Caleb’s Story

Site created on March 17, 2010

Welcome to our CaringBridge website. We've created it to keep friends and family updated about Caleb. You can read the introduction to our website, My Story.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.  If you are visiting for the first time it is helpful to change the order of the journal entrys to oldest entry to newest the first entry will give you the beginning of this story. xox
I have written Caleb's treatments he has/is receiving so far in the Background Story Section for anyone who is interested. 



Caleb was diagnosed with a brain tumor on Jan 28th, 2010 we were told the full diagnosis Diffuse Intrinsic Pontine Glioma after the MRI on Jan 29th, 2010 at BC Childrens Hospital.  We invite you to come on our journey of hope with us.  Through this website you can read our journal, look through photos and write a note to us.  Thank you to everyone for your support through this extremely hard time.  This tumor is persistent but so are we.  We love you all.  Thank you for visiting.  We look forward to reading your notes.
Love Shelley and Calvin

Caleb earned his angel wings after fighting a 20 month battle with DIPG on Sept 24, 2011. 

For anyone who is interested here is the treatment Caleb received during his fight.  I hope with all my heart that something changes so that other children will not have to suffer the fate Caleb has.

Caleb was dx Jan 28/10
Began 30 radiation treatments Feb 3/10
Began Temozolomide Feb 3/10 daily for 42 days
Finished radiation Mar 16/10
1 month break from chemo
April 16th started combination chemo Temozolomide/CCNU (Lomustine)
which was 6 rounds every six weeks
Added DCA  and Vitamin B50 1st week of June
Added Valproic Acid third week of July
Began customized vitamin regiment 1st week of  August which is provided by ISM out of Ottawa Canada
Last round of combination chemo begins Dec 9/10
Tumour progression confirmed Jan 13/11
Stopped all current medical treatment including DCA, Valproic Acid, Temozolimide and Lumostine
Beginning second round of radiation (30 Gy over 10 treatments) January 26/11

Started Dexamethasone Feb 3/11  (BLAH)
Finished second round of rads February 8th, 2011
Scheduled to start IV chemo Avastin February 24/11
Avastin was canceled
Researching next steps
Fought for and organized an experimental treatment Virotherapy which was to be performed by Dr Souweidane from Cornell Medical Center in NY, NY.  Dr Souweidane was to travel with us to Gaudalajara Mexico to do the surgery.

Caleb received MRI on June 13, 2011 which confirmed tumour was growing again.

Dr Souweidane cancelled the treatment because he believed it was too risky for Caleb.

Re applied for Avastin for radiation necrosis instead of anti tumour agent and was approved. 

Scheduled to started Avastin several times over a few weeks but was unable to get it because his platelet counts were too low. 

Received first Avastin infusion on July 12, 2011 despite platelet count.

Caleb will receive Avastin every two weeks indefinitely in hopes it will improve his quality of life.

Caleb received 5 treatments of Avastin, treatment was stopped due to skin problems and continued deterioration of Caleb's abilities and quality of life.  It is believed that Avastin helped us lower Caleb steroid dose much smoother than had we not done Avastin.

Caleb took his last dose of dexamethasone (his steroid) on September 21, 2011 he had a good day wand was out of bed for the majority of the day.

September 22nd he was tired and spent the day in bed but still had moment of being awake and communicated some.

September 23rd he became unresponsive sometime after 2:00am

Caleb passed away at 1:45 am Septemeber 24th.

He will be forever loved and missed by many and certainly never forgotten.



Newest Update

Journal entry by Shelley Lanz

Dear Caleb,

Your favourite day of the year is fast approaching.  We have decorated the tree, put lights on the house, baked some cookies, the shoppoing is done and our plans are in place.  I look around and see you everywhere.  I remember your last Christmas - knowing it would be your last - what an amazing and heartbreaking time that was.  I remember watching you and my heart shattering.  Knowing the reality we faced and trying to burn every image in my mind.  I remember wanting to stop time but time continued to tick away - it still does and I still wonder how it possibly could without you.  We are trying Caleb, we really are, dispite our broken and aching hearts, we are trying so hard to embrace the magic of Christmas.  For Avery's sake mostly but also to honour you.  I have thought a lot about why the holidays are so hard - everyday without you is hard but the holidays stab at my chest in a way I can't describe.  I think the reason these days are harder than others is because it is difficult to muster the energy to try and make a special day special when they could never possibly be better or as good as the ones we had with you - it would be easy to say - why bother... We have lost the hope of ever having a perfect Christmas or the best Christmas ever again.  There could never be a better one than one when you were here.  So I believe this is why the holidays hurt so much - there is no hope in them anymore, so in turn they feel empty.  I would give anything to have you back, to go back.

Merry Christmas my little man.  I love you so much and miss you so intensely.

I am trying to find some hope for Christmas and this song gives me a little:

A Different Kind of Christmas - Mark Schultz

Snow is falling Christmas Eve
Lights are coming on up and down the street
The sound of carols fills the air
And people rushing home, families everywhere

Putting candles in the windows
Lights upon the tree
But there's no laughter in this house
Not like there used to be
There's just a million little memories
That remind me you're not here
It's just a different kind of Christmas this year

In the evening fires glow
Dancing underneath the mistletoe
A letter left from Santa Claus
Won't be the same this year in this house because

There's one less place set at the table
One less gift under the tree
And a brand new way to take their place inside of me
I'm unwrapping all these memories
Fighting back the tears
It's just a different kind of Christmas this year

There's voices in the driveway
Families right outside the door
And we'll try to make this Christmas like the ones we've had before
As we gather round the table, I see joy on every face
And I realize what's still alive is the legacy you made

It's time to put the candles in the windows, the lights upon the tree
It's time to fill this house with laughter like it used to be
Just because you're up in heaven, doesn't mean you're not near
It's just a different kind of Christmas
It's just a different kind of Christmas this year


Love Mom




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