The Hard Truth About DIPG – Feb.15/18

Diffuse Intrinsic Pontine Glioma.

Sitting there in the emergency room staring at a large tumor growing out of my daughters brain stem, my thoughts go just as any mothers thought process would automatically go to… treatment options. What can we do? How can we make it go away? How can we save her life?

The next 24 hours of finding out more and more about this highly aggressive, extremely rare tumor was deflating, mentally and physically depleting and there are no words for the heavy feeling of helplessness I felt, and still feel… I don’t want anyone reading this to think I have given up. This post isn’t me saying “well, we tried!” and throwing my hands up, it’s more of a way to let everyone in on why I say “I need to prepare myself to what’s coming”.

Janaya has an extremely rare form of brain cancer. Any of you that have clicked the link in my last post, “The Diagnosis”, read what it is. And if you haven’t, it sucks and doesn’t get any better as you continue researching it. Diffuse Intrinsic Pontine Glioma is a nasty, aggressive bully that not only forms, but molds its way around the tissue, vining its nasty tentacles around the brain and causing increased pressure in the already cramped skull, let alone the damage it does to your nerves. This is why Janaya has been having headaches for several months… This thing has been growing inside her brain, and I just kept giving advil and cold cloths and massaging the back of her neck, thinking back at it now like “what a moron”… No, I don’t blame myself however it is hard to choke back the feeling of “I should have known”…

(Actual scans… The whiter circle in the middle is her tumor)   

(Again, actual scan… Dark grey lump the doctor is pointing at is the tumor. As a reminder, size is 5cmx4cmx4cm)

This tumor is so aggressive, it doesn’t even get the usual grading level other cancers have… It’s just bad.

Every article about DIPG states the same thing… It is rare, it has no known cure, it grows quickly and aggressively and the hardest pill to swallow: almost all DIPG patients pass away within 2 years of diagnosis, the median being 1 year. Even worse? Even those who live longer than 2 years haven’t been able to escape the inevitable fate of DIPG.. This Cancer has a 0 success rate.

There is no known case globally, in all of history, of anyone surviving DIPG. And that is a hard pill to swallow, especially as her mother.

Again, this isn’t me saying I give up. I need everyone to understand something very clearly, and this part is important. I do not know life without this child. She is and has been my everything for as long I know. My happiness, my fulfillment in life, my everything started the day this little girl was born. Struggles and all, this little girl gave me strength I never knew I had. She showed me love I never knew possible. She showed me a happiness that comes from a place I forgot was there. Janaya is my life, my everything, her very presence ignites every fiber in my DNA and if anybody wants a miracle, and believe me when I say this, it is me. Just the thought of waking up in the morning and Janaya not being there, coming home from a long day of work and not having her warm embraces to comfort me with or her sassy, way-too-mature-for-her-age remarks that catch me off guard… I can’t stop myself from crying. We just bought our house less than a year ago, and Janayas room is the only room we have really touched in the house, let alone complete. Memories of her ooze out of every corner, whether its her excorcist-style crawling across the living room floor or helping me paint the rooms, getting more on herself (and me) than on the walls… I would, and will, do anything for this little girl. But I need to prepare myself for the coming months, and HOPEFULLY years. This tumor is a bitch, and she hasn’t come to mess around…

Annually, approximately 300 people globally get this cancer… There are 7.6 billion people on this earth as of December of 2017.

It took me a long time for that to set in… Let’s add that on to the already known fact that the odds of being born with PanHypopituitarism are also extremely low, as Hypopituitarism is mostly common as a side effect of multiple different things and you develop it later in life.

The way the Geneticist who is involved explained it to me is that everyone has something called a ‘midline’, the imaginary line that divides the body into left and right halves. She said that sometimes we can get 1 disorder of the mid line, however we rarely get more than that, especially in the same area. Janaya has 2 mid line problems, 1 anterior ( Optic Nerver Hypoplasia) and 1 posterior (DIPG) in around the same level of her brain. Even better? DIPG is linked to a mutated gene she would have had since birth… So now make that 3 things she was ‘born’ with. We were told that normally they have an idea of where to look – a gene or mutation to keep an eye out for or check on. She was completely honest with me however in stating that she isn’t sure where to look (aside from the mutated defect they already linked)… The odds of having 2 mid line problems are very low, and this makes this even trickier.

I have hope that we will win this battle. Janaya is so strong and has over come so much in her short life (which I will explain in the “About Us” tab when I get it finished) that all I can do is hope that she is that 1 miracle, the child that makes history. Because if anyone can do it, it’s my little girl. But eventually, this tumor is known to start taking away pieces such as motor function, vision, speech and even memories… I need to prepare myself to when this nasty tumor takes away the pieces that make Janaya who she is, and how that is going to effect her when it does. Janaya needs me to be strong, and in order to do that I need to get ready as best I can because if I start to break, who is going to be her rock?…

Thank you everyone for your well wishes, your support and your generosity. It means more than you will ever know. For daily updates follow our Facebook page, Janayas Journey, and continue following here for more heavier stuff.

Meowt

(Watch Janayas youtube to understand the closer 😉 )

** Date the post was written was changed to allow posts to show in order **

** Originally written February 15 **

4 thoughts on “The Hard Truth About DIPG – Feb.15/18

Add yours

  1. I’m so sorry.
    I can’t get over how brave you are in your words.
    You inspire me as a mother, a woman and a human being.
    My heart is with you.
    Stay strong little girl.

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  2. I absolutely hate and cringe when I see DIPG as the diagnosis. Actually about 300 children a year are diagnosed in the US alone, estimates are 4000 globally. There is a Facebook page DIPG research created and managed by Gerry Tye (Australia) who lost his son to this beast. I encourage you to join, it is a closed group, and they ask a few questions (apparently there is a parents only page as well) but any questions regarding treatments, trials etc would be answered there. My heart aches for you and Janaya, so sad this journey has affected you. We lost our granddaughter in 2015 to this cancer and I joined the group shortly after, hugs

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  3. I’m so incredibly sorry.. what a terrible terrible diagnosis😢. Love and prayers, and honestly hold onto God as He will walk beside you like never before. ❤ This journey you will need endless grace from your loved ones and a whole lotta help from God! Lost my dear nephew a couple years ago to this beast.. we were so proud with how hard he fought ❤skylar❤. Prayers for u and your Princess❤

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