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November 19, 2010 – August 21, 2015

Diagnosed: October, 2013

Written by John’s family

John Millen3Our son, John Austin Millen, is a 4-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 is now more than 20 months past diagnosis, beating the odds.

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 20, 2013.  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 (MSKCC) 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’s tumor was considered non-progressive, yet it still shows signs of malignancy.  As of September 25, 2014, John had seen a 67.12% reduction in the size of his tumor since diagnosis in October 2013, which was simply a miracle.

On November 13, 2014, John participated in a second round of this experimental treatment.  John was the first person ever to have this procedure twice.  With the positive results we had seen thus far, we were hopeful that this treatment would further help John in his fight and provide the much needed information for research.  This procedure was considered “off-trial” and experimental.

In June 2015, we headed back to MSKCC to enroll in a clinical trial involving a PD-1 immunotherapy drug called Pembrolizumab.  Before our trip, we had seen some increased symptoms, and we unfortunately confirmed through an MRI that John’s tumor is progressing.  For folks who don’t know, “progression” basically means that the tumor, which we have kept stable for so long, is growing back.  And in John’s case, it is growing at a moderate to aggressive rate, and the tumor is now measuring almost as large as when he was first diagnosed.  This is a big change from an MRI just one month earlier where the tumor was still stable.

This is not a slow moving cancer for those who don’t know DIPG. Typical progression prognosis is between 1-3 months, and there is no elegant way to put it folks, It’s downright horrible, for the child and for the families.  We have a very optimistic neuro-oncologist at MSKCC that believes that this trial drug will start attacking the cancer aggressively and that we should see some improvement by the next scan in early August.  We aren’t giving up hope or faith, any more than we had on the day he was diagnosed. But, the reality is we may have very limited time to enjoy everything we can with John before some really nasty symptoms set in.  With faith as the cornerstone of our home, we have built a network of support around us. I’ve never been completely naive that this day wouldn’t come. I just prayed it wouldn’t be for a very long, long, long time.

There will be a lot more weekly trips to New York, followed by trips every 3 weeks.  It is going to be hard, it’s going to be lonely, it’s going to be scary for all of us, and it’s going to be costly both on the wallet, and on our time together.  And the treatment really might be hard for John.  Or it might save his life.  Once again, we will be one of the first with this type of tumor to start down this path.

John Millen2Our 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.  For now, we are having as much fun as we can, trying to keep things as normal as possible for everyone. John must never be in pain, must never be afraid, and must always know that mommy and daddy love him.  

John, Age 4, died on Friday August 2, 2015 at Memorial Sloan Kettering Cancer Center in New York City after a 22 month battle with a DIPG brain stem tumor. (Source: Buffalo News)




What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

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