use me Lord; glorify your Holy name through me.

Separate me from this world, Lord;

Sanctify my life for you.

Daily change me to your image,

Help me bear good fruit.

Every day you're drawing closer;

Trials come to test my faith.
But when all is said and done, Lord 

You know it's been worth the wait.

Jesus, you're the one who sets my spirit free;

Use me, Lord; glorify your Holy name through me.

This is one of my favorite songs by one of my favorite artists.

Does anyone know who the artist is...no cheating!

Love,

   Calli