OUR John

Our happy, loving, energetic, amazing little boy

OUR FAMILY

Dad, Mom, Charlotte & John
(and everyone else)

OUR DIAGNOSIS

Diffuse Intrinsic Pontine Glioma (DIPG)

OUR JOURNEY

Diagnosis 10/6/13

What's next?

Our son, John Austin Millen turned 3 years old on November 19th.  He has been diagnosed with a brain

stem tumor called DIPG - Diffuse Intrinsic Pontine Glioma. This is cancerous and inoperable. It is

located in a part of the brain that controls vital functions. Most children with this kind of tumor

survive a mere 9-12 months from the time of diagnosis.


John presented symptoms the first week of October, 2013.  He was admitted and diagnosed at

Women and Children's Hospital in Buffalo and will began radiation treatment at Roswell Park

Cancer Institute on October 20th.  The radiation will likely shrink the tumor for a period of time;

however, this disease progresses rapidly with very few options beyond a single course of

radiation that have proven effective.


Our time is limited, our prayers are urgent and we are doing everything in our power for our

precious boy.


Initially this site was written with a tone of sadness, but today, almost a year since John's diagnosis, I have decided to remove some of the the maudlin sentiments and focus on the amazing treatments we have received, the hope we have found and the ways that each day that John is kicking cancer's ass!



How Is He Being Healed?

Maintaining quality of life is our primary purpose.  John must never be in pain, must never be afraid, and must always know that mommy and daddy love him.  And it is all in God's plan.


Women and Children's Hospital of Buffalo

John's home team of Oncology, Neurology, Neurosurgery, Psychology as well as Palliative Care/Hospice have truly been a blessing.  They have guided us from the beginning to radiation at Roswell, then opened our options to clinical trials locally and at other hospitals, as well as offered treatment options here in Buffalo. 



Roswell Park Cancer Center

John received over 30 sessions of conventional radiation at Roswell with the hope of shrinking the tumor.  With some struggles with medications, side effects from steroids, hospitalizations from severe constipation, and eventual total loss of mobility due to a near doubling in body weight in less than 6 weeks, John completed his radiation in December of 2013. The result of the radiation was very successful and was noted by his doctors and "Marked Improvement", while I preferred to hear "gone" I would have to settle with that.


Memorial Sloan Kettering Cancer Center

John participated in a phase I clinical trial at MSKCC from February 12 through March 19 of 2014.  You can read more about it here. 


REO Foundation Clinical Trial

Through the REO Foundation http://www.reo-foundation.org/ John was lucky enough to be selected as a participant in a clinical trial using essential oils and tracking his progress over 115 days.


Joules Wellness Center

John has been seeing TBA practitioner Julie Dahl which he quickly nicknamed "JuJu" since early in his diagnosis.  TBA utilizes a combination of specialized kinesiology and a sample vial kit system to develop complex homeopathic remedies for wellness.  Both of these modalities fall under the category of 'energy medicine' in the CAM - complimentary alternative medicine field. 


Where Conventional medicine doesn't have the answers, I have found that homeopathy and natural medicine seems to fill some of the gaps.....the others where

there seems to be a gap where nothing can fill the void, where do I turn?


My Faith in God

Who created us, who sustains us, and who understands us, better than we understand ourselves.  Who will never let us suffer more than we can handle.



Make a Miracle!

Kicking Cancer's Ass... and beating the odds!

our mission:

God, please bless the journey which I plan to undertake

Bracelets Are In!
Click to Order

TREATMENT UPDATE

We returned from Sloan Kettering in NYC on September 25th with GREAT NEWS.  John's MRI shows No tumor Progression!

We are currently scheduling a second surgical procedure to implant more of the experimental drug 8H9. We hope to have surgery scheduled for some time in late October - early November.

This time, "OFF TRIAL".  Which also potentially means "OUT-OF-POCKET".

Medical expenses related to this
one-time dosing could be up to $40-50k. We are still working to see if insurance will cover some of these costs,

Once again, we are rallying support to cover John's medical costs and our expenses to travel and stay in NYC during the procedure and recovery period.


We need your help!