Our happy, loving, energetic, amazing little boy
Dad, Mom, Charlotte & John
(and everyone else)
Diffuse Intrinsic Pontine Glioma (DIPG)
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
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!
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.
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.
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.
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.
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?
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!