We know the foe

Posted by Sid

In one corner… the challenger, pinealoblastoma, cancer of the pineal gland in the brain.  It is a rare cancer; it is considered aggressive.  It is capable of spreading, but for some reason it usually does not.  You can Google it, and you’ll find that some call it pineoblastoma—it appears to be the same thing.  You’ll also find lots of outdated or just wrong information.

In the other corner… the defender, Sidney L. Gaskins, III, also aggressive in his own way, and ready for a fight.  In pre-match interviews, he has said he’s not just fighting for himself; he’s fighting for lots of other things and other people… he has a lot to fight for.

The date of the bout has not yet been scheduled.  It will be at least a month away.  For one thing, Sidney has been reduced to featherweight class, and needs some time to bulk back up to middleweight.  Also, the venue has not been announced; it’s possible he’ll have to travel to fight.

Scouting reports are that the challenger has been known to fight dirty, and this is of no small concern.  Expect Sidney to come out strong with a series of very hard (and tiring) punches at the beginning, though the exact game plan has not yet been decided.

Sidney, on the other hand, has his own advantages.  He is a personal friend of the Referee, and has a tremendous network of others applying pressure.  The Referee ultimately will decide, and He is known for His wise and fair decisions, but He has a history of taking into account the “heart” of the fighter.  For this reason, Sidney and his team are strangely confident.

For those of you unfamiliar with boxing, this probably makes no sense whatsoever—you might have to ask someone.  Sorry.

He’s home from hospital — Take 3

Today we brought Sidney home from the hospital for the third time in 3 weeks.  I am tired but happy, and it is difficult to put words to all our thoughts and feelings.  I finally decided to just copy/paste my text updates to my church here to document this journey.

 

 6/15/16

Pray.

Temp is 100.4 with Tylenol every 4 hours, fast reaching recommended safe dosages of that.

Biggest concern is weakness.  He could not stand this morning.  I was not led to expect this as norm after surgery.  Waiting on call from doctor.  Pray they will be wise about solution.

Pray for me.  Did not sleep last night.  Have slept little since last Thurs, so am feeling the effects of unclear thinking.  I need to think clearly.

. . . .

6/15/16

Waiting on tests.  Still no sleep for either of us.  He is so
uncomfortable but still maintains hope and contentment.  He was so happy
when I washed his face at 4:30 this morn and helped him brush his teeth.
There is so much noise in hospital.

. . . .

 

6/16/16

Found out last night that he has lost 30 pounds.  That was a bad moment.
Sidney and I are still having sweet moments, laughs, good talks.  He spoke the best prayers last night, almost lulled me to sleep before his machine started alarming.
He is an amazing young man.

. . . . .

Got him off some beeping machines.  Had to wrangle and guard him a bit but finally got staff to get approval to stop steroids.   Sidney is pleased with that.
He is also on iv antibiotics now though his cultures have not grown anything yet.
Staff have been good kind with my mama bear mode and trying their best to work with my requests.  They will probably be happy to see me go.

. . . . .

Sidney is turning  a corner.  Still has not slept but he ate more today, fever
is coming down, and he wanted to walk to bathroom and he wanted to feed
himself and brush his own teeth —all things he was unable to do since 2nd
day post op.
He remains happy, content and hopeful, misses Lincoln and girls terribly.
He will say that this has been miserable for him but my son wears misery
beautifully.  He is a joy to be with and while I can’t say I don’t want this
all over quickly, I will say that we’ve had more good moments than bad.  My
desperate weak moments have been overshadowed by the joyful ones.
We don’t know what you all are praying for —- Sidney says your sleep
prayers are not working, so pray harder —-but clearly many prayers for us
are being answered.  Sidney says he feels so loved by so many.
Thank you for carrying us through.

. . . .

6/17/16

Well, Sidney is still trying to make it around that corner. He temp spikes up and down.  Doctor is adding another antibiotic today.  Dr. Wait is still not convinced Sidney has an infection, but the antibiotics will cover all bases in case bacteria does grow in the cultures.  Wait thinks it is a typical post-surgery fever – a way the body reacts to surgical invasion.

Sidney sat upright on side of bed and did neck stretches for 5 minutes this morn — such a small thing but he has been too weak to sit up long since surgery.  He never considered medicine before but now has quite an interest in oncology and pediatrics, especially making people laugh.  We talked with a St. Jude doctor today.  This reinforced his interest, especially when he heard St. Jude has the only proton beam radiation for children in the world.  He would love to see that.  His pathology still has not come back but we are confident that St. Jude is already reviewing his scans and blood tests and pushing for those pathology results.  My sister relieved me last night and I slept so I am ready to resume my long, busy but sweet nights with my boy.  We have had such sweet discussions.  This tumor has already changed the course of his life, and we both have great hope for a new future for Sidney that we never before imagined.

Doctor Wait will add Benadryl to  your prayers for sleep.  Let’s pray that together those 2 things work.  Also it would be encouraging if Sidney feels strong enough to sit on a shower chair today.  We miss everyone.

. . . .

6/18/16

As the steroids slowly leave his system, Sidney sleeps a bit more each night.  Often he does not realize how much he slept until I tell him the nurse came to check his vitals and he slept through it.
I thought I had him settled to sleep at 10:30 last night when he asked me to sit close, hold his hand so he could pray.  An hour later, his prayer was still going strong with no sign of winding down.  He prayed for many of you by name and in great detail.  His prayers have a storytelling flavor that have both of us laughing and crying.
He thanked Father for this trial because even though he has been exceedingly uncomfortable, he is also a “a happy camper” as Grandpa Louis used to say.  He is amazed at how God has worked to make him content even while he wants this to be over, happy and smiling and laughing even while feverish, aching and desperate for sleep.  His mind constantly wanders over all the people in his life who love and bless him.  And you, our church, are a huge part of that comfort and joy he feels so fortunate to have in his life.
Sidney feels that yesterday was a good day – he was able to sit up and more often.  He finally took a shower, narrating the whole experience and singing the whole time.  I coaxed him to walk down  a short hall and around a corner onto a kind of veranda.  We had to drag his iv stand but we felt sneaky and bold, taking off on our own a whole 70 feet and through a door to the outside without permission.  He sat upright in a chair and we ate a meal while outside air touched his skin and the birds sang.
He told me to say that he just crackled his own toes independently.  He is thrilled to not have to rely solely on me for that though he has enjoyed the five little piggies on his toes.

Sidney is getting 2 broad antibiotics and his fever is mostly down though it does still spike once a day.  But his returning strength and desire to do little things independently are the biggest indicators that he is feeling better.  He is eating well, important because he has at least 30 pounds he needs to regain.
He looks forward to today as Sid is coming down with Lincoln, Rachel and Prairie this morning.  Later this afternoon, Katie and Virginia will be here.  I expect this day’s hours will not crawl by so slowly for him.

Ordinary Days ?

Is it even possible to have ordinary days when you know your son is walking around with a tumor in his head ?

Yes, apparently, it is possible.  While there was a surreal quality at times, this past week was mostly solid, peaceful, even joyful.

We celebrated Sid’s birthday last Sunday, when we brought Sidney home from the hospital.  Dear friends came by with supper and pecan pie.

.

For me, the week developed a strange weightlessness.

Nothing was important.

Everything was important.

Sidney’s car not working and where college money would come from — Not important.

Bubbles – important.

.

.

Mom came over and ate supper.  She came bearing her birthday card, dependable as ever.

Important.

.

Half-finished interior painting?  Not important.

Lazy music.  Very important.

.

Memorial Day with friends –Yes!  Important!

.

Crazy girl – important.

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Goofy boy – important.

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Boy home from hospital – important.

.

Sid killed a snake in the basement.  This is a conundrum.

Not Important?  Important?

Imaginary Brave Tina shrugs nonchalantly and says cooly, “Sooooo not important.”

Real life Tina squealed and shuddered.  Repeatedly.  Her heart pounded out “Important.  Important.  Important.  Are there MORE snakes in the basement?  This is important, need-to-know information!”

My girls stared at me in bemusement, “Calm down, Mom.  It’s just a snake.” 

Rachel diligently researched the internet and we all argued about whether it was a copperhead.  It had fangs.  I shuddered as I typed that.  Rachel finally declared it a black rat snake.  That’s better than a copperhead.  But y’all . . .fangs !#!

On a less snaky note, there were interesting conversations around the house:

“That is the 10th time I’ve sneezed in 2 years!” -Prairie

“If I could run as fast as I sneeze, that would be awesome!  Because I heard how fast sneezing is . . . like 100 . . . miles or something.”  -Prairie

“Let me use this knife to cut my peach with my double vision.  I see 2 peaches.”  –Sidney

“Well, cutting it should be easy since you have 20 fingers.”  –Sid

“Dad, do you enjoy the long division of polynomials?”  — Sidney

Paying attention to our words — definitely important.

 

 

Falling

When the ER doctor walked in and said, “brain tumor”  — that was the moment my life dissolved and faded around me.  I felt it leave me, suddenly, gently, burning ashes floated away, the air bent and distorted.

Then the doctor explained the tumor has been in my son’s head for some time.  I looked at Sidney.  “I feel like Wile E. Coyote when he runs over the cliff and keeps running because he doesn’t yet realize that he no longer has solid foundation beneath him.  How long have we been running without knowing there was nothing beneath us?”

I always laughed at Wile E. Coyote.

Our family’s reality was built on air.

We were falling all along.  We just didn’t know it.

Now, we know.  Kind of Matrix-y.  I have new empathy for that character who preferred the comforting, unreal life of the Matrix to the uncertainty of reality outside the Matrix.

My 17-year-old son reacted to the doctor’s “brain tumor” in his typical analytical fashion.  Suddenly, several minor symptoms plaguing him for months made sense.

He became instant best buds with the EMS guys who transported him to a bigger hospital.  Because Sidney has never met a stranger and has to chat with everybody he meets.

I do the only thing I can do.

Take pictures.  Keep a record.

Write the story.

This is not the story I wanted to write for him.  For any of us.

But it is the one given to us.  We must live it.

The hero of our story is confident and grinning after his first brain surgery.  He spent a lot of his wait time in the hospital coming up with brain tumor jokes and witty brain surgery lines.

.

This week, I saw this quote on a wall . . .

I scoffed internally.  Right now, that sounds like something Pollyanna might say when Coldstone Creamery doesn’t have her favorite flavor.  I love rain.  Rain is beautiful.  It makes music, lulls to sleep or exhilarates when stormy.

My son’s brain tumor isn’t rain.  It is a tornado.  Try dancing in a tornado, Miss Pollyanna.  A tornado that bangs you around and won’t let you grab anything solid nor let you see where you will land.

While I  was bitterly taking down Pollyanna, a memory floated to the surface — Sid and I holding each other and slowly dancing while we waited the longest 2 hours of our lives, dancing desperately while waiting for our son who was behind an imposing door with an MRI machine.  A piano playing “It is Well with my Soul” strained through the speaker of Sid’s cell phone.

Well, well, score one for my imaginary Pollyanna.

People ask “How are you doing?”   I am falling.

I see the Genesis Fall with new eyes.  In my former reality, Adam and Eve fell, past tense, done deal.  But really, they just began the plummet.  They made the jump and all of us have been falling ever since, falling every moment.  I don’t speak of falling in a sinning-falling way, the angle Christians talk about so much, it is hackneyed and meaningless.  Falling is so much more, so much scarier.  Falling is powerlessness — no handholds, no ledges, no way to catch ourselves and slow or direct our descent.  We are utterly helpless and dependent on Mercy.  Every moment.  Even when we don’t recognize it.

I’ve been told to cling to the Father, but that analogy does not work for me this time.  Clinging requires too much fight, too much energy and focus.  I can’t cling and cook supper at the same time.  I can’t cling, while desperately cracking jokes to lighten the atmosphere and plan the grocery list and do laundry and homeschool.  I look at my son and my husband, who are not struggling to do this cling thing.  Rather, both of them seem to have rested into the falling without resistance.

So that is what I have come to — resting in the falling.  Without resistance.

With faith that we will fall safely into the Father’s hand.