Our 4 year, 9 month old , son John Austin Millen passed away peacefully August 21st, 2015 at
Memorial Sloan Kettering Cancer Center PICU at 11:11pm after a 22 month battle with DIPG.
He was wrapped comfortably in mom and dad's arms and just slid gently into the loving arms of our
savior Jesus Christ.
"After he had said this, he went on to tell them, “Our friend Lazarus has fallen asleep; but I am going
there to wake him up.”" - John 11:11.
Our lord brought him into this world on a parable of comfort of John 11:19 (his birth date) and leaves us with
with the answer and miracle of his purpose here.
To show that even amidst the deadly prognosis of DIPG you can LIVE, and live strongly and pursue life aggressively and fervently each day. And we have been truly surrounded by the comfort foreshadowed when he was born.
I understand today the promise of that parable, of comfort, and of love, and what it means to truly LIVE. And our John did with every moment, with every breath that he took.
Our focus, blurred by so many tears, and yet our internal vision has never been more serene and simple. Hang on to what we have for dear life and help restore the balance that has been twisted in all of our lives by this disease for over 22 months. We need time to mourn, time to learn what life is like again, and time to learn who we are again as parents, as a mother, a father, a husband and wife, as a daughter, an only child. a newly turning 3 year old with such a drive to please and a heart that is so confused and empathetic at the same time.
But please don't leave us alone too long to figure these things out. Even though no words can ever "make this better" the silence can be deafening.
With all our love
Dawn, Chad & Charlotte
The day before he passed, our last facebook post read:
Facebook is a difficult thing. Sometimes in situations like John's it IS real life. All the family, friends, support and love rallying around you; cheering you on to better days
Then there are days when facebook is the antithesis of REAL life. The farthest thing from the reality of doctors hustling and bustling around, machines, bells, beeps, lights, needles, syringes, coded speak and hurried minds.
But facebook family itself persists the same. Wondering. Not knowing. It's like living in a cubicle office space. Someone on the outside has to see a window before anyone knows whether to take an umbrella.
That's how the past 2 days have been. These are the hardest most critical days in John's life, and they are very private, very personal, and the time is very exclusive.
But if it was really all that, would we ever have opened our lives to over 7000 followers? So,we can't selfishly hold in our battles when you fight them with us for the past 2 years faithfully.
John has been in PICU at MSKCC since yesterday early afternoon. He suffered from some acute respiratory distress after recovering from radiation therapy and we've been here since.
There are no plans to leave.
We started using a cpap machine to ease his breathing and added pain and anxiety management on constant as well as demand basis. We really didn't expect for him to make it through the night.
He did, and we removed respiratory support leaving only a rebreather at 8am. He remains comfortable but isn't conscious. But has decided for whatever reason, he still has some kind of work to do here and he's not ready to leave, even with our permission, into the arms of Jesus.
I promised 3 things to john when he was diagnosed almost 2 years ago: that he would never be in pain, he would never be scared, and he'd always know that mommy and daddy love him. Promises today I can keep, with Gods help.
Please keep calls to a minimum as we help our boy to his next position in life. Know that we appreciate the prayers, love and well wishes more than u know
Please also refrain from sending packages or cards to the Ronald McDonald house from here on, once things have settled we will be leaving promptly.
You can always read more about our John's story or donate to make a difference at www.johns-journey.org
The Millen clan
___________________________ * __________________________
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.
Diffuse Intrinsic Pontine Glioma (DIPG)
Dad, Mom, Charlotte & John
(and everyone else)
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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.