January 21st is a day I hate with a passion. A day I would erase from the calendar if I could. It is the day that McKenna was diagnosed. I vacillated about whether I should write today - Dave likes to say that it's just another crappy day on the calendar. But try as we may, we really can't ignore it. Today is the day that our lives were forever defined by the timeline of "Before McKenna Got Sick" and everything after.
I wrote the following words last year, but I really can't explain any better what it is like to have your child go from seemingly healthy one day, to getting a terminal diagnosis the next. Please read....there is a family right now somewhere in the U.S. getting this exact diagnosis and feeling these emotions. This is why we need to keep working towards a cure.....
A cancer diagnosis changes everything about your life no matter what the prognosis. But when you are told that your child's cancer is terminal, that there are no viable treatments anywhere in the world, that you only have 9-18 months and you should go home to make the most of what is left, your life as you knew it is totally obliterated. Once the words are spoken, with one tick of the clock, you realize that nothing will ever be the same again. And though you haven't yet lost your child, you start grieving in that very second.
"Grief is a multifaceted response to loss...Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, cultural, and philosophical dimensions." (wikipedia)
Out of all the definitions of grief, this one struck me. "A multi-faceted response to loss." It helps explain the grief that parents like us experience even as our terminally ill child lives and breathes. For in that moment after diagnosis, you begin to grieve the loss of the hopes and dreams you harbored for your child. A future where you can imagine birthdays, soccer teams, graduations, weddings, children...it all dies the very instant you are told your child's diagnosis. Murdered in cold blood by the monster that we call DIPG.
And as the defintion states, it's not just the emotional response. There is an instant physical response to this grief (I can feel it even now as I write this). The overwhelming need to run, to unhear the words. Your stomach turns and you feel the need to vomit. The shaking and cold-blooded fear that runs through your veins as you fight the reality of what is happening.
Cognitively, your once agile mind turns to a swirling eddy. You fight to function because you know your child needs you now more than ever, but you become forgetful. You research and try to remember convoluted care instructions, even though you find it difficult to concentrate because of the incessant drumming occuring in the back of your mind - "My child is dying....My child is dying..."
Behaviorally and socially your lives change in that instant as well. You want more than anything to curl up into a ball, to hide from the world. You have trouble interacting with others, you can no longer relate to their "normal" lives. You re-examine relationships wth family and friends through this new lense. You lose friends and gain new ones. And though inside you are screaming for many of them to go away and just leave you alone, you need these people more than ever. They are your lifeline, your support. And your child needs them too, so you push yourself mentally and physically to stay connected to this world.
Culturally you find that this modern world doesn't do grief or illness well. It scares people and they don't know how to interact with you. Some are so scared or unsure that they disappear from your life rather than have to deal with it themselves. But you also find your village.....those that surround you and care for both you and your child. People whose hearts are strong and large enough to absorb the sorrow that emanates from you.
And philosophically. I don't care what your beliefs were, you question them. They are tested and changed - stronger or weaker, broken or built - whatever they become, they are not the same beliefs you had before your child was diagnosed.
All this begins to happen in that one movement of the second hand - and while it is happening you still have to do the most important thing of all.
Love and nurture your child until they take their last breath.
An enlightning and impactful article from Stanford's Child Health Research Institute highlighting the work being done in Dr. Michelle Monje's lab, the necessity of philanthropic and unresticted funding in that work (such as the money MCF grants), the importance of tumor donations, and even gives a shout out to McKenna Claire. Here are some excerpts from the article, but please take the time to read for a full understanding of the work we support at Monje lab and the barriers we still face...
"If you have to write a new grant that has to go through the normal funding cycle every time you have a new idea or a new insight, nothing would ever get done. Philanthropy and unrestricted funds from departmental and institutional support, it's not just important, it's necessary for creative, innovative work."
"Stanford now houses over a dozen new patient-derived cultures of DIPG, and Dr. Monje’s philosophy has been to freely share these cultures with the scientific community. (Separate funding from the McKenna Claire Foundation makes this distribution effort possible.) Tumor cultures are now at over 100 labs throughout the world, and Dr. Monje doesn’t care who has that eureka moment first. Finding a cure for high-grade gliomas is more important to her than acclaim."
Michelle Monje, MD, PhD is an associate professor of neurology and, by courtesy, of neurosurgery and of pediatrics and of pathology. She is a recipient of several CHRI grants, including the Anne T. and Robert M. Bass Endowed Faculty Scholar Award, and serves on the CHRI executive committee. (Photo c...
This article is notable not only for the humanitarian efffort being undertaken, but for the jaw dropping fact that over 500,000 children will be diagnosed with brain cancer this year in China.
"Executives with Wolfson Children’s Hospital, Nemours Children’s Health System and the UF Health Proton Therapy Institute signed agreements in Beijing, China, on Friday to establish a pediatric neuro-oncology program where some of the more than 500,000 Chinese children diagnosed with brain tumors each year will travel to Jacksonville for treatment."
Executives with Wolfson Children’s Hospital, Nemours Children’s Health System and the UF Health Proton Therapy Institute signed agreements in Beijing, China, on Friday to establish a pediatric neuro-oncology program where some of the more than 500,000 Chinese children diagnosed with brain tumors...
Yesterday I met with Melissa from the Pediatric Brain Tumor Foundation, the largest funder of pediatric brain tumor research in the nation that also provides a variety of support systems for children and their families from diagnosis, through treatment and beyond.
It was a good meeting where we talked of the need for better communication between researchers and foundations, and among the foundations themselves as we seek to support the most promising research. As a larger foundation with access to both entities, they are working towards developing a system that allows foundations to fund research jointly while retaining their autonomy.
We look forward to our continued work with PBTF - both in research and support at our local hospital, CHOC. Only by working together can we make the difference our children need. As always we are #bettertogether
The Pediatric Brain Tumor Foundation is the world's largest nonprofit solely dedicated to the pediatric brain tumor community. We serve the more than 28,000 children and teens in the United States who are living with a brain tumor diagnosis.
We also have a dream....that one day children diagnosed with DIPG will be given hope for a much deserved future. And so we work towards that end. On this MLK day we honor the man and his vision for all of us. Now, more than ever, this nation needs to feel HOPE. ...