Dad, Mom, Charlotte & John
(and everyone else)
Diffuse Intrinsic Pontine Glioma (DIPG)
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
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.
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. As of September 25, 2014 john has seen a 67.12% reduction in the size of his tumor since diagnosis scan on October 6, 2013. Simply a miracle.
This is the story about a remarkable boy and his journey, and how you
John Millen is a 4-year old boy and race car fan battling a rare 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. Most children with this kind of tumor survive a mere 9-12 months from the time of diagnosis.
We have been very blessed, John has responded very well to conventional radiation treatment, and CED of 124I-8H9 proved to be a miracle procedure for us when he received it under clinical trial in February, 2014.
John was approved by the IRB and FDA for a second surgery at Memorial Sloan Kettering and on November 13, 2014 and became the first patient to receive this treatment again under an experimental special use protocol.
This is an amazing time of healing for John. He is doing well, has returned to school and we are waiting to see what kind of results we will see from the treatment over the next few months. We are also still in in crunch mode as we wait to see what the medical expenses will actually be from this trip. Relocating the family to NYC for a month was quite a cost in itself, but now we wait for the real paperwork to begin.
Recruit a Crew
John loves racing, so we’re waving the green flag on his journey. We’re asking you to recruit a crew! Find 10 friends to donate $10 each. When you take the checkered flag in your crew’s John’s Journey 100, you help a special boy get the critical help he needs. The rally car is on the track, so please help in any way you can.
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