Cristian Rivera Foundation

DIPG Angels

Adrian Hagman

Date of Birth: February 17, 2006
Date of Diagnosis: May 5, 2011
Earned His Wings: January 8, 2012

Aimee Dickey

Date of Birth: July 22, 1996
Date of Diagnosis: September 27, 2007
Earned Her Wings: December 12, 2008

Date of Birth: February 15, 1994
Date of Diagnosis: December 12, 1997
Earned His Wings: July 27, 1998

Alicia Martin

Date of Birth: September 11, 1998
Date of Diagnosis: August 3, 2005
Earned Her Wings: December 23, 2006

Alicia Pueyo

Date of Birth: February 26, 2000
Date of Diagnosis: August 21, 2006
Earned Her Wings: November 21, 2007

Allen Xiong

Date of Birth: February 14, 2008
Date of Diagnosis: October 27, 2015
Earned His Wings: October 9, 2016

Alyson Usher

Date of Birth: July 13, 2006
Date of Diagnosis: November 28, 2011
Earned Her Wings: November 29, 2012

Andrew Smith

Date of Birth: April 21, 2001
Date of Diagnosis: October 26, 2007
Left Us: December 4. 2009

Ashlyn Poole

Date of Birth: July 31, 1990
Date of Diagnosis: July 9, 2010
Earned Her Wings: January 23, 2012

Aubrey Bonnichsen

Date of Birth: December 15, 1995
Date of Diagnosis: June 30, 2009
Earned Her Wings: February 18, 2011

Brendan Duhaime

Date of Birth: March 8, 2003
Date of Diagnosis: November 23, 2009
Earned His Wings: June 18, 2011

Brendan Pederson

Date of Birth: March 9, 2001
Date of Diagnosis: February 19, 2013
Earned His Wings: March 26, 2013

Brooke Elizabeth Healey

Date of Birth: September 3, 2008
Date of Diagnosis: January 14, 2013
Earned Her Wings: September 9, 2013

Caleb Lanz

Date of Birth: November 16, 2001
Date of Diagnosis: January 28, 2010
Earned His Wings: September 24, 2011

Carlos "Juju" Ibarra

Date of Birth: October 31, 2007
Date of Diagnosis: November 30, 2010
Earned His Wings: September 16, 2011

Date of Birth: May 17, 2007
Date of Diagnosis: January 13, 2011
Earned Her Wings: November 11, 2012

Colton Tanner Thurman

Date of Birth: February 2, 2005
Date of Diagnosis: January 13, 2009
Earned His Wings: October 31, 2009

Date of Birth: September 13, 2002
Date of Diagnosis: January 22, 2007
Earned His Wings: January 25, 2009

Delaney Starcher

Date of Birth: April 1, 2004
Date of Diagnosis: October 9, 2008
Earned Her Wings: December 1, 2009

Dominic Henriquez

Date of Birth: June 14, 1993
Date of Diagnosis: December 20, 2011
Earned His Wings: February 3, 2013

Domonic Lee Horns

Date of Birth: June 26, 2001
Date of Diagnosis: April 1, 2009
Earned His Wings: September 20, 2009

Elena Desserich

Date of Diagnosis: November 2006
Earned Her Wings: August 2007

Emily Jane Thorburn

Date of Birth: February 8, 2005
Date of Diagnosis: April 29, 2010
Earned Her Wings: August 15, 2010

Emma Bartolomucci

Date of Birth: December 12, 2002
Date of Diagnosis: February 2, 2010
Earned Her Wings: June 4, 2011

Emma Marie Marques

Date of Birth: June 4, 2009
Date of Diagnosis: March 21, 2014
Earned Her Wings: February 3, 2016

Ethan Max Williams

Date of Birth: August 8, 2001
Date of Diagnosis: December 3, 2008
Earned His Wings: January 28, 2010

Ethan Perkins

Date of Birth: July 2, 1997
Date of Diagnosis: May 15, 2008
Earned His Wings: January 8, 2009

Faith Sonia Griffin

Date of Birth: November 22, 2002
Date of Diagnosis: October 7, 2007
Earned Her Wings: November 2, 2008

Franky Talley

Date of Birth: April 21, 2009
Date of Diagnosis: January 6, 2013
Earned His Wings: June 25, 2014

Garett Christopher Hall

Date of Birth: January 11, 2006
Date of Diagnosis: May 15, 2010
Earned His Wings: June 23, 2011

Gunner Henry Gman Gillespie

Date of Birth: September 4, 2000
(26 weeks premature)
Date of Diagnosis: November 30, 2007
Earned His Wings: October 23, 2008

Date of Birth: June 26, 1997
Home to Her Forever Family:
January 23, 1998
Date of Diagnosis: July 29, 2009
Earned Her Wings: March 10, 2010

Isaiah Ryan Garza

Date of Birth: July 21, 1992
Date of Diagnosis: September 28, 2004
Earned His Wings: April 1, 2006

Jack Mylam

Date of Birth: June 16, 2000
Date of Diagnosis: September 17, 2008
Earned His Wings: August 31, 2009

Jaelyn Joana Lizardi Valdes

Date of Birth: November 12, 2007
Date of Diagnosis: February 6, 2013
Earned Her Wings: January 15, 2014

Janessa Nicole Velazquez

Date of Birth: August 11, 2009
Date of Diagnosis: September 20, 2016
Earned Her Wings: October 17, 2017

Javier "Buji" Villamil

Date of Birth: April 26, 1998
Date of Diagnosis: April 13, 2009
Earned His Wings: January 4, 2010

Jeffrey Thomas Hayden

Date of Birth: October 17, 1991
Date of Diagnosis: January 14, 2004
Earned His Wings: September 8, 2004

Jordan Malave

Date of Birth: October 20, 2005
Date of Diagnosis: August 7, 2008
Earned His Wings: November 17, 2011

Jordana Fiorini

Date of Birth: January 10, 2005
Date of Diagnosis: September 2015
Earned Her Wings: January 22, 2016

Joshua Stanton Cramer

Date of Birth: May 21, 1998
Date of Diagnosis: June 27, 2011
Earned His Wings: May 29, 2012

Joshua Solomon

Date of Birth: February 5, 2004
Date of Diagnosis: August 2008
Earned His Wings: August 14, 2009

Julia Hillebrand

Date of Birth: December 15, 1997
Date of Diagnosis: August 20, 2009
Earned Her Wings: December 4, 2010

Juliana Donnelly

Date of Birth: April 2, 2007
Date of Diagnosis: March 30, 2012
Earned Her Wings: August 19, 2013

Justin Bissett

Date of Birth: February 9, 2000
Date of Diagnosis: January, 2006
Earned His Wings: June 26, 2007

Kaitlyn Marie Garcia

Date of Birth: September 15, 2006
Date of Diagnosis: February 2, 2011
Earned Her Wings: August 11, 2011

Kaylee Nichole Warren

Date of Birth: August 7, 2005
Date of Diagnosis: June 29, 2012
Earned Her Wings: March 19, 2013

Kayleigh Blair McClendon

Date of Birth: May 13, 2009
Date of Diagnosis: May 13, 2016
Earned Her Wings: November 15, 2016

Date of Birth: November 18, 2004
Date of Diagnosis: July 25, 2011
Earned Her Wings: July 14, 2012

Kenneth G. Wesley Bickford

Date of Birth: January 11, 2003
Date of Diagnosis: August 03, 2010
Earned His Wings: October 17, 2010

Lauren Hill

Date of Birth: October 1, 1995
Year of Diagnosis: 2013
Earned Her Wings: April 10, 2015

Date of Birth: July 1,2008
with twin Brady Cooper
Date of Diagnosis: May 4, 2014
Earned Her Wings: April 6, 2015

Lindsey Steltenpohl

Date of Birth: February 16, 2005
Date of Diagnosis: April 13, 2010
Earned Her Wings: August 18, 2011

Lucas Harashima

Date of Birth: May 24, 2011
Date of Diagnosis: September 17, 2016
Earned His Wings: March 21, 2018

Lyana Lee Stevens

Date of Birth: July 11, 2011
Date of Diagnosis: March 10, 2017
Earned Her Wings: January 6, 2018

Lyla Nsouli

Date of Birth: December 24, 2008
Date of Diagnosis: August 13, 2011
Earned Her Wings: January 24, 2012

Marc "MJ" Apodaca Jr.

Date of Birth: October 2, 1995
Date of Diagnosis: April 9, 2007
Earned His Wings: February 8, 2008

Marlee Rae Flynn

Date of Birth: July, 25, 2008
Date of Diagnosis: December 15, 2016
Earned Her Wings: January 4, 2018

Max Glezos-Chartoff

Date of Birth: September 6, 2004
Date of Diagnosis: June 10, 2011
Earned His Wings: April 29, 2012

Max Lacewell

Date of Birth: June 2, 2003
Date of Diagnosis: October 29, 2008
Earned His Wings: July 4, 2009

Meg Wasley

Date of Birth: April 11, 2002
Date of Diagnosis: February 25, 2010
Earned Her Wings: January 10, 2011

Meghan Farina

Date of Birth: February 27, 1995
Date of Diagnosis: September 28, 2007
Earned Her Wings: July 13, 2008

Mia Ylana Flores

Date of Birth: April 2, 2011
Date of Diagnosis: December 8, 2016
Earned Her Wings: June 26, 2017

Date of Birth: June 7, 1974
Date of Diagnosis: November 20, 1985
Earned His Wings: February 2, 1986

Date of Birth: July 5, 2000
Date of Diagnosis: October 22, 2012
Earned His Wings: October 29, 2012

Mikey Czech

Date of Birth: January 6, 1997
Date of Diagnosis: January 6, 2008
Earned His Wings: September 7, 2008

Molly "Molly Dolly" Little

Date of Birth: September 10, 2008
Date of Diagnosis: June 17, 2014
Earned Her Wings: May 24, 2015

Nathan Andrew Waggoner

Date of Birth: August 18, 1992
Date of Diagnosis: May 8, 2008
Earned His Wings: March 19, 2010

Nathan Jensen

Date of Birth: January 15, 2003
Date of Diagnosis: March 18, 2010
Earned His Wings: July 8, 2011

Noé Lemos

Date of Birth: May 19, 2004
Date of Diagnosis: November 1, 2011
Earned His Wings: September 24, 2014

Noelia Hurtado

Date of Birth: December 3, 2008
Date of Diagnosis: February 22, 2011
Earned Her Wings: February 5, 2012

Oliver Young Palmer

Date of Birth: July 11, 2001
Date of Diagnosis: December 23, 2009
Earned His Wings: February 16, 2012

Olivia Asia Bicknell

Date of Birth: October 6, 2010
Date of Diagnosis: June 22, 2016
Earned Her Wings: May 19, 2017

Peyton Rudkin

Date of Birth: August 30, 2004
Date of Diagnosis: November 26, 2010
Earned Her Wings: October 23, 2011

Rebekah Bunting

Date of Birth: July 31, 2004
Earned Her Wings: August 10, 2013

Santiago Buther

Date of Birth: October 28, 2010
Date of Diagnosis: November 28, 2018
Earned His Wings: January 17, 2020

Saphir Visser

Date of Birth: February 28, 2006
Date of Diagnosis: December 17, 2015
Earned Her Wings: August 18, 2016

Savannah Audrey Cash

Date of Birth: June 10, 1993
Date of Diagnosis: January 8, 2008
Earned Her Wings: May 22, 2008

Date of Birth: August 11, 2000
Date of Diagnosis: September 2010
Earned His Wings: July 27, 2011

Valentina Bravin

Date of Birth: December 31, 2006
Date of Diagnosis: July 21, 2011
Earned Her Wings: July 12, 2012

Yelenis Salcedo

Date of Birth: July 9, 2002
Date of Diagnosis: October 17, 2014
Earned Her Wings: October 25, 2015

Zamora Moon

Date of Birth: September 24, 2007
Date of Diagnosis: June 15, 2015
Earned Her Wings: June 17, 2017

Alexander Jonathan Montes was one of DIPG's youngest victims. Born February 15, 1994, he received his diagnosis on December 12, 1997 at the age of three and a half years old. "It all happened so fast," said his mother, Nereida Perez, who remembers her son as a very smart boy who talked early and picked up on things quickly. "I remember the night he was sick. He had flu like symptoms. In my mind I thought, 'ok...he gets medicine and I take him home.' Never did it cross my mind that I was going to lose my son to this deadly cancer." Jonathan had wanted a bicycle for Christmas that year and though his parents bought him one, he was never able to ride it because of a weakness on his left side. He suffered the effects of DIPG for just over seven months, during which time Perez and Jonathan's father, Robin Alexander Montes, threw him a memorable Power Ranger-themed fourth birthday party where Jonathan dressed as his favorite character, the Red Ranger. Jonathan also received a package of Mickey Mouse books from Disney when it became clear he was never going to make it to their theme park like he had wanted. "For a little boy, he was so strong and optimistic that he would be ok," said Perez. "He always told me I shouldn't worry." Jonathan died on July 27, 1998, before his sister and brother were born. His parents make sure that Jonathan's legacy is felt in the family. "We used to blow bubbles and he used to say that bubbles and balloons were angels," said Perez, who released white balloons at Jonathan's funeral. "So whenever we have an occasion, we always have 'balloons for Jonathan.'"

 She was born in Santander on February 26, 2000 and since then she was characterized as an extremely happy girl. As one of his teachers told us, he had the most infectious laugh he had ever heard. With a strong character and an iron will, he always achieved the small and large objectives that were set during his short but intense life.

 

When she was 6 years old, during a family vacation abroad, Alicia began to show some strange symptoms, such as extreme tiredness, awkwardness when walking or sporadic vomiting that we initially attribute to the effects of a long trip for her age.

 

Seeing that the symptoms were getting worse, the same day we returned home we took her to a hospital center to be evaluated. After an emergency scan, we were told that he had a brain tumor, but it was two days later, on August 21, 2006, when in the Sant Joan de Deu Hospital in Barcelona they gave us the worst diagnosis that we could face: Alicia had a diffuse brain stem glioma (DIPG), a highly malignant, inoperable cancer for which there is no curative treatment today. The life expectancy for children affected by this tumor is about 12 months.

After such a terrible and devastating diagnosis, we began to look for possible treatments in international reference centers. None gave us any hope and

It was at the Sant Joan de Deu Hospital itself that they offered us a  novel and experimental treatment  that gave us at least the possibility of fighting and trying.

Alicia's fight lasted 15 months . He underwent radiotherapy, chemotherapy, rehabilitation ……. but she always kept the strong and fighting spirit that characterized her. It was she who encouraged us to start activities, go out to dinner, go to the movies,…. never gave up. During those intense months, he saw his cousin born and shared his first year of life with her, he finally had the dog he loved so much, he visited Florence and the Tower of Pisa, he learned to read and write, and so many things they would do an endless list.

Alicia left us on November 21, 2007 but she will always be present among her family and in the memory of all those who had the privilege of meeting her.

Aubrey Anne Bonnichsen
 Forever 15
 Dec 15, 1995 - Feb 18, 2011
 http://kinkadefunerals.com/obituary.php?id=708

In the spring of 2009, Aubrey was noticing she had double vision, constant headaches and stomach aches, plus her hearing in one ear was hindered.  While on family vacation the beginning of June we noticed she was falling a lot, was vomiting randomly and tipping her head to the side when she looked at things or talked to people.

As soon as we returned home from vacation, we took her in for an eye exam and the eye doctor said her eyes were fine but that an MRI should be done. Just days later, we were in our family doctor’s office to learn the results of the MRI. Aubrey had a fairly large tumor at the top of her brainstem and would need to see a Neurologist in Rapid City.  From there it was a whirlwind as we were then referred to Denver Children’s Hospital to be seen by Neuro-Surgeon Dr. Ken Winston. We had one day to pack and prepare for Denver.

On June 27, 2009, Aubrey underwent an open craniotomy to biopsy the tumor. On June 30, it was confirmed that Aubrey had a Diffuse Pontine Glioma or DPG (DIPG) for short. It is at the top of the brain stem and it "diffuses" into the pons of the brain. The pons deal primarily with sleep, respiration, swallowing, bladder control, hearing, equilibrium, taste, eye movement, facial expressions and sensation, and posture. There is no known cause of this cancer or prevention of it. There is no known cure for it. Because it "diffuses" through the pons of the brain,  it is inoperable. It would be similar to putting a drop of ink in a glass of water then trying to get the ink out. Currently the only treatment available is radiation and chemotherapy to help improve quality of life before the tumor begins to progress again.
 
Aubrey underwent 6 weeks of radiation treatments 5 days a week.  The entire family stayed in Denver during this time. Just 3 weeks after being home she needed to start 6 rounds of chemotherapy because symptoms were returning.  Once Aubrey completed chemotherapy she did very well for a period of time. She was able to go on a Make-A-Wish cruise to the Caribbean towards the end of February 2010.

After being in hospice care for 6 months, on February 18, 2011 Aubrey flew into the welcoming arms of her Savior surrounded by her loving family and close friends. We've learned a lot about life from Aubrey. She enjoyed life and inspired us all.  She will always be our hero!

Brooke Elizabeth Healey passed away from DIPG six days after her fifth birthday and almost nine months after her date of diagnosis. She was incredibly close with both of her siblings, loved having fun and acting silly, and maintained her positivity even in the face of adversity.

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.

Ten Months ago our world as we know it fell apart. My family and I received the horrible news that our precious little boy had a very large Pontine Glioma and would die. We held on to our faith until his very last breath, and did everything in our power to try to save him! My son was such a special little boy. Since the day he was born we knew he was different. He just required so much love and attention, and we always made sure we gave it to him! He was like a little man. I remember one day, I cut my hair, but just the ends, so no one really noticed, but my Juju said, " Mommy, nice hair cut you look pretty!" that meant the world to me! He was so full of life! Even throughout the long ten months of his battle, he never let that beast get the best of him! He always kept a smile on his face, always laughed, and was a very silly goose! Juju loved Thomas The Train and Lightening McQueen from "Cars". The "Make A Wish Foundation" did his room make-over and turned it into the most beautiful "Cars" bedroom, which he never got to enjoy. He carried all of his toys in what he called his "treasure box" or a bag, and never left the house without every single toy that was special to him! He slept with his toys at night and would wake up in the middle of the night to make sure they were still right next to him! My little angel was definitely sent to us from above! He was so different and so special! He has touched so many people's hearts and I know he will continue doing so! I can't wait to see him again in Paradise! I look forward to helping find a cure to this horrible disease that has taken away our children's lives!

God Bless you,

Francheska Gómez,
Juju's Mommy

Caitlin Downing was a pioneer in the DIPG community as she became the first patient in Dr. Mark Souweidane's clinical trial. She was a beautiful young girl who loved to smile, go to school and put bows in her hair before she earned her wings on November 11, 2012.

COLTON WAS DIAGNOSED WITH DIPG JANUARY13,2009.HE WON HIS BATTLE AND TOOK THE HAND OF JESUS ON OCTOBER 31,2009 AFTER A BRAVE BATTLE.HE WILL BE MISSED BUT HIS LEGACY WILL LIVE ON.

WE WILL MISS YOU LITTLE MAN

WE WILL LOVE YOU FORALWAYS AND EVER.

We knew colton had been sick for a while but family dr just kept coming up with normal childhood illnesses, until daddy mentioned he said he had a headache, everything is happening so fast, and colton is so tired for the last few days, we are not sure if it is the steriods they have him on, or the fact the maybe he is getting some relief from his headaches and can finally rest, or if it is the cancer itself, colton tanner will be 4 on feb 2nd 2009, he was diagnosed on jan 13, 2009 with a rare type of brain cancer, the dr suggests less than a year, there is a new phase one clinical trial that is under way and colton has been excepted, they have had great success with it so far, , we will be leaving missouri on jan 19th for st jude in memphis, prayers needed for colton, family and the dr's who will be treating him, i will be going with mom and dad, what a lucky g-ma i am to have this special time with him, we want to personally thank all those who are reaching out to colton and family,,,,,, to the family, the friends, co-workers,teachers, the yet to be friends, the prayer chains and all those who will touch our lives during this time , for all your kind words, prayers, thoughtfulness and compassion,,we are eternally grateful, i am not sure about computer access in memphis but will find a way to keep this updated and add photo's, g-ma margaret welch Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

it is time to update our story.the type of tumor that colton was diagnosed with is called a diffuse intrinsic pontine glioma(dipg).it is avery rare tumor.less than 200 per year and it is also inoperable.colton's is fairly large about 4.5cm.it covers his whole entire pons and diffuses also into his midbrain and medulla oblingota.they have him on a phase 1 trial of a chemo medication called vandetanib whichtargets certain block cell receptors called vascular endothelial growth factor receptor and epidermal growth factor receptor.these receptors send signals to tumor and blood vessels to divide and grow.this drug has been tested in adulys with cancer(other forms)and there is evidence that vandetanib can cause tumors to shrink or atleast stop growing.this is the first time they are using it in children.hopefully it works.colton is on the highest dose for this phase and then it will go into a phase 2 trial.so they have had some success with it some children are 15 months out from there diagnoses with out any evidence of the tumor growing back so far.paired with the radiation this chemo is suppose to break down the tumors defenses and and make the radiation more effective.

After reading other caring bridge sites as well as other websites i have found things that were important information for us, so thought i would add these as i thought of it, as far as the chemo medicine vandetinib colton is taking 100mg daily, and the radiation is 5 days a week at 53 grams, it is targeted radiation,i think that is the terminology, i will check with his mom and correct it if i am wrong,,, i have also noticed some similarities between coltons over all health and in other children with dipg,, such as colton was a preemie at 33 weeks, amazingly healthy, stayed 12 days in the hospital, just needed some oxygen the first few days, ever since birth he did not sleep well, still does not sleep well, he even had sleep studies done at about a year and a half of age, showed no problems, many ear infections which led to tubes in ears at about 2, that helped resolve the issue, and breathing problems, he has been on and off breathing treatments since about 2 yrs of age also, he was sent for special tests at about a year and a half because of a birth mark that was white, loss of pigmentation, will have to ask mom what they were looking for but the tests showed no abnormalities,,,not sure how relevant this is but several others with dipg were preemies and had sleep problems,chronic ear infections and such before diagnoses, adding another thought that may be of some help, coltons tumor at diagnosis was 4.4 cm x 3.0 cm at the end of 4 weeks of the 6 weeks of radiation the mri showed it has shrunk to 3.8 cm x 2.6 cm,,the chemo i believe is a 2 yrs daily course, it is oral so can be taken at home,what great news, no wonder he has been feeling better and some of the symptoms have subsided, it also helps that the steroids have been lowered to only 4mg a day,
in mid august 2009 we were told the tumor is progressing, are hearts sunk, dr bronisher at st jude discontinued his vandetinibat this time and started him on 2 mg of steriods  9/3 amanda met with dr bronisher,  does not give much hope, or medical possibilities, streriods are uped to 6mg and started on etoposide, used as palative care, hoping to keep cancer out of spine, sent home on hospice,,

 

Source: https://www.caringbridge.org/visit/coltonthurman

On January 22nd, 2007, 4-year-old Cristian was diagnosed with Pontine Glioma, which is an inoperable brain tumor located in the stem of the brain.

After the doctors examined Cristian and reviewed his MRI, we received the worst news of our lives. The tumor was inoperable and the average lifespan for a child with Pontine Glioma after diagnosis is 3 to 18 months.

Cristian fought his battle with Pontine Glioma for 2 years and a few days. Cristian's mother and father never gave up hope. They prayed that God would heal their beloved child. Cristian kept fighting against this form of cancer. He passed away on January 25, 2009, in the loving arms of his mother and father.

Cristian's story magnifies just how important the work of the Cristian Rivera Foundation truly is. That work is to find a cure for the inoperable Pontine Glioma brain stem tumor that ultimately claimed the life of Cristian Rivera. Your tax-deductible donation to the Cristian Rivera Foundation will one day find a cure for Pontine Glioma so no other family will have to suffer the grief that Cristian Rivera's family has endured.

Hello, my name is Delaney. On October 9th, 2008 (I was 4 1/2) I was diagnosed with a Diffuse Intrinsic Pontine Glioma (that's a tumor in the brain stem). Delaney won her battle, took Jesus' hand and earned her beautiful 'green' Angel Wings on 12/01/09 at 8:33am. She was 5 years 8 months old.

Please also keep Jimmy (Delaney's Step-Dad) in your prayers.  He received a cancer diagnosis on 11/13/09. As of 05/2010 he is clear, with CT Scans quarterly!

Delaney Shannon Starcher was born on 04/01/04 in Oceanside, California. She has an older sister Bailey (7), a younger brother Tyler (2), a half sister Brooke (9) and 20+ aunts and uncles, 20+ cousins. She has a very wonderful family that will be helping her throughout her fight with this terrible beast. She has a tumor located in her brain stem. Because of the size and location (it is entwined with the brain stem) there is not an option of surgery to remove it. Prognosis is very poor (average survival is 6-9 months from diagnosis), but with prayer, faith and wonderful Dr.'s we intend to fight this awful tumor with everthing we've got.

Thank you to everyone for your continued prayer and support. Laney is a very BRAVE little girl and is uplifting to everone that knows/meets her.

Please keep up the prayer chains, a miracle is what we are praying for.

 

Source: https://www.caringbridge.org/visit/coltonthurman

This is the story of a six-year-old girl named Elena. In her last days, she showed a community how to love and how to live. Written through the eyes of her parents, Brooke and Keith Desserich, as a remembrance for her younger sister, her daily story tells one of humility and inspiration as she lives each day, one at a time. In her short time, she painted a masterpiece that would hang in an art museum, accomplished a truly spectacular series of wishes that she alone created and inspired a cause that continues today to help children everywhere in their fight against brain cancer.

This is Our Elena...

She is simple. She is our Elena.

Source: http://www.notesleftbehind.com/elena/

My Heart is big because I have love for everyone. My Heart loves my pink blankie. Jesus is in my Heart.

This is her story.  It all started with a stumble.  In January of 2010 she became very wobbly. She called it "wobbilitis".  On Feb. 2nd, 2010 our worst fears were confirmed, an MRI showed that she had a brain tumor - later diagnosed as Diffuse Intrinsic Pontine Glioma (or DIPG) - a rare and inoperable form of brain cancer.  On Feb. 3/10  she had surgery at Sick Kids to deal with hydrocephallus and then two days later she had the first of 30 radiation treatments at Princess Margaret.  Looking back we wonder how we made it through those first few days.  We needed to process so much information, make decisions, put our daughter's life in the hands of the medical teams at both hospitals.  Our families and friends immediately mobilized and helped and supported us in every way they could and in every way we needed.  Emma began her first of 30 treatments on Feb. 6th.   

She won the hearts of her medical teams at both hospitals and she endured all the tests, scans, radiation, MRI's, bloodwork with a sense of grace and humor. Never complaining Emma she was always concerned about others, especially other kids enduring radiation than herself.  We thought we were getting into the clear, but a month after finishing her radiation she began to lose all her strength on her left side - losing the ability to walk, write and increasing difficulty in speaking and swallowing.  It was very puzzling for us and her medical team.  After a bout of pneumonia and another stay in hospital in May and a follow up MRI, it was determined that the right side of the tumor actually inflammed due to radiation, causing the extreme weakness.  The left side responded well to the radiation and had shrunk.  

It took a toll on Emma psyche, and our families.  What was supposed to be a honeymoon period where life was supposed to return to normal, became a time of slow and painstaken recovery, with lots of visit to Sick Kids for physio and OT.  Emma was always proud to call herself a "lefty", and was very upset she no was no longer able to use her left hand.  Amazingly she has learned to use her right and is actually pretty good.  Ugo decided to take the summer off, spending time with all of us - we didn't know what the summer would bring and realized we needed to make every minute count.  As the heat of the summer rolled by, she became stronger and soon enough we were thinking about school.  A huge change for her - as she would have to attend school in a wheelchair and learn to do everything with her right.  

Sept - 7th - the first day of school and in her new pink clothes, a Happy Bunny knapsack and a Jessie and Woody lunchbox, Emma began Grade 3, with me by her side.  Her amazing friends, and their parents were so happy to see her - as well as the school staff.  For 3 weeks I sat with her until a full-time assistant was assigned, and in those 3 weeks, I saw a little girl who was able to overcome so many obstacles, and just be a little girl.  By mid-September Ugo went back to work.  It was difficult for all of us - but mostly for him as he knew that he was spending such precious time away from her.  But knowing she was in school, and he would be home a few hours after her return, we all settled into a routine.  

We couldn't have survived the last 9 months without all the love and support for our family members, so many friends, their friends, co-workers - past and present.  Her story - our story- touched so many people and continues to do so.  We know that their prayers and blessings have helped us all cope.  Our boys are settled in their routines, and comforted knowing that we're doing all we can - loving and supporting the family as a whole. 

The older journal entries are copies of updates sent out as early as the second week in the hospital.  The journals are from her perspective, stories that she sometimes tells us, things that make her laugh, and certainly those make her cry.  

Although things are fairly stable now, we definitely do not take this time for granted.  Every morning we wake up and thank God for granting us another day with her, and go to sleep thanking him for the day we've just had.  

A lesson we could all probably learn from. 

To everyone - thank you - we couldn't have come this far without you.

With love

Emma and her family

Source: https://www.caringbridge.org/visit/emmab

Emma earned her wings on February 3, 2016, serving as a stark reminder that no matter how far we've come in the quest for a cure, we are not there yet. Emma was a beautiful 6 year old girl that loved art, family and her friends. She will always be a source of strength for us all.

Ethan was diagnosed with a brain stem tumor (Diffuse Intrinsic Pontine Glioma) on 12/03/08, which he bravely battled for 14 months.

Around Thanksgiving of 2008 we started to notice some odd changes with Ethan.  He was walking like he was intoxicated and his speech was slurred.  To watch TV he was putting his head down and to one side, only looking with one eye. 

On Monday, December 1, 2008, I took Ethan and Jacob, his brother, to have them looked at by their pediatrician.  Jake had been having stomach pains.  A CT Scan revealed that Jake had appendicitis and emergency surgery was performed that night at AI duPont Hospital for Children.  

Ethan was referred to a Pediatric Neurologist.  

The next day I took Ethan to see the neurologist.  He had him do a few coordination tests.  He then advised that he would like to do an MRI and that the MRI office that is attached was staying open for us until they finished the MRI.  He then told me that he wanted me to bring Ethan's father in first thing in the morning for the results.  I told him that Jacob was probably getting released so I was not sure what time.  He said to come in whenever we can, he will make sure he is there.  So Ethan very bravely laid perfectly still for his MRI with contrast.  He had to have an IV but did a great job.  

The next morning Mike and I brought Ethan to the Doctors office.  He told us the worst news we could ever have imagined.  Ethan has a brain tumor.  He could not give us an exact diagnosis but that he was admitting Ethan to AI duPont immediately and that the Neuro Oncologists there would be waiting for us.  We were stunned.  

Jon was in Georgia getting ready to leave for a 20-day trip overseas.  Thank goodness I called him just before the plane left and he was able to come home.  

That night we were given the official diagnosis.  Diffuse Pontine Glioma (sometimes referred to as Diffuse Intrinsic Pontine Glioma) DPG or DIPG.  

Ethan was a very happy 8-year-old boy and loved to play baseball, tell jokes, read, play games, and cuddle with his dogs. 

He was a huge Phillies fan and was ecstatic when they won the World Series in 2008. 

Ethan was a 3rd grader at Allen Frear Elementary School, Camden Delaware. He loved to do math, read and write stories. 

Ethan has 14-year-old big brother Jacob. 

Ethan completed radiation on 01/30/09. 

Ethan took Temodar from December 2008 - October 2009. 

Ethan received Avastin bi-weekly from October 2009 until January 2010. 

Ethan passed away peacefully with his parents and step parents by his side on January 28th, 2010 at 7:45 pm.

Ethan was able to give the Gift of Life in the form of the donation of his kidneys and corneas to patients in need and of his liver for research of the effects of chemotherapy and his tumor for research for new understanding and treatment of Diffuse Intrinsic Pontine Glioma. 

The recipient of both of Ethan's kidneys was a man in his 50's from Illinois who had been on the waiting list for over 3 years.

The recipients of Ethan's corneas were two different men from Pennsylvania. 

 

Source: https://www.caringbridge.org/visit/ethanmaxwilliams

The week of Oct 1, I had been limping slightly on my left foot/leg (though nothing hurt me.) The same week, I had vomited twice, I had sensitivity to light and sun when I woke up and I seemed to be a bit emotional (crying) for no apparent reason. On the morning of Sunday, Oct. 7th, my parents new something wasn't right, so they took me to Joe DiMaggio Children’s Hospital to have me checked out. After series of questions and a neurological examination, a cat scan of the brain was immediately done and a mass was detected. A 3 hour MRI of the brain and spine was done later that evening. The tumor was on the stem of my brain and thank God the spine was clear. To no one’s understanding, except for God above, I was diagnosed with an inoperable brain stem tumor called diffused intrinsic pontine glioma.It is malignant, aggressive and it is attached  to a major artery in my brain. Thanks to my parents, aunts, uncles, family and friends they have found the very best team of physicians to try and help me. I know they will leave no stone uncovered. We are off to NYUMC and my medical care will be led by Dr Jeffrey Allen (Director of Pediatric Neuro-Oncology), Dr Sharon Gardner(Assistant Director of Pediatric Neuro-Oncology), and Dr. Ashwatha Narayana (Associate Professor of Radiation Oncology). I will be at the Stephen D. Hassenfeld Children’s Cancer Center daily for the next 6 weeks undergoing treatment which includes 30 rounds of focal radiation to the stem of my brain to try to disolve this monster. 
My cure, my miracle, and my healing will be from GOD THE FATHER. 

I ask everyone to please keep me in your prayers. Please ask GOD to give myself, my family, and everyone who knows me, the strength and resilience to endure and win this battle. My Mom, Dad, and Aunt Michelle will be keeping you up to date through this website.

God bless and thank you for caring and loving me enough to help me beat this. 
        Faith 

Source: https://www.caringbridge.org/visit/faithgriffin

Hope Fuller was the daughter of Deb & Jay and the sister of JD. She loved swimming, acting, running, shopping and music (especially Taylor Swift). She was involved with her school band, playing the saxophone. She was an accomplished singer in her hometown’s “Youth Chorale” and was in her school’s choir.

Hope was extremely intelligent, achieving straight A’s during her last year in middle school.

She was blessed with so many wonderful gifts. Possibly the greatest of them were her big heart and her concern for others. When she was younger, she and her friend Grace were walking around their hometown square where they met a homeless woman. They came home and decided to operate a lemonade stand to raise money for her.

Hope also ran a lemonade stand in an effort to raise funds for the local food pantry. And when she heard that her uncle’s business was slow she told her parents she wanted to have a car wash fundraiser to help him out.

Her acting career started in 2007 with roles in many school and community youth theater groups with her favorite being the lead in the play “Mulan.”

In 2008 Hope joined the cross country and track teams at school, following in her big brother’s footsteps. Hope also had a great passion for food and if you didn’t know better, you’d think she was Italian. Pasta or anything with noodles is what she would prefer for breakfast, lunch and dinner…

“Sauce on the side, please.”

Source: http://ladnerweb.com/alwayshavehope/who-was-hope/

As everyone knows Isaiah was special. He always wanted everyone to be happy. He wanted to make a difference in this world. I know he would have gone on to be someone great. Isaiah had a certain quality to him that made him unique. He had lots of friends and he still does. Everyone loved to be around him. It was like you were drawn to him. You don't get to meet someone like him everyday. So please cherish the memories you have of him and know that he loved all of you!

 

So this is how it all began and from this day forward life would never be the same:

September 27, 2004 Isaiah had a doctor's appointment because he was complaining of his left hand and foot getting numb. The doctor couldn't make a diagnosis so she made an appointment for an MRI the following day, September 28, 2004. Isaiah got the MRI and we went back to the doctor to get the results. While at the doctor's office I didn't think anything was going to be wrong but when she asked if I wanted Isaiah in the room or if I wanted him outside so she could let me know the results, I knew it wasn't going to be good. While Isaiah waited outside I was told that he had a brainstem glioma. An inoperable brain tumor. I just remember crying and crying and I started feeling guilty. I thought it was my fault for my son getting this horrible disease. The doctor let Isaiah in the room and I got him and hugged him so tight and I kept telling him that I was sorry. I really thought I lost it. Why my son? Why not me instead? It wasn't fair. My mother, Lorraine and Scott came to pick us up from the doctor's office. I think I was crying the whole way home. When we got home all my family had come over to see Isaiah and to let us know that they would be there for us. The following morning the doctor called me and told me that she had talked to a neurologist from Loma Linda University Medical Center and they wanted me to take Isaiah over there right away. I got my son and we left no hesitation what so ever. Isaiah stayed in the hospital for about a week. They got everything ready for him to start his radiation and his chemo. Six weeks of proton radiation along with chemo (Temodar). And then a second phase of Temodar for 10 months. Through out all of this Isaiah never complained. He showed us all how brave and courageous he was. A true hero in my eyes. I was truly blessed to have such a wonderful son. There will never be anyone like you Isaiah. I will cherish your life forever.

Source: https://www.caringbridge.org/visit/isaiahryangarza

Javier "Buji" Villamil was born on April 26, 1998 and diagnosed with DIPG almost 11 years later on April 13, 2009. His mother Rosemary Lora and father Gabriel Villamil first noticed that their happy, energetic and self-motivated son had a problem when he complained of not being able to see the blackboard, even after moving up to the front of the class. Even after receiving glasses, Buji - who was very athletic, playing in pee-wee league baseball and the all-star basketball team - was unable to see the ball until it was right in front of him. An MRI confirmed the worst. "It was a hard blow but as far as we were concerned, it was just an obstacle," said Buji's parents. "Our motto was 'This too shall pass.'" For the next eight and a half months, Buji's parents made the most of their time with their son and tried everything in their means to help him get better. Unfortunately, this young boy who loved sports, George Lopez, iCarly and Scooby Snacks fruit snacks passed away in the living room, with mom and dad by his side, on January 4, 2010. "Seeing him fall asleep for the last time was heart-warming. He didn't go out in a struggle," Buji's parents explained. "We were always very proud of him and never disappointed. He fought until he couldn't fight anymore. We explained that we loved him and that God loved him, and he died in peace."

Visit http://www.jthf.org/

Joshua lost his battle with DIPG in 2012, but he continues to inspire us to raise awareness and fight for a cure. Joshua was considered an “old soul”, wise beyond his years. He was the epitome of generosity and was always concerned with the well being of others. Like every child, Joshua enjoyed sports, video games and spending time with his friends. His happiest moments were with his family.

My name is Joshua Solomon. In August of 2008, I was diagnosed with a inoperable, incurable Brain Stem Glioma, a type of brain tumor.

My parents took me to St Jude Children’s Hospital, where I received radiation and chemotherapy for 6 weeks.

In December of 2008, my first MRI since the treatment showed the tumor to be almost non-existent.

Then like a thief in the night, the tumor came back in May 2009. I lost the ability to talk, swallow, walk and many of the body functions so many people take for granted.

Not quite a year after my diagnosis, the Lord called me home to take my rest . Before this tumor I was just like every 4 year old boy and I loved Thomas the Train.

My mommy and daddy are committed to helping save another child’s life by working very hard to raise money to find a cure for this ugly beast of a disease.

This website will tell you a little bit more about Brain Stem Glioma, Diffuse Intrinisc Pontine Glioma, also known as DIPG, the type of tumor I had.

I encourage you to make a difference and become part of finding the cure.

 

Source: http://joshuaswish.org/joshua.html

Remember Julia Hillebrand: http://www.paulhillebrand.com/towards-jesus-video-tribute-to-julia/

Juliana earned her wings on August 19, 2013, serving as a stark reminder that no matter how far we've come in the quest for a cure, we are not there yet. Juliana battled DIPG for almost 17 months. Juliana had a gentle soul and was wise beyond her years. She has become a source of strength for us all.

At the age of five Lily LaRue Anderson was diagnosed with Diffuse Intrinsic Pontine Glioma, commonly referred to as DIPG, on May 3, 2014. She battled with her “Boo-Boo” for 11 months, during which time she touched the lives of thousands from all over the world who came together to support Lily and the Anderson family. Despite enduring a daily pill regimen, weekly blood draws, and everything else that came with it, Lily never stopped enjoying her love of comedy, animals, music, and life itself. Through it all Lily continued to bring smiles to the faces of everyone she met. Lily lost her battle with DIPG on April 6, 2015.

We continue the fight in her name by supporting the Lily LaRue Foundation. Fundraising information and events hosted by our generous community can be found here, on Hope for Lily LaRue and Love For Lily. 

Thanks for spreading Lily's story, sharing her light and for your boundless love! #beatDIPG #TeamLilyLaRue

Source: http://www.lilylaruefoundation.com/about.html

LINDSEY ANNE STELTENPOHL was born 2-16-05.  She was alway a healthy, happy child.  After some very mild symptoms and a trip to the doctor for her 5 year check-up, she was referred for an MRI at Children's Hospital.  She was diagnosed with a DIPG brain tumor on 4-13-10. She was given eternal life with Jesus on 8-18-11, after a courageous 16 month battle. She will be forever 6 1/2 and she will be forever loved and missed!!
You can read more about her journey in our background story and previous journal entries.  You can also leave a note of encouragement for her family, as we try to put one foot in front of the other and move thru each day without her.This page is maintained for my beautiful, sweet and loving 5 year old daughter.  We found out on 4-13-10 that she has a tumor on her brain stem.  This was obviously very shocking news.  We have rec'd such an awesome outpouring of Love and Support over the past few days, it really is unbelievable!  I have followed people over the years thru caringbridge and have really enjoyed the ease with which I could stay up to date on the situation.  So when I realized exactly how hard it was going to be to keep everyone equally informed in a timely manner, I felt this would be the best way.  That way I have all the info from you in one place and vice versa.  When I have information on our journey, I can post it so we all stay up to date at our leisure:)  I hope you all choose to follow Lindsey and continue to lift her up in prayer.  I just have to believe that this is going to be remembered as a horrific beginning to a beautiful story.  As I sit here now watching my beautiful, innocent child sleep, I wonder how we got here!!!  I have said it many times over the past 3 days, this can't be real?!! How can I make this go away but the reality of it is, that it is here and we have to take care of it the best way we can, with the best help we can and with the utmost faith that we will find a happy ending.  There is no other acceptable outcome for my child!  I hope everyone finds this helpful in keeping tabs on the situation and it helps me to get on my soap box or vent a little, which helps keep me from breaking down about the situation as it sits right now.  I so look forward to the days where I am posting very positive messages about how unbelievable her recovery has been and how she has defied the odds!!

We have been asked so may times how someone could make a direct donation to Lindsey's cause. If you feel compelled to do so, please see link below and it will take you directly to paypal to make a direct donation.  Thank you in advance.

Source: https://www.caringbridge.org/visit/lindseysteltenpohl

Lucas Harashima was a 5-year-old boy with so much promise. He was an
energetic and social child, always looking to make friends and share a smile. Lucas enjoyed Martial Arts and enjoyed spending time in the dojo with his brother, Kai. Martial Arts training taught Lucas the importance of discipline, teamwork, and strength. Lucas used that strength to battle DIPG and fought valiantly. After 18 months, Lucas lost his battle, but his family picked up his fight and continue to raise awareness and money for DIPG research.

Lyla was born at 5pm on Christmas Eve, December 24th 2008. She had a natural delivery free of complications and was assessed as a totally healthy newborn baby. She immediately fulfilled all our hopes for our baby as new parents and our dreams for her future were set alight.

The first girl in a family with two generations of boys, she was doted on from the start by all of her family. As an infant, she spoiled us as parents by being a very easy, happy and relaxed baby. As soon as she could smile, she always had a friendly , engaging reaction to any new or familiar face that would peer down into her pram or cot. She grew big blue eyes, a huge toothy smile and a head of wild, curly hair her paediatrician once described as "spun gold". We would rarely walk down the street without having someone smile at her or comment on her hair.

She was a normal, healthy gregarious child, full of energy who talked very early and who has always loved to sing and dance. Lyla would entertain any visitor to our home with her exuberant singing and dancing to The Wiggles or her favourite Monkey Music or Barney songs, as well as her "yoga" somersaults and stretches on the kitchen floor. She loved to dance with her "Dadda", and anyone else she could pull onto their feet, when her music request was playing loudly at home in the kitchen.

She would often ask for "French music" and saunter and swing in the arms of her obliging father. As soon as she could speak, she demonstrated an amazing ability to remember the words and melodies of many songs and would often recite them as they popped into her head at any moment. We can recall being stunned to discover that at two years old she was singing along, word for word, to songs on the radio while driving in the car. At the age of 2 years and 3 months, she was able to spell her name and read most of the alphabet. By the age of 2 years and 9 months, Lyla was able to recite her mother's mobile phone number and her home address.

Lyla also showed an early love to interact with people and a particularly strong affection and fascination for other children. She would be gripped with curiosity when she saw another child and would linger nearby until she was able to strike up a conversation or hold a hand. Alongside this affinity for others developed a strong sense of independence.

Lyla was never a fearful child and was always keen to try new things and do things on her own. She had a huge desire to explore her surroundings and was never one to sit still and play in one spot. Even in her much loved group music classes and gym classes, Lyla was always the one child who wouldn't sit in the circle with the others when there were places to discover and new objects to play with.

Her constant desire to be on the move and get into anything and everything meant that we were always on our feet chasing after and making sure she didn't get herself into trouble. She never needed encouragement to try something new. Lyla was always known for her extremely strong determination to do everything herself. "I do it! I do it!" was one of her most used phrases. Lyla also had a strong sense of mischief and a great sense of humour and fun from an early age. She loved to tease and be teased, to be goofy and silly and to be chased and chastised for her naughty behaviour, shrieking with laughter while shaking her head of huge, wild, curly hair. She was always fearless and when she would fall or trip instead of crying she would just look at us, smile and say "BOING"!

One of the few things that she would slow down for was to admire and collect one of her favourite things - flowers. In fact, there is little debate that "flower" was her first word. She would see flowers everywhere and point them out to whomever she was with. And she wanted to pick them anywhere she could. In one of our favourite photos of her, she is 18 months old and sat alone in a field of daisies in Hyde Park, content in a world of her own.

When she mercifully did develop a greater desire to sit still, it was apparent that she also had a huge love of drawing and painting. In the course of her illness and her treatment, this became a huge source of comfort for her. She loved to sit and paint and draw and adored having her face painted. When she asked others to draw, or got her face painted, her request was always for flowers and butterflies, and always in pink.

In the months before her diagnosis there were some changes in Lyla. Looking back now, these changes may have been early indications that something was wrong, but she was in her "terrible two's" stage and becoming aware of the arrival of a new sibling, so it was difficult to relate them to a sinister illness. Even the experts in her disease agree that there is no way to distinguish this behaviour as something other than normal under those circumstances. Whatever the reason, these changes were a definite cloud over her usual self. She suddenly became more clingy and anxious around strangers and fearful in social settings.

In reality, we had no indication that something was wrong until the devastating diagnosis made on August 13th, 2011 in France, while on our summer holiday. We had just spent a wonderful holiday on the beach in Spain with her young cousins (whom she adores) and we woke up early on August 13th, 2011 to catch a flight to Nice. We remember how she came out of her bed with the biggest smile and in the best mood but we quickly noticed that she was dragging her left foot but did not complain of any pain or discomfort.

We decided we would look up a local doctor when we arrived in France later that day, but after a short flight, only hours later, we were alarmed to see it had worsened, and took her straight to the hospital emergency room. An MRI was done within an hour of doctors assessing her and determining that her entire left side was weak. After she returned from her scan, we waited in a room with a sedated Lyla, for more than a hour, after being told that a neurologist was coming to speak to us about "abnormalities" they had discovered. It was an excruciating wait full of panic and overwhelming fear and anxiety.

However, this was nothing compared to the horror of being taken away from Lyla, down a dark corridor, to a small doctor's office, and told by two strangers that Lyla had Diffuse Intrinsic Pontine Glioma (DIPG), an untreatable, incurable, inoperable, aggressive brain cancer. That she was expected to only live months. The words were like painful, physical blows, difficult for the mind to assimilate and causing such extreme anguish that our reactions range from numb disbelief to absolute hysteria. In that moment, our lives changed forever.

As parents, we did everything we could to hide the reality of the situation from Lyla. However, as her illness rapidly took hold of her, she clearly knew and felt something was very wrong. We brought her back to London within days of her diagnosis and a week later, commenced her six weeks of radiotherapy. In the week before commencing radiotherapy, it was shocking how quickly Lyla was being affected by her illness.

She became extremely lethargic and unable to walk or move much. She could not move her left arm and her right eye could no longer move beyond a certain point as the tumour damaged the nerve. Even the look in her eyes changed completely. She was also on a high dose of steroids medication which gave her manic mood swings. She would lie on the couch and stare, gloomily and glassy eyed or sleeping for hours.

The only thing rousing her would be the desire to eat, her appetite greatly over stimulated by the steroids. Her emotions ranged from depressed to angry to highly anxious and irritable. At night, she would wake almost hourly, distressed and often desperate for food. Once radiotherapy (RT) began, she needed to fast from the early hours of the morning to have her daily general anaesthesia for each RT session. So, not being able to eat, being manic from steroids, and suffering the symptoms of her tumour, and not understanding why, made her nights brutal.

Of course, over time, she began to understand, accept and dread her daily routine of the drive to the hospital, the nurses' checks, the General Anaesthetic room the unpleasant injections and gases and the canula I.V. needle bandaged to her hand each day. Lyla's intelligence and perceptiveness of the situation made her very sad, pensive and deeply distressed about the prospect of each day.

When we would try to make her laugh or smile, she would turn her head and say "I don't want to smile, I want to cry". The six weeks endured for her radiotherapy were absolute, heart-wrenching, agony. Each day brought fear, pleading, screaming and hysteria and rage from Lyla and total anguish and heartbreak for us. She gained 20% of her body weight in two weeks, grew excessive amounts of facial and body hair, lost almost half of her beautiful hair in a ring around the back of her head and ears, and the skin on her neck and ears burned, peeled, cracked and bled. She was bruised from having daily injections and blood taking, and bore scars on her breast and neck from a Hickman Line (a subcuteaneous IV catheter surgically inserted under the skin to direct injections into the vena cava) that had to be prematurely removed after ten days when she suffered a raging infection that forced her to stay in hospital for a week with a blood transfusion and daily antibiotics.

Lyla's eyes became dull, heavy and sad. It was as if their lights of joyful exuberance and childish innocence, were completely dimmed and darkened.

Despite the suffering she endured during radiotherapy, Lyla's tumor remained stable for only two months during which time we traveled with Lyla to her favourite beach holiday, swam with dolphins on her birthday and went to Disneyland Paris. Shortly after her third birthday, we were informed that her tumor started growing aggressively again. Lyla’s condition deteriorated very quickly and she experienced the awful symptoms experienced by DIPG children (loss of ability to stand, sit up, speak, etc).

Lyla passed away in the early hours of January 24, 2012 in the arms of her parents. We miss her terribly. She was truly our pride and joy.

 

Source: https://www.lylansoulifoundation.org/about-lyla/

Max was known by his nickname, “Little Dude,” but there was nothing “little” about Max and how he touched so many people in his short life.

When he was five, he started Kindergarten … and was so excited about going to the same school his big sister attended. Max, was a vibrant little boy who loved Star Wars, Legos and sushi. Two days before Halloween, at the age of five, he was diagnosed with one of the rarest, deadliest, and most aggressive forms of cancer- Diffuse Intrinsic Pontine Glioma (DIPG). Less than 10% of the 100-150 kids diagnosed each year live beyond 18 months from diagnosis. In Max’s case, he survived only nine more months, until the fourth of July.

Out of love for Max and the determination to help other families facing this cancer diagnosis, Max’s family and friends established The Max Lacewell Foundation to bring awareness and find a cure for brain stem glioma tumors.  Over the last five years, our 100% volunteer run organization has donated over $550,000 for Lurie Children’s Hospital of Chicago with the hopes of  ultimately establishing a research scholar dedicated to DIPG.

Max lives on in the hearts of the many people he connected with … and we are determined to do what we can to help find the cure for DIPG so other “little dudes and dudettes” can have more powerful weapons against this cancer.

Back in the winter of 2010, Meg was an ordinary seven year old girl. She loved to draw, play sports, dance and hang out with her big brother Jake. She also had a keen eye for fashion, spending a good amount of time each day planning what she would wear. Meg was always smiling; she was a very happy and content young lady.

Meg’s parents noticed she was falling down every so often, mostly around the house. They also noticed that she was not quite herself when playing sports and started to complain of her hearing in her left ear. The same week her parents had scheduled an appointment at their Pediatrician’s office, a couple of Meg’s teachers had said they noticed her symptoms as well.

Meg and her parents went to get an MRI after the Pediatrician said she was noticing some neurological deficits. Meg’s parents would learn that she had a brain tumor and that she needed to be transported to Duke Medical Center immediately. Later that same evening, a Doctor communicated the diagnosis – a Diffuse Intrinsic Pontine Glioma (DIPG). 
 
DIPG has been called the worst news a Doctor could give a parent. It is a tumor that grows among the nerves within the brainstem. Because of this, surgery is not an option as the brainstem is responsible for vital functions such as breathing, swallowing and movement. It affects approximately 200 children each year. The prognosis for Meg was that she would live for nine months to a year.

After a few surgeries to place a shunt and port, Meg started out on the standard course of treatment – six weeks of radiation and chemotherapy. Children typically respond well to radiation in that, the tumor shrinks and their quality of life is greatly improved. This normally lasts for months but eventually the tumor comes back. Research has been unable to find an effective treatment for the recurrence of the tumor.

Meg and her family set out to live life to its fullest and that is what they did after Meg’s treatments. Some of Meg’s adventures included: a trip to the beach, a Disney Cruise and a trip to New York. Her favorite adventure was a trip to Los Angeles where she starred on Kimora – Life in the Fab Lane. She was also adopted by the Duke Women’s Lacrosse Team, attended a Taylor Swift concert in style, had a fashion themed birthday party and met Paul Teutul from Orange County Choppers.
 
While Meg was living out her dreams and adventures, Meg’s parents knew the clock was ticking. In September 2010, they received the news they feared. Meg’s tumor had starting progressing. Meg began a clinical trial at Duke and after a few months was pulled off as her symptoms continued to progress. Desperate to try to get some relief for their daughter, the family traveled to Rhode Island for a second round of radiation. They would spend the three weeks just prior to Christmas there for treatment. Through Christmas and New Years, Meg seemed to be about the same. In the first week of January 2011, Meg complained of a stomachache. Meg had come down with an infection, common in children whose treatment lasts as long as Meg’s did. Three days later, Meg passed away in the Hospital with her Mom and Dad holding her. She was not in pain and spared the prolonged agony that this tumor produces in so many cases.
 
Meg’s journey was one in which no child should ever have to endure. Yet, she did so all the while keeping her grace, humor and beautiful smile. She never complained or asked – why me? Her parents asked themselves – how can we honor Meg’s memory and spirit properly?
 
While in Rhode Island, Meg was treated to a shopping spree by a Foundation organized to make children happy while battling serious illness. The Founders have a daughter who passed away with the same type of tumor. As part of her shopping spree, Meg was given the opportunity to brighten another patient’s day with some gifts. Meg said that this made her feel real good inside.
 
With that, Meg’s Smile Foundation was born. Meg’s parents wanted to channel the generosity and energy from all of their family, neighbors and friends to putting smiles on the face of children with serious illness.
 
During Meg's illness, the Duke Women's Lacrosse Team adopted Meg and always took time to do special things for her. Two of the players stopped by to visit Meg, and became Meg's back-up singers during this very memorable performance of Taylor Swift's, "You Belong With Me.". This is a video we all cherish. Enjoy! 
 
Source: https://www.megsmile.org/Megs-Story

Meghan’s amazing sense of humor is the first thing you’ll notice about her, next to her warm smile. Although she only was given 13 years with us, in those 13 years she filled everyday with laughs and love. Even after she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare childhood brain tumor located on the brainstem, her personality was unchanged. Meghan joked with all the nurses and doctors, and kept my family positive in a time that was not. Her perseverance in the difficulty that was thrown at her was and is truly inspiring, refusing to give up. One memory that paints a picture of her wonderful sense of humor and tremendous heart was when she was asked by the Make a Wish Foundation if she had a wish. She could ask for anything in the world, but asked for a dozen Krispy Kreme donuts. My dad asked her if that was all she wanted, and she responded, “Okay… TWO dozen donuts”. She ended up asking to go to the filming of High School Musical 3, but they didn’t have room. When told that she wouldn’t be able to go, my sister apologized for taking too long to decide. This is how my sister was; genuine, giving, hilarious, and strong; and she refused to let this terrible disease change that.

Source: https://www.womensactivism.nyc/stories/3507

James Michael “Mikey” Czech was born on January 6, 1997. The younger of two children, Mikey was a happy, athletic, intelligent, caring, perpetually optimistic young man with boundless enthusiasm. He loved to run fast, work hard, listen to The Doobie Brothers, play his favorite sports of baseball and tennis and was a huge New York Yankee and Roger Federer fan. Mikey was a loving brother and son whose laugh was contagious and who had a huge smile that lit up a room and captured your heart.

On January 6, 2008, his 11th birthday, life as our family knew it, ceased to exist. Our only son was diagnosed with a diffuse intrinsic pontine glioma (DIPG), one of the most aggressive and deadly forms of brain tumors diagnosed in children between the ages of 3 and 16. DIPGs are inoperable, incurable and, until recently unable to be biopsied. Approximately 80% of patients diagnosed with DIPGs die within one year of diagnosis; Nearly 100% die within five years of diagnosis. Conventional treatment consists of general radiation and chemotherapy. Alternative treatments include various clinical trials (approximately 250 over the past 30 yeaers) which, to date, have proven no more effective than conventional treatment.

On January 24th, 2008, after seeking advice from five different medical institutions, Mikey was enrolled in a Phase II clinical trial of Motexafin Gadolinium at The Stephen D. Hassenfeld Children’s Center for Cancer & Blood Disorders at NYU Langone Medical Center. He also concurrently completed six weeks of IMRT radiation. Mikey’s treatment ended on March 6th, 2008. Throughout his treatment, Mikey never complained. He wanted to be a normal kid, playing baseball and football and planning parties for his friends. He simply wanted to be “Mikey”.

On April 17th, 2008, the first post-treatment MRI indicated that Mikey’s tumor had shrunk by 70%. Mikey’s second post-treatment MRI on July 17th, 2008, indicated that Mikey’s tumor had shrunk another 15% for a total of 85%. We were very hopeful, especially since Mikey was feeling better and was able to do everything he had done before he was diagnosed. He was in good spirits and we thought we were managing the tumor. He had a wonderful four months after his treatment ended. Unfortunately on August 1st, 2008, cysts began to form in the area once inhabited by the cancerous tumors, placing pressure on Mikey’s cranial nerves. He started to feel numb on his right side, couldn’t walk and was starting to have problems swallowing.

On September 7th, 2008, our beloved Mikey lost his battle and died unexpectedly at his home from complications associated with his brainstem tumor. He will forever be loved and missed by his friends all over the world, his family and by the community he loved so much.

Mikey was an inspiration to everyone who met him and who learned of his fight with cancer. The community embraced him because of the strength and courage he portrayed during his struggle. He was often referred to as an "Old Soul" because he possessed wisdom far beyond his 11 years. During the duration of his illness, Mikey never gave up hope. He was a perpetual optimist and a fighter. His motto was that he would "Never, Never, Never Give Up!"

His family and friends are committed to continuing Mikey’s inspiring legacy by establishing The Mikey Czech Foundation. The goal of the foundation is to establish the world’s leading neuro-oncology translational research lab and to help cure pediatric brain tumors, particularly DIPGs. By working side by side, we will find a cure.

Source: https://www.mikeyczech.org/mikeys-story/

Nate was such an active kid. He loved being outside, played many sports, and spent most of his free time fishing at the family cabin along the Missouri river.

On May 8th, 2008 at 15 years old, everything changed.   After complaining of "funny head pains", an MRI confirmed Nate had a Diffused Intrinsic Pontine Glioma (DIPG).  This is a non-operative tumor in the brain stem.

DIPG being a rare brain tumor, not many options were available.  Nate started six weeks of radiation and also took a chemo pill. The tumor did shrink, relieving his symptoms. This lasted for about five months, then balance issue started to show up. On October 31, 2008 a port was put in and a new chemo was started. Periodic rounds of steroids were also given. The new chemo routine helped Nate live pretty much symptom free for the next 10 months. He even obtained his driver license on his 16th birthday.

Later that fall, symptoms returned and at an alarming pace. Nate was experiencing numbness in his feet and his speech started to slur.  Nathan slowly lost his walking ability, then his hands, then his speech, and eventually it started affecting his breathing. All this happened while his cognitive thinking was normal, which for Nate and his family, was the worst part. 

Without any other chemo options, the next step was a clinical trial in Chicago. Weekly commutes started for the clinical trial. This new treatment was no help and the tumor kept progressing. After eight weeks the clinical trial was stopped. Nate passed away five weeks later, on March19th, 2010. He fought a long and hard battle for 22 months.

“He is such a fighter and he just fought.  He was always smiling,” said Monica Waggoner, Nathan’s mom.

Read more about Nathan's story here:  https://www.facebook.com/Forever-Nate-183826536927/?fref=ts

Source: https://www.teamjackfoundation.org/hero/nate

Nathan was diagnosed with a brain stem tumor (DIPG) on 3-18-10 and lost his battle and was healed in Heaven on 7-8-11 at age 8. 

This all started with Nathan having issues with his speech then starting having issues with his balance and weakness on his left side starting in his leg and then moving to his arm. We got a call after lunch from school about the progressed weakness on Thursday and took him to the ER.  There after getting an MRI, we found out he had a tumor in his brain and we were transferred to the U of M Children's Hospital that night. 

Over the next day or so, we found out more information and the planned action for treatment.  We had radiation for 6 weeks and an Oral Chemo (Zolinza).  

Next, we took part in a clinical trial in Pittsburgh, PA for a vaccine therapy.  Our first visit will be June 6-7, 2010 and we will return every 3 weeks as the treatment is effective.   

As of mid August, the story has taken a major detour.  Nathan started having increasing leg pain and the doctors decided to do a spinal MRI on Aug 10.  In this scan, Nathan was found to have another tumor in the spinal canal at the base of his spine. Nathan had surgery on Aug 12 to remove as much tumor as they could. Unfortunately this means that we are no longer able to participate in the Pittsburgh trial (we went 3 times).  Nathan's original diagnosis was confirmed with the pathology of the spinal tumor.  

As of Aug 31st, we are back in radiation again for 6 weeks for full spinal radiation with an extra boost where the tumor is.  He is also getting Zolinza again.  

In mid-late Oct, Nathan started experiencing headaches and dizziness which prompted us to move up his MRI a week or so.  We found that he has 2 small new tumors just outside the brain stem.  One is very close to the nerves heading out to his ear which was causing the symptoms.

At this point, we changed treatments.  We started Avastin (IV) and Ara-C (spinal tap) along with uping the steroids again.  We got a total of 3 Avastin doses and 2 Ara-C doses before things changed again.

The day before Thanksgiving, Nathan started having pretty bad headaches and an eye tracking issue.  

Then on Sat, Nov 27, Nathan's dad Troy passed away very unexpectedly of an asthma attack which turned our world upside down yet again at the time that Nathan and I need him the most.  Along with this, I am about 4 months pregnant with our third child due in May 2011.  Nathan also has a 5 year old sister, Allie.

Back to the medical journey, Nathan's symptoms have been up and down since the end of Nov.  The decision was made to change treatments again. We are getting Temador (Oral), Irinotecan (Oral) and Temserolimus (IV) in 21 day cycles - 1 week on two weeks off.

Nathan declined pregressively starting the beginning of 2011.  He was in the hospital most of the second half of Jan and at that point lost his ability to walk.  He had surgery to insert a shunt during that time as well.  His cerebral tumors have also continued to spread.  Through Feb he was in and out of the hospital as well.  From March - July I would say he was pretty stable with a slow steady decline.  He slowly lost his speach, his ability to use his hands, then his arms.  

His baby sister Becca was born on 5-18-11.

At the end of June, Nathan developed an infection.  We tried to foght this but it continued to get worse.  We wound up on numerous IV antibiotics that we were giving at home and had him on a morphine pump. 

On July 2, we took Nathan to the hospital for a red cell tranfuction as his hemoglobin was low - little did we know he would never come home again.  Throughout that next week Nathan was up and down.  As little as 24 hours before he died, the doctors thought he could have a couple of weeks.  Very suddenly, he started having breathing secretion mgmt issues.  At about 2AM on July 2nd we called everyone to come.  He survived until 5PM.  He passed peacefully and was no longer in pain and was free from DIPG in Heaven with God and his daddy. 

Please learn from this and live life to the fullest with no regrets.  The past is history, tomorrow is a mystery, all we have is today which is a/the 'present' so enjoy it.

May Nathan rest in peace and enjoy being cancer free in Heaven and teaming up with his daddy to be the best guardian angels ever.  They will be missed greatly by those that loved them.

The Jensens
Trisha, Troy (Forever 35), Nathan (Forever 8), Allie & Becca

Source: https://www.caringbridge.org/visit/nathanjensen

Ten-year-old Noé Lemos battled DIPG for three years, exhibiting a courage and strength that belied his young age. He was an avid world traveler and a true friend, worrying that everyone was ok and happy even as he fought for his life.

This is our beloved 3 year old baby girl.  In February 2011 she was diagnosed with a brainstem glioma called diffuse intrinsic pontine glioma. 

Noelia fought bravely through radiation treatments at St. Jude, but lost her fight to this horrible disease a year later in February 2012.  As her entire family grieves her loss, your prayers and positivity are always welcome and appreciated!

Thanks for visiting Noelia's page.  We need all of your love, support and prayers-

My name is Noelia Sofia and I am forever 3 years old.  Mommy picked Noelia as my name because I was born in December around Christmas time.  (Noel ~ Noelia)  Mommy is Cristina and daddy is Roberto.  I have a brother, Christian, and a sister, Alexandra, and lots of extended family that loves me very much.  My mommy created this page for me!  She picked the butterflies because my sister Alex used to call me Mariposa before I was born.  Mariposa means butterfly in Spanish. 

In February, my babysitter and family noticed that I was limping when I walked and then mommy noticed that I was not using my right hand.  After three visits to emergency rooms, they did an MRI on February 22, 2011 and found a brainstem glioma.  I was diagnosed with DIPG or Diffuse Intrinsic Pontine Glioma.  Mommy and Daddy were very scared and sad.  They did everything they could to save me including loving me and spending as much time as possible with me up to the day I could fight no more and went to heaven on February 5, 2012 to rest.  I know they miss me very much as I miss them, but I am not sick anymore.  I dance and sing and play with the other angels and I know we will all be together in heaven one day.  Please keep my family in your thoughts and prayers!

Source: https://www.caringbridge.org/visit/noeliahurtado

Oliver was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) or Pediatric Brainstem Cancer on the 23rd of December 2009 at the age of 8 years old. It is a rare, aggressive type of brain cancer and is inoperable. He was given 9 - 12 months to live following diagnosis, but bravely fought his disease for over 2 years, becoming a 'long term survivor' of this type of brain tumor. He passed away peacefully in the early morning of February 16, 2012. Thank you for your continued prayers for our family as we adjust to life without his sweet smiling face...

 

Source: http://oliverpalmer.blogspot.com/

in the light with joy,
love lifted you.
As you brushed against
this world so gently,
you lifted us.

I will love you always,
my little Wee One!
Savannah Audrey Cash
1993 - 2008
"Forever Fourteen"