When Time Stood Still (Pt. 4 of 5)

Without any doubt, May 2nd, was our hardest day.  Funny I should say that considering it was Mac who was sedated, cut open (again), and swollen beyond the point of recognition.  Wait…that isn’t funny at all!

We had another fun-filled morning after another NPO after midnight.  Have you ever tried to reason with an infant as to why they are not allowed to drink or eat for several hours?  Let me tell you, it’s equal to the ninth level of hell.  We know beyond a shadow of a doubt that our son is tired, thirsty, and hungry.  It is our job as parents to provide him  with the basics of comfortable living and we knowingly have to betray this special trust he has in us to provide him with these necessities and let him be tired.  Let him be thirsty.  And yes, let him be hungry.  Oh, Mac.  I bet if given the opportunity you would trade your parents in a hot minute.  I can’t say that I’d blame ya.

Again, we find ourselves walking down a long hallway with humming, white lights.  Again we are surrounded by the quietness and vacantness that has become a part of our seemingly surreal but real life.  Again, we hand our baby boy over to someone whom we’ve never met, never spoken to,  and trust they know the magnitude and vulnerability of this simplistic action.  We are broken, yet, again.

As Mac was taken back, we were consulted in regards to the procedure(s), statistics of infection, risks of anesthesia, and so on.  I am embarrassed to admit I do not remember the surgeon’s name (you start to lose track after a certain point) who spoke with us, however, I must admit that he was the only surgeon who spoke in regards to “statistics mean nothing when it is your child.  I can tell you even with mortality rates in relation to anesthesia as low as 0.2%, if it’s your child, it is 100%.”  Finally, some in-your-face honesty.  Some humanity. #thisguydeservesaraise

Mac was scheduled for a bone marrow biopsy and an implant of a Broviac Central Line. When speaking to Dr. Edwards* I was told not to be concerned because the implantation of a central line was not a “real” operation because it is not performed in an operating room.  Hmmm.  “Not a “real” operation?  I’m pretty sure you are sedating our child and cutting him open.  I don’t care if you do that in the trunk of your car.  It’s an operation.  It isn’t the room that classifies whether or not it’s an “operation.””  Obviously, Dr. Edwards* failed Bed Side Manner 101.  Idiot.

So, there Ricky and I were…sitting and waiting for Mac to come out of surgery.  This abnormality of waiting was becoming strangely normal.  We are accustomed to having two curtain monkeys (our children) crawling all over us so these moments of stillness were odd to say the least.  As we were waiting for the doctors to come out to advise us of Mac’s condition, Pastor Lawrence Phipps came into the waiting room to visit us.  Let me just say that even though I have L-O-V-E-D Vaughn Forest Church since THE VERY FIRST time I stepped inside their doors, I had never had the privilege of meeting this smooth-talker of my One True King.  So, as any good southern girl would do, I didn’t say a word to him…I recognized him, walked up to him, hugged him, cried on him, and after wiping my tear and snot from his sleeve, I introduced him to my husband.  Any of you who know my husband, know he claims to not be a “hugger” (don’t worry, Ms. B and I are working fervently to change this), so maybe Pastor Phipps sensed this.  After Ricky extended his hand Pastor Phipps pulled him in, hugged him, and didn’t let go.  God bless hugs, Mr. Phipps, and my husband. This moment will forever gladden my heart.

So, time passed and our fighter made his way out of surgery just fine (was there any doubt?!).  They let us meet him in the hallway before they transported him up to our room.  His cheeks were so rosy.  He looked so sweet (and stoned–let’s be honest).  This look of sweetness would pass.

Up at our room, we held Mac…again, without ceasing.  Pastor Phipps prayed for Mac, gave us his personal cell phone (holla!), and left us feeling revived.  Shortly after he left, my cousin Becky and aunt Carolyn came to visit.  They distracted me, which I was thankful for, however, during their visit, we noticed Mac was becoming VERY red and VERY swollen.  They prayed with us and blessed us with familial love. #ourfamilyandfriendsrock (this is your clue to check out the hashtag #ourfamilyandfriendsrock on Instagram).

As the hours passed, Mac seemed to be…well…there…physically present, and nothing more.  He was no longer rosy with cuteness but red with desperation.  He was burning to the touch, soaking sweat through our clothes as we would hold him.  The area around his lips were white from his skin being so taut, his ID bracelets had to be removed as they were cutting the circulation to his extremities, his sweet little fingers and toes could not bend because they were so swollen.  Our poor baby boy. <God, please.  Please help him.  Please help our little boy.>

This breaks my mommy heart (post biopsy & implant / pre chemo)

This breaks my mommy heart (post biopsy & implant / pre chemo)

 

In the late afternoon, we got another visit from the oncology team.  The initial bone marrow results showed “negative” but official results would take 5-7 days.  We went through all the scans–PET, CT, Full-Skeletal, prognosis, blah, blah, blah.  “We will start chemotherapy today.”

It is funny (“funny” as in “not really that funny but I really don’t know how else to put it) how for the past five days time ceased to move; yet in that moment, when hearing the words, “we will start chemotherapy today,”  it immediately hit fast-forward.  “Chemotherapy?  Already? So soon?”  Well, the answers (as you can imagine) went something like, “Yes.  Yes, and yes.”

Chemotherapy.  I don’t know what I was thinking.  I had visions of cold rooms, long-dark tunnels, biohazard signs, and hazmat suits–undoubtedly a by-product of watching too many Date-Line episodes as a pre-adolescent.  Chemotherapy turned out to be a sweet nurse carrying a syringe of vinblastine (VBL) 6 mg/m2i.v. bolus and a willingness to let us take pictures (as long as her face was not included).  Chemotherapy lasted about 30.8 seconds.  Maybe even less.

First Chemo Treatment 2/May/2013

First Chemo Treatment 2/May/2013

The moral of the story:  even though this was the emotionally hardest of our days in the hospital, it was also the most rewarding.  It was a day full of grief and joy.  Pain and healing.  Loneliness and company.  Around 10 p.m. that night, Mac pulled another fast one.  He was suddenly  looking healthy, acting healthy, and was even giving us a raspy laugh.  How is this even possible…doesn’t this kid know what he looked like just a couple of hours ago?  Well, this may sound familiar, but in case you haven’t caught on, Mac’s a Fighter ❤

*Name has been changed to protect identity.

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2 thoughts on “When Time Stood Still (Pt. 4 of 5)

  1. I am bestest friends with Mary Merrill (howard)…my son has been through hell and back (3 open heart surgeries and strokes) and to see him today you would never know. We have no idea what his future will hold, but we are greatful for everyday that it iis not the first thing on our mind. Hospital life…sucks! But with a great group of friends and family you will make you way through. Thinking of you during this very difficult time! If you ever want someone to vent to’ please have Mary put us in touch!!!

    • Family, friends, and even complete strangers (yourself included) have undoubtedly help us through this difficult time in our lives. The love, encouragement, and support have been overwhelming to say the least. Once we are settled in Boston, I would love to have Mary put us in contact. Thank you for reaching out.

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