Wednesday, October 5, 2011

It's gonna be worth it!!!!


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.  


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!

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?  oh  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 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, 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 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 .... 


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


  1. I love you Lucy! Thank you for sharing your journey with us. It helps so much to know how to pray...the tears are flowing. I can feel your heart, and I don't understand at all either. You truly are an amazing woman of God who seems to be gifted in trust more then most. (HUGS) Amy

  2. Lucy, thanks for the update!! This post was so musically inclined and it made me smile.
    Just a note to remind folks to buy tickets from alison and attend the "Living Hope" fundraiser - the more the merrier!

    Linda is one of those lucky mother-in-laws, it makes me smile that you are friends.
    God is good Lucy. He loves you all- bad stuff just happens sometimes. I burnt the tapioca pudding tonight, that was bad.
    Remember, He gave you this mountain to climb so that you will be stronger. Keep the faith. love ya

  3. I've been thinking and praying for you alot this week Calli, and it's great to know that you're doing alright. Loved the music! It looked like so much fun, I just wanted to join right in!
    Have a great weekend!
    Lydia <3

  4. I gasped when I read what you said about Linda! I am so sorry, but also so proud of your all for the perspective you have chosen. You guys are being so faithful. Praying for you all! Thanks for this beautiful update. It really will be worth it all!!!


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