DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Sunday, October 27, 2013

Holiday Toy Drive ~ In memory of Alicia Martin

In August of 2005, a six year old girl named Alicia was very sick.  Alicia spent a lot of time traveling to doctor’s appointments for blood work, scans and other tests.  Alicia’s body was weak and when she got a simple cold it would make her so sick that she would need to go to the hospital.  When Alicia was admitted to the hospital she would go to her room and find a stuffed animal on her bed waiting for her.  Every time Alicia went to the hospital she would take her new stuffed animal and carefully choose who she would give it to.  She would never keep them for herself.   These animals made Alicia very happy.  She enjoyed seeing them waiting for her on her bed but she also loved giving her animal to another person.
When a child is sick and has to stay in the hospital it affects the whole family.  One of the most common problems is not having enough money for hospital bills, medicine, traveling and some parents have to take time off from work making the situation even worse.  Some parents can’t afford gifts for their children at Christmas.
Christmas time is a special time for Alicia and her family.  So every year, to carry on the tradition that Alicia started, Alicia’s family and friends bring toys to the hospitals that help children.  They try to bring enough toys so that the children in the hospital will have toys for Christmas but also enough so that the brothers and sisters can have a special gift as well.
The children in the hospital cannot go shopping for their brothers and sisters.  This gives them the opportunity to give something to their siblings and get a few special gifts themselves.  Being in the hospital during Christmas is not an enjoyable thing.  These toys will help make the holiday a little brighter and hopefully put a few smiles on some little faces.

Thursday, May 30, 2013

DIPG in Adolescents- Presentation and Outcomes

ASCO starts tomorrow.   It is the biggest professional cancer meeting in the world.   There will be over 25,000 medical professionals from all over the globe to build bridges to conquer cancer.

The 2013 abstract statistics are amazing.  There were 5306 abstracts submitted from 75 countries.   Of those, 2720 were accepted for presentation at the meeting and another 2034 were additionally accepted for ePublication.   There were 172 abstracts submitted in the area of CNS Tumors and 81 in the field Pediatric Oncology.

One of those CNS abstracts happen to be on DIPGs!

Abstract: Diffuse intrinsic pontine gliomas (DIPG) in adolescents can have different prsentation but similar outcomes compared to middle childhood
Insitutions: NIH and Lurie Children's Hopsital of Chicago
Authors: Kathy Warren, Elad Jacoby and Jason Fangusaro

In this study 46 children between the ages 10-20 years of age (median 13)  were identified.   There was a female to male ratio of 1:0.77.

Symptoms: headache (39%); double vision (27%); cranial nerve issues (27%); dizziness (25%)
Two were incidental

Onset of Symptoms to Diagnosis:  2 days to 5 years (only 9 had symtoms less than 2 weeks)

Radiation: 39/42 patients had radation; 36% did not improve or got worse during riadation: 63% remained on steroids at the end of radation

Time to Progression: (n-32 for data available) 8 months median with a range of 2 months- 2.5 years; 2 alive and 1 in active treatment at time of abstract submission

Conclusion:  Adolescents are more like kids than adults with diffuse intrinsic pontine lesions with similarly abysmal survival stats.

Diffuse intrinsic pontine gliomas (DIPG) in adolescents can have different prsentation but similar outcomes compared to middle childhood

Monday, May 27, 2013

Prenatal DIPG- a case report!

On May 16th the jounal Pediatric Radiology published an unsual case report of a a pre-natal DIPG written from the department of neurosurgery and diagnostic imaging t Brown University.

In this situation a 33 year female who had previously delivered 3 children without complications had an ultrasound at 33 weeks gestation.   Unfortunately the ultrasound revealed a markedly enlarged head of a size more than 40 weeks but with an abdominal circumference and femur length of 33 weeks.   There was also triventricular hydrocephalus without evidence of spina bifida.

A fetal MRI was then obtrained which showed a mass with the epicenter in the pons extending into the midbrain, medulla and cerebellar peduncles.  The expansile mass had poor margins.  There was severe hydrocephalus.  No abnormalities were seen outside the brain.   A diagnosis of diffuse pontine glioma was made.  

The chid was delivered at 36 weeks, 4 days becaue of the big head and had Apgar scores of 7 and 9.  A repeat MRI was preformed and confirmed the prior findings.   The boy underwent placement of an extraventricular drain because of signs of increased intracranial pressure.   The child died from respiratory failure at day 3.

At autospy the lesions was found to be primarily an infiltrative anaplastic oliogdendroglioma with areas of astroctyoma grade IV differentiation.

Although I have posted on neonatal tumors in the past (click here for prior blog post), the rarity of brainstem lesions in the neonatal period makes it difficult to know exactly what to do.   Ther have been a few cases that have done well in the very young.  There are other resports of the typically horrendous course of DIPG in the neonatal period.  As researchers attempt to understand more about DIPG, this case adds to the library of knowledge regarding DIPG.  The authors sugggest that autopsy studies should be strongly encouraged to learn more about this atypical situation.   I would add that perhaps including this in the DIPG registry would also be helpful.

Prenatal MRI characterization of brainstem glioma
in Pediatric Radiology

Spontaneous regression of a diffuse brainstem lesion in the neonate.  Report of two cases and review of the literature

Lesion Regression

Diffuse intrinsic brainstem tumors in neonates.  Report of two case.

Wednesday, May 22, 2013

Meagan's Walk 2014

Well, the date has been set for 2014 Meagan's Walk!

OK, I guess  that shouldn't be a surprise as for more than a decade Meagan's Walk has been happening the Saturday of Mother's Day weekend in Toronto, Canada.   I was remiss in posting earlier about this amazing event.  Every year, thousands of people come out to for a leisurely 5K walk ending at The Hospital for Sick children.   The partipants then form a human chain all around the hospital to give the hospital and the kids a loving hug.  All this is done to raise awareness and funds for pediatric brain tumor research.

Over the years, Meagan's Walk has raised more than 2.7 million dollars for Sick Kids brain tumor research.  They directly fund preclinical research at the Arthur and Sonia Labatt Brain Tumour Research Center lead by Dr James Rutka as well as clinical care and research initiative lead by Dr Eric Bouffet.

So one might ask exactly why is this is a DIPG blog.   Yes, Meagan had a diffuse brainstem glioma.  The little girl's story is one that has been repeated again and again.   She loved life playing with frineds and cuddling every little living creature.   She died June 17, 2001 just about 7 months from diagnosis.   Yet as we with so many of our kids,  "Meagan's story is one of courage, spirit and hope."    And as with so many parents, Denise- her mom, has continued to strive to make the story different for other families.

Sick Kids has been a powerhouse of reasearch for DIPG and all pediatric brain tumors.   I am sure Meagan's Walk has been part of the reason.

Although this video is a few years old, pictures are worth more than all the words I could write here.  Hearing the story from the mom and founder of Meagan's Walk is better than anything I could say.