Cake and icecream the night before surgery.

Back to the story of how we got here.  The first operation.  It was the morning of March 4, 2011. Up before the sun.  We had stayed up late spending time with our little one.  A very kind nurse, Katie,  had managed to get us a birthday cake and candles for him.  It was killing us that he never had his party…never blew out candles.  If wishes were ever in order, it’s now.     We carried our baby down to the O.R. prep room.  Questions. Lots of questions.  O.R. Nurse asked questions.  Anesthesiologist asked the same questions.  Someone else asked the same questions.  When did he last eat?  What medications is he taking? blah blah blah….  A nurse comes to take him.  He is screaming.  Clinging.  Gut wrenching.  Memories of the day he was taken for his open heart surgery.  Silent prayers.  God please watch over my baby.  God please don’t let this be cancer.  Please.

I felt surprisingly calm through most of the surgery.  Then suddenly I started to panic.  I felt like something terrible had happened.  I couldn’t breathe.  I had to know he was okay.  I had to see him.  There were so many loved ones there that day.  We took up an entire section of the lobby.  As we stood waiting and wondering I looked up to see Dr. Boydston coming through.  He didn’t see me, but I could tell that he was looking for me and Cullen.  He looked like the world had just landed on his shoulders.  My fears were confirmed in his eyes.  Something terrible had happened.  With tears in his eyes he began, “Guys, it’s a tumor.  It’s cancer.”  He broke down crying and said, “He’s one of the cutest kids I’ve ever seen.”  My legs became weak.  I didn’t hear another word he said.  What more did I need to hear?  The words ‘kids’ and ‘cancer’ should never have to be uttered in the same conversation.

As Lachlan woke from anesthesia we were so thankful to God that he appeared to be himself.  The surgery required dissection of his cerebellum.  The possible repercussions of that were dire.  Paralysis.  Mutism.  We have to thank God and Dr. Boydston for that.  Along our journey we have met many who were not so fortunate.  Our baby woke and spoke and smiled.

ICU, after surgery

The next day Oncologist, Dr. MacDonald, came to ICU to talk with us.  Good news.  Yes, it is cancer, but it is medulloblastoma which has an 80-85% cure rate.  He felt very optimistic.  There are a few genetic markers with medulloblastomas that you do not want.  As long as he does not have those his chances are good.  The tumor tissue is being studied and we will know that information in about seven to ten days.

He was in ICU for only two and a half days.  He left the hospital five days after surgery, only to return early the next morning via the E.R. with a fever of 103.8.  The next day he was taken for his second brain surgery.  The wound had a massive infection and was re-opened and cleaned.  The day after that I stepped out of the shower in the hospital room just in time to hear the nurse tell Cullen, “It’s MRSA.”  The words “Oh My God!” flew from my mouth.  My poor little one would be subjected to 21 days of extreme anti-biotics.  And now our focus turned from cancer to something more immediate.  If the infection got into his spinal fluid he could perish from meningitis or sepsis.  To make matters worse,  cerebral-spinal fluid was not being absorbed by his dura, the lining of the brain.  He would need another surgery, tonight, to install a shunt to empty fluid from the brain to a collection bag.  As Callum would say, ‘Seriously?’  Give me a minute.  Two ‘brain surgeries,’ in two days, by two different doctors.  We didn’t even get a chance to research these two doctors.  I research cereal!

Even a shunt can't stop this smile!

We were given one day of mental rest before the next bomb was dropped.  Monday, March 14th…. the diagnosis;  large cell anaplastic.  This was one of those ugly genetic markers we did not want.  Our chance of survival took quite a nosedive.  When the doctors left the room Cullen and I held each other and sobbed.  The only other time I had seen Cullen cry that hard was when his friend Brian was taken in a car accident.  Sorrow.  It is defined by my American Heritage dictionary as something suffered ‘mentally.’  What word defines what is felt in the body?  In the soul?  For the first time in many many days, my mind was blank.