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.