Back at the hospital

Due to illness, Alycia and I were away from the hospital for awhile.  Thankfully Alycia’s mother Cathi, father Mike, and husband Mark, all three took turns staying with Ella at UCSF.  Tremendous act of love and support from all three of them, and whatever issues arose between Cathi and I weeks ago, are now forgotten.  Moving forward for the sake of that little girl, helpless in that bed, and for my sanity.

Although I have just returned to the hospital after a week of being away, I did speak with one of the neurology doctors on Friday, over the phone.  I asked a bunch of hard questions, and received in return even harder answers.  You have to be careful with that sometimes, you may not always want to know those answers.  But I do know now, and I’m going to share with all of you that conversation, even though I know it will be hard for you, just as it was for me.

First off, I asked what they thought of the progress Ella has been making, opening eyes for several hours a day, new movements and so on.  The doctor said she was thrilled to see these changes, she said that earlier in the day when the team made their rounds, they witnessed Ella doing several things on command, and all noted that this improvement is promising.  She said they aren’t ready to throw in the towel, there is still a chance for Ella to regain some semblance of a normal life, although she will have a new baseline of function, they just aren’t sure right now what that will be.
There is no doubt, however much improvement Ella makes, that she will never be the same girl that went in for surgery that day, almost three months ago.  She is suffering from Posterior Fossa Syndrome, which is when part of the brain lacks the appropriate amount of oxygen, for a period of time.  In essence this lack of oxygen causes brain damage, to what extent Ella’s brain has suffered irreparable damage, we won’t know until she gets some new MRI scans.

What we do know is that 24 percent of the patients that undergo the kind of surgery Ella had, suffer from Posterior Fossa Syndrome.  We don’t know how long her brain was without oxygen, although those of us who witnessed her swelling the days after surgery, know that it was probably fairly severe.  Ella’s head and face were almost doubled in size, it was extremely hard to see.

Moat patients start to recover within weeks of suffering Posterior Fossa, and since Ella is in almost her third month, it doesn’t look good.

I asked when would we know if she’s crossed the point of no return, meaning at what month into this ordeal, do they say “ok, she will not recover, this is her new baseline of function”.  The doctor said that we should be looking at the next few weeks as being an indicator of how long she will remain locked in to this semi-conscious state, without hope for recovery.  They will reevaluate Ella and do scans in the first week of December, and if she hasn’t made substantial progress by then, the odds are not in her favor.

What kind of life is it for her to be stuck in a hospital bed, with no ability to communicate?  That is not a life, and I do not want to see her tortured by being kept alive, just because we want our daughter.  Ella got brain cancer, this was never going to be easy, but instead it’s been the most horrific experience of my life and Ella’s life, and frankly if there is no hope for her, I’d like the suffering and pain to end.  I haven’t had my little girl for almost three months now, and maybe this was a transitional period.  I don’t know what is worse, losing a child suddenly or watching one wither away slowly in a hospital.
Alycia and I have already spoken about setting up a foundation in Ella’s name and dedicating the rest of our lives to helping children stricken with cancer and their families.  We have had so much support, support that has kept us going, and to just give up on life after Ella’s death and not give back what we have received, would be doing a disservice to the memory of Ella’s life.  We have learned so much through this negative experience, it would be selfish not to turn it into something positive, to honor Ella and the short, yet amazing life she lived.

Many of you reading will say  “Glen, you just don’t  have hope or faith or you’re being too pessimistic”.  I would say to you, why in the world would I ever choose to have these thoughts, if there was another option that was based in fact and reality?  Do you think I want my only child to die?  Of course I want her to live, and truly I don’t care what her limitations are, just so long as she gets to be happy, express herself and is not dependent on others for the rest of her life.  But being stuck in a bed, with no output expression, is torture, plain and simple, that is how I see it.  I would not want to live that way, and I certainly would not want to see my child suffer in that way.

As for faith, most of you know by now that I am a Secular Humanist, I trust science and technology, not superstition.  But if you’re convinced that a divine creator gave us life and made the universe and that if prayed to hard enough, will intervene in our predestined lives, then why aren’t you guys praying harder for Ella to recover?  Obviously your god doesn’t want her to live, or you guys just aren’t asking him loud enough or passionately enough.  So get on it!

I’d love to be made a believer, by witnessing a miracle happen to Ella and for her to make a full recovery.  I’m waiting lord, give me a sign (in the form of my daughter waking up not a flock of pigeons flying over the hospital, you can reserve those miracles for Glenn beck rallies).