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UK's Parliament discussed DIPG case treated by IDOI

On November 2017, United Kingdom's Ian Murray MP (Member of Parliament) debated on Diffuse Intrinsic Pontine Glioma (DIPG) and Luke Stewart's case.

Ian Murray, MP for Edinburgh South, applied for this debate to raise awareness of DIPG, to highlight the need for more research and development, to try to get better treatments and to bring to the UK Parliament the heroic story of seven-year-old Luke Stewart, his mom, Jennifer Ure Stewart, his dad, Mark and his grandfather, Robert Ure.

For the full video go to: https://www.youtube.com/watch?v=kD9ZXXWusWE

Transcription:

When it comes to treating the tumors patients are usually offered courses of radiotherapy of between three to six weeks, and due to the dangers of operating on such a critical area of the brain, surgery, for some, is simply not an option. In the UK various studies show that chemotherapy is ineffective in treating childhood DIPGs, although it is used in innovative ways and other countries like Mexico.

Doctors advised, Luke’s Mom and Dad he could only survive six to nine months if he were to receive radiation treatment, the only option offered by the NHS (National Health Institute) in the UK. The family were informed that radiation treatment would only prolong Luke's life by a few months and make him more comfortable but that he would not survive.

The Stewart family would advise with NHS there were no treatments available worldwide or any clinical trials that could help their son and that on completion of the radiation treatment he would only receive palliative care. The family were broken by this news but they knew they had to keep fighting for Luke and started search for hope elsewhere, and they started an incredible journey to Mexico to save their son's life.

This gave the Stewart family renewed hope. They researched the entire program which is called intra-arterial chemotherapy whereby they place catheters into the base and femoral arteries and systematically deliver FDA-approved (U.S. Food and Drug Administration) drugs into the brain stem. They have also combined this treatment with dendritic and T-cell immunotherapy. The Stewart family left for Mexico at the beginning of May, when they witnessed Luke's condition deteriorating rapidly. This was the only hope they had to offer Luke at this time.

When Luke arrived in Mexico, Mr. Deputy Speaker, this family it made him the seventh child worldwide to receive this groundbreaking treatment. He was also the second child from the UK. makingDIPGhistory.com is the website where people can see more about this condition and indeed the history of it.

Luke's clinical condition on his arrival Mexico was extremely serious. This once active, confident and independent little boy couldn't walk properly, was constantly falling over, was always tired and his previously happy demeanor had changed completely.

The family spent four months in Mexico. During this time Luke received six IA (intra-arterial chemotherapy) treatments and four immunotherapy treatments. During this period of time Luke's clinical condition improved dramatically. He was outgoing, happy, walking without any risk of falling over, running, playing with his brothers, communicating normally with his family.

In the time that Luke had been receiving this treatment, his tumor had shrunk the cancer, the cancer activity was low, his new cell generation was high, his cyst has shrunk and become pure fluid. His clinical improvement means that he can live a life as a 7 year old, and in laws that he is 11 months past diagnosis, a point at which the NHS said he would not survive. 

Mr. Deputy Speaker as if it were a miracle, Luke is now back at school. It is too soon to tell, but Luke's improvement is an enormous step in the right direction.