WHAT IS THE NEWS?

As of right now Ella is stable.  She is still in a coma, but her seizures are under control and her vital signs are all good.  Tomorrow she goes back in for surgery to have an internal shunt put in.  This is a small tube that will connect from the top of her head, under the skin, and down her neck to her abdominal cavity where it will empty excess spinal fluid, that is currently causing the swelling that has put her in this coma.

Ella

Once this happens we will be able to get her into a wheel chair, still in a coma mind you, but in an upright position we should be able to give her body enough new stimulation to break her from this coma.  Lets hope that happens.

We did get some very troubling news last week, when we had a meeting with all of the neuro surgeons and her oncologist (cancer doctor).  A test from her spinal fluid before she went into surgery, came back positive for cancer cells.  Although the tumor itself had not spread into her brain or spinal cord, it had released cells which is not good.  We thought we may have gotten away with having a small radiation treatment to mop up the cells left at the tumor site, but we know now that Ella will need much more radiation and this will come at a cost.

She will have growth and cognitive limitations for the rest of her life.

The little girl that I saw that day, almost 40 days ago, being wheeled into surgery, will not be the one we wheel out of this hospital.  Not that she would have been the same little girl anyway, but the realization that my sweet and sassy daughter, will need help for the rest of her life to do some of the most basic things we all take for granted, is all too real now.

That is one thing that is not only hard to do but also potentially very unhealthy, when confronted with a tragedy such as this.  To go into denial and make-believe that all will be ok, everything will go back to the way it was.  I can’t do it, I want to have hope and optimism, but that requires a firm grip on reality and knowing all the facts, the negative and the positive, this is essential for me.   The unknown is far scarier than the worst known anything, and I for one hate that sort of limbo.  Which a lot of this experience has been.

Limbo.

If they came to us and said “Ella is untreatable and she will die”  then I would emotionally have no choice but to except this and start to deal with life without my love, my daughter, my everything.  Not that I would last long in that world, I unlike a lot of people whom may have the strength to carry on, would not want to continue living and would surely hasten my death.  If my only purpose on this earth was to have a child and raise this child to be wiser than myself, so as to evolve our species towards more understanding as to why we exist in the first place, then failing at that basic duty, would be nature saying to me “sorry guy, your genes ain’t the genes we want”.  I would have to respect nature and except defeat.  Finding any joy in life after this would be impossible and why would I want to suffer?

If, however, the doctors came to us and said “yep, she will wake from the coma, be completely cured of cancer and have a productive and normal life” then I would have hope, of course, and these day to day obstacles, such as seeing our daughter lifeless in a hospital bed, wouldn’t be so draining cause I would know that one day she will get up out of that bed and hopefully cure cancer (or at the very least not become an exotic dancer).

But we are all stuck in limbo, we don’t have any definitive prognosis from our amazing doctors, and daily we go from extreme sadness to hope, about 1,000 times.  No normal sleep patterns, no normal anything.  Just being in a hospital is not normal.  How many times have you been in a hospital?  Now, was it a positive experience?  Imagine that every day, for who knows how long and add bills and zero joy to the equation.

No I can’t say zero joy, because each email I get from a stranger expressing their sympathy, does bring us all joy.  Every $10 donation, every local business that offers to donate a meal or a haircut, makes us feel love, makes us feel good.  We all know that none of you can cure our baby girl, if you could you surely would.  But your show of compassion is a cure of sorts, it cures us of alienation and the feeling of being the only ones in the world suffering from this disease.  The stories you all share with us don’t fall on deaf ears, we understand your pain and suffering, and maybe that is why you share in the first place.

I don’t have much in common with non-cancer experienced people, anymore.  I know what it’s like to have a child stricken with cancer, and although I recently thought there was no market for a person like me, I now know differently. I get to share this experience with all of you, the good and bad.  And if you have experienced this in your own life, then you and I become instantly connected. We can now talk the talk with one another, and we don’t have to say much to completely understand what it is we’re expressing.

And if you haven’t been affected by cancer, then you get to read my words, and because you are already an intelligent and compassionate person (I thank your parents) you see the pain, you attempt to feel what we feel by drawing upon some suffering you have experienced in your own life, and you now have a better understanding of what millions of people are experiencing right now, across our planet.

And this understanding makes you connected to Ella.  One day she will read the kind words you sent, and she will see that you helped her loving parents as they sat diligently by her bedside.  She will see the donations you made, she will know that they helped her family pay bills so they could stay by her bedside. She will know that it wasn’t just the love of her parents that gave her the strength to push on past her disabilities and achieve the life she dreamed, but the compassion from you that lifted her parents up on those days when they could not feel sadness or hope.

Those days in limbo.

She will have hope, because you gave us hope, and for that, we love each and every one of you.

Thank you for saving the human race, one incredible six year old at a time.