Personal grief to share (tearjerker warning)((2 yr Update))

[mshray]

I beg your indulgence my friends, this is a very sad bit of Schroeder family news, and while I'm not trying to depress anyone I'm also having a little difficulty wrapping my head around this one.

Got an email from my mom last Wednesday: the just-turned-5-year-old daughter of one of my relatives has been diagnosed with a pair of inoperable brain tumors.  Serene is only 6 or 7 weeks younger than my son Adrian, and barring some kind of miracle she is unlikely to live more than a few more months.  She is already losing motor function, in fact the symptoms that prompted the intial doctor visit were that she was stumbling a lot & had switched from writing with her left hand to her right.

I'm sharing this only because I need to let some of my sadness out.  I'm not in denial, nor angry at God, nor even very far from acceptance.   Of course I look at my own kids with a renewed sense of the fragility of life, but mainly it's just overwhelmingly sad to think on this.  My dad's only sister, MaryAnne lives in Ukiah, and her daughter Kathy is one of my favorite cousins.  She got pregnant & married right out of high school, but her daughter Elizabeth was just a wonderful & precocious child.  Graduated college with a double major at the age of twenty & got married.  Serene is her daughter, Kathy's first grandchild & my Aunt MaryAnne's first great-grandchild.  All of them will outlive her.

Just so sad.

[Gazoo]

Mark - My thoughts are with you and your family.  If it's any consolation, sometimes those diagnoses aren't quite right.  My cousin Scott and his wife had their first and only child about 1.5 years ago.  He was born with a condition called lissencephaly (sp?) -- something to do with brain development -- and was expected to live only six months.  Scott and Nancy made the decision to have the child anyway, knowing well before birth that the child would likely never speak, never walk on his own; they named him "Sef," apparently a play on a Spanish word for "a passing wind," and decided they'd give him as nice a brief life as he could hope to have.  A year and a half later, Sef is still with us: unable to speak, but fully able to respond to and enjoy stimuli around him.

I hope this helps a bit in your time of dire concern.

[mshray]

I appreciate your kind thoughts my friend, and of course we all are praying that there is some hope.  Actually there were 3 tumors, and they removed the one that they could.  At this point the only hope is that the tumors simply go into remission, which happens once in a while, but there are essentially no medical treatment options available.  Unless someone comes up with a new procedure in the remaining months.  

Our family is mostly focusing on prayer and comfort at this point.  And thanks again for your kind thoughts.

[Beej]

Sorry to hear the sad news, my friend. My thoughts & hopes are with your family.

[RGMike]

Words are completely inadequate...

[urth]

I can't tell you how sad this makes me. My sympathies to your cousin and the rest of your family.

[princessofcairo]

hang in there.

[Alicat]

My thoughts are with you Mark. Very hard to deal with. A reminder that we really do need to do the best we can with the time we have. Knowing how precious life is makes so much of the daily BS easy to dismiss.

Hope all goes as well as possible.

[ggould]

I don't think I have to tell you the lesson here, for all of us, is to treasure every day we have on this mortal coil.  Our prayers are with you, and I'm going to add Serene's name to our weekly prayer list.

Peace,
Geoff

[Gazoo]

To add to Geoff's power of faith, I have considerable belief in science where these matters are concerned.  It won't surprise me if laser surgery improves in the coming months to the point where relatively noninvasive procedures can be conducted to zap out the body's enemies.

Oooh I believe, that Fate smiled and Destiny,
Laughed as she came to my cradle
"Know this child will be able"
Laughed as she came to my mother
"Know this child will not suffer"
Laughed as my body she lifted,
"Know this child will be gifted, with love, with patience,
and with faith, she'll make her way, she'll make her way"
"She'll make her way"
-- Natalie Merchant, "Wonder"

[mshray]

It'd been precisely 2 years since I first posted this bit of sad news, but there's a pretty amazing story here.  Spoke yesterday with my cousin, and Serene just turned 7.  She has now out-lived every single other human being ever diagnosed with this extremely rare condition, and as such is the object of even more determined medical inquiry.

After 2 surgical attempts to remove what parts of the tumors were operable (read 'not much'), and some pharma & radiation regimens, the tumors stopped growing in the areas that were most seriously life threatening.  She regained her motor controls and has since maintained a perfectly normal psycho-social developmental path.  However, the tumors have completely wiped out her pituitary gland & she has completely stopped growing physically.  Her doctors (& researchers), having never had a patient survive this long, are not terribly sure what to do with her.  They are discussing growth hormone therapy, but no one knows what, if anything, might re-trigger the tumors.

I saw Serene at my family reunion last Aug, and she was a bright, happy child, albeit exactly the same size as her  2-&-1/2-years-younger sister.  Yet even then my cousin was saying that she was only being given a 50-50 chance to live out the year, since no one else ever had.  Now that she has gotten this far no one knows what her prognosis is.

So, to repeat Geoff's words: treasure every day on this mortal coil, or as Warren Z. put it, enjoy every sandwich.

[ggould]

It'd been precisely 2 years since I first posted this bit of sad news, but there's a pretty amazing story here.  Spoke yesterday with my cousin, and Serene just turned 7.  She has now out-lived every single other human being ever diagnosed with this extremely rare condition, and as such is the object of even more determined medical inquiry.

After 2 surgical attempts to remove what parts of the tumors were operable (read 'not much'), and some pharma & radiation regimens, the tumors stopped growing in the areas that were most seriously life threatening.  She regained her motor controls and has since maintained a perfectly normal psycho-social developmental path.  However, the tumors have completely wiped out her pituitary gland & she has completely stopped growing physically.  Her doctors (& researchers), having never had a patient survive this long, are not terribly sure what to do with her.  They are discussing growth hormone therapy, but no one knows what, if anything, might re-trigger the tumors.

I saw Serene at my family reunion last Aug, and she was a bright, happy child, albeit exactly the same size as her  2-&-1/2-years-younger sister.  Yet even then my cousin was saying that she was only being given a 50-50 chance to live out the year, since no one else ever had.  Now that she has gotten this far no one knows what her prognosis is.

So, to repeat Geoff's words: treasure every day on this mortal coil, or as Warren Z. put it, enjoy every sandwich.

Just as we treasure every day, we also rejoice in every piece of good news.  I hesitated to read this message, fearing the worst, only to find some hope.  Serene is still with her family.

[urth]

Wow--how truly amazing. Like Geoff, I approached this thread with a bit of dread, but am glad I read on. However, the tearjerker warning still applies--I got a little misty after reading Mark's update. I would add some sort of encouragement, but I have a feeling it's not necessary--you and your family already so obviously get it. Enjoy every sandwich, and treasure every moment.
peace,
Jim

[Alicat]

A reminder to treasure our health and abilities every day.