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, is a 3-year old boy battling a rare and inoperable brain stem tumor
called DIPG – Diffuse Intrinsic Pontine Glioma. This tumor is cancerous and located in a part
of the brain that controls vital functions. Primarily children are afflicted with this type of
tumor and are given a grim prognosis of 9-12 months survival from diagnosis. John has surpassed
his one year anniversary and continues to stay strong and beat the odds….which is why we need your help


John presented symptoms the first week of October, 2013.  He was admitted and diagnosed at
Women and Children's Hospital in Buffalo and 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.


In February of 2014, John took part in a trial, being conducted at Memorial Sloan Kettering Cancer Center by Dr. Mark Souweidane, where he underwent a procedure involving surgery that provided a way to inject a cancer fighting drug directly into the tumor. Amazingly, upon completion of the trial and
almost a whole year later, John tumor is considered non-progressive, yet it still shows signs of malignancy. 


On November 13, John will be participating in a second round of this experimental treatment.  John will be the first person ever to have this procedure twice.  With the positive results we have seen thus far, we are hopeful that this treatment will further help John in his fight and provide the much needed information for research.  This procedure is considered “off-trial” and experimental, meaning at this point, the research team coordinating the effort has told us the procedure can cost between $40k-50k.  We are uncertain, due to the experimental nature of the drug and the delivery system if or how much of the procedure might be covered by insurance.  What we do know is that it will not be covered by the research grant that funds the original clinical trial like it was last time.


We are looking for your help to raise funds for medical and family expenses during this uncertain yet exciting time of research and hopeful
healing for our son John.


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

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 Memorial Sloan Kettering in NYC on September 25th with GREAT NEWS.  John's MRI shows No tumor Progression! But it does still show malignancy, or living cancer cells.  We haven't gotten them all yet.

We are currently awaiting a second surgical procedure on NOVEMBER 13 to implant via CED more of the experimental drug 124I-8H9.

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, FMLA leave,  and our expenses to travel and stay in NYC during the procedure and recovery period.


We need your help!