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The Pacific Pediatric Neuro-Oncology Consortium (PNOC) is a network of more than 20 children’s hospitals
that conduct clinical trials of new therapies for children with brain tumors with the mission to identify personalized treatment challenges.

PNOC was formed to provide children with brain tumors access to individual and personalized treatment based on the molecular biology and genetics of each tumor.

Participating hospitals include:

  1. Children’s Hospital Los Angeles (CHLA)
  2. The Children’s Hospital of Philadelphia (CHOP)
  3. Children’s National Medical Center (CNMC)
  4. Johns Hopkins Hospital
  5. Children’s Hospital & Research Center Oakland (CHRCO)
  6. Dana-Farber/Boston Children’s Cancer and Blood Disorders Center (DFCI)
  7. Nationwide Children’s Hospital (Nationwide)
  8.  Doernbecher Children’s Hospital Oregon Health & Science University (OHSU)
  9. Jude Children’s Research Hospital (St Jude)
  10. University of California, Los Angeles (UCLA)
  11. University of California, San Diego Rady Children’s Hospital(UCSD/Rady)
  12. University of California, San Francisco (UCSF)
  13. University of Utah(UTAH)
  14. Seattle Children’s Hospital (Seattle)
  15. Louis Children’s Hospital
  16. Texas Children’s Hospital
  17. University of Minnesota/Masonic Cancer Center
  18. UF Health Neuromedicine Hospital
  19. Ann & Robert H. Lurie Children’s Hospital of Chicago
  20. The Children’s Hospital of Philadelphia
  21. SickKids Hospital

PNOC is running clinical trials like nanoliposomal irinotecan and immunotherapy vaccine (H3.3K27M) for Diffuse Intrinsic Pontine Glioma, modified measles virus for recurrent medulloblastoma, Everolimus for recurrent or progressive low-grade gliomas, Vemurafenib for children with recurrent/ refractory BRAFV600E-mutant gliomas.

To find out if your child is eligible to enroll in a PNOC clinical trial you have to contact the closest participating site.

Sometimes as parents we have a difficult time in finding the right words to explain our children about the therapies they are getting
and we wonder if there is a simple or interactive way to explain them.

So here is Jake,  an animated eight years old boy created
by The Brain Tumour Charity that can help you explain your child about treatments used
in the management of brain cancer like neurosurgery, scans, chemotherapy, radiotherapy, and steroids.

About Neurosurgery

Scans 

Chemotherapy 

Radiotherapy

Steroids

Raining in my heart is a documentary released the last November of 2017 by real stories,

of three children who enrolled in cancer research clinical trials in Britain.

With all the conventional treatment exhausted, these kids are offered to try immunotherapy.

Sophie Ryan-Palmar (12 years old), whose cancer came back four times,

Fabian Bates (11 years old) diagnosed with Leukemia and

Chloe (3 years old) who’s Neuroblastoma has spread throughout her body.

This documentary follows these children and their families for 2 years,
giving them space to talk about their feelings and emotions as well as the decision-making process during this battle.
This documentary honors these heroic children who are helping discover new cancer treatments
and helps by raising awareness on this subject and offering hope to other cancer patients.

You can watch the full documentary here:

 

Chloe’s parents created a diary and they are sharing a lot of their battle on her Facebook page, to read more about her story click here.  

 

Part of an integrative oncological treatment is to take care of all aspect of our children; music is a powerful expression tool that reduces anxiety, depression, and pain, it can also help the children to cope better with hospitalizations.
In Music therapy, the intention is to promote health by using music experiences including instrument play, movement, singing, etc.

In this video Ryan Judd from The Rhythm Tree shares with us, an interview with Catherine,
mother of Zoe who was diagnosed with a brain tumor and after the surgery music therapy helped her a lot to work out with her emotions.

For Ryan, Music therapy is honoring the child spirit and improving the quality of life.

Consider complementary methods in this road since it can bring a lot of benefits in the quality of life of a child.

Dr. Jonathan Finlay, from Children’s Hospital of Los Angeles is an expert and a thought leader
in brain tumors in children which can not / should not be treated with radiation therapy.
From CHLA’s website:
Expert in treatment of children, adolescents and young adults with brain tumors, especially young children with treatment strategies that avoid radiotherapy; children with medulloblastoma; other PNET, germ cell tumors, ependymoma, gliomas (low grade and high grade) and choroid plexus carcinomas

Vomiting in the morning is an early sign for a possible brain tumor.

Neuroblastoma- Harvest as many stem cells as you can, as early as you can.
Since this process will slowly become impossible,
while the need may grow.
Stem Cell transplant
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