Had this post been written last year, surely it would be much different than what it is now, written a year following. Even though a full year has passed, I remember the majority of this day like they are forever etched in my memory....the other portions are lost in a numb blur...
The five of us (Fred, my parents, William and I) walked the 6 blocks along 1st Avenue to MSKCC at 5:45am. It was weird to see the city in its early morning preparations....there were many delivery trucks pulled up to stores, everyone's sidewalk bilco doors were open to access the business's underground storage, there was minimal traffic and overall a dramatically different feel than the normal city bustle. It was also a frigid, windy morning.
William was starting to loose all patience by this point, after his all nighter with Poppie, he was not only over-tired but rightfully hungry (he had not been fed in seven hours, literally the longest he had ever gone without feeding). During the walk, he looked up at me a few times....you could sense fear in his eyes. You could tell he just knew something different was about to happen.
I felt numb emotionally and physically as I carried William up that street.
It was like the world was happening in slow motion, even though we were all walking so fast, if only in an attempt to keep warm.
After his all-nighter, William was clearly over-tired and rightfully hungry. He had not seen me since around 1am.
The hospital was a ghost town but there were the appropriate staff at the Day Hospital where we were to first check in. Right about then is when William just lost it.
He became completely inconsolable...in every aspect of the word. He screamed his little head off and just would not stop. He was incredibly tired and madly hungry....nothing else but to nurse and put himself to sleep was going to make him hungry by that point.
Honestly, it was one of the worst hours of my life.
I had this hysterical baby, he was getting everyone around him upset and un-nerved, my chest was throbbing with his every cry and on top of it all, I knew I would have to turn him over for this life-threatening surgery...all I could think to myself was, "this is not how this is all supposed to be...this entire situation is just wrong...wrong..."
After an hour and a half of hysterics and everyone trying everything possible, William finally settled down around 7:30. The little red maraca from that awesome toy store on Lex Ave saved the day!
Thankfully, William settled down and we had a few nice minutes before we had to turn him over. He enjoyed banging his hand on the tv while Sesame Street was playing in the pre-surgery room.
Anesthesia came at 7:45am and gave William a strong sedative. It started to make him a little sleepy looking, but before making it to the OR area, he was already perking up some so they gave him an additional dose. Dr. LaQuaglia, the surgeon, took William from my arms and carried him in the OR.
I could barely get the words out, "Please take good care of him."
7:50 - William placed under general anesthesia for preliminary procedures, prepping, catherization, etc
9:10 – Dr. LaQuaglia’s surgery officially began
Our team of 6 anxiously sat in the surgery waiting area, keeping a close eye on the surgical concierge who rotated through the families to update on each patient's surgery. We received an update once every two hours.
Our first update was around 10am. Everything was going well and as expected. No concerns.
At 11:30, Fred and I toured NY Presbyterian's PICU with Meredith, the Nueroblastoma team's social worker. We saw where William would be transferred and a mini-tour of the amenities of one of the top hospitals in the country.
We arrived back to "Team William" anxious to share we missed the noon update from the OR. Word was, all was going well. Dr. LaQuaglia was in the upper chest area – where he decided to begin.
Around 1:30 I received call on my cell phone from surgical concierge saying she would down to meet with us in 15-20 minutes. We were all very nervous and anxiously awaiting every lab coat that came around the corner. 45 minutes later we went to the concierge desk to ask for Maureen (the concierge who had just called me...needless to say, we later nicknamed her, The Nutcase). She was nowhere to be found - lovely.
Another 15 minutes of torturous waiting and I decided to call back the number that had called my cell. I was so worried and sick to my stomach, I couldn't even talk.
Fred proceeded to have the most bizarre phone conversation with "The Nutcase".... all the while we could see her from across the room talking to him. She explained to us “hospital time…where 15 minutes really means 30 minutes or more…so there was no reason for us to worry.”
I guess Maureen has never been on the side as a patient's family member waiting while their loved one is in a major surgery, none the less a 9-month old's parent waiting while a major tumor was being removed....
Despite the near anxiety-attack we were going to be given bad news, all reports from the OR continued to be good, with everything going as expected. We were reminded by Maureen...and the concierge who took over coverage for the next shift....it was just going to be a long surgery, requiring a lot of time to slowly remove the tumor.... bit by it.
At 3:30, I checked the time and re-calculated William's time in surgery...8 hours down...and counting. Around 3:45, my cell rang. It was the OR nurse saying all was going well and they were beginning to close him up. The numbness came back as I processed what was being said to me.
Suddenly, Dr. LaQuaglia got on the phone and said, “All is well. The tumor is out. We are closing him up. I will meet with you soon. Good-bye.”
Never have I ever had such a most wonderful one-sided conversation!
At 4:00 we headed up to the 6th floor and were brought to a surgical consultation room to meet with Dr. LaQuaglia when he was ready. We waited....and waited.....and waited..... (again, on hospital time, I guess)
5:30 – We were informed the transport team arrived and were meeting with Dr. LaQuaglia.
A while later, Dr. LaQuaglia came to our packed little consultation room. All six of us were crowded in there. He looked exhausted and calmly share the news – everything went smoothly, he felt as though he was able to remove the entire tumor and everything that looked suspicious. He could not feel a mass or see any sign of disease in the liver – but took a wedge biopsy, as discussed.
(breathe, Mommy....continue to breathe)
Dr. LaQuaglia ended up removing many lymph nodes around the tumor area and also a grouping around the aorta. He decided it was not needed to put in an additional central line. William's blood loss was minimal. He received two transfusions during surgery. William remained intubated on the ventilator, had a chest tube in the left lobe, a foley catheter and an NG tube to decompress and suction his stomach.
Through the conversation, I literally had to remind myself to breathe. I could barely look at the doctor, none the less get a thought out. At the end of the conversation, I tapped Fred. He thanked Dr. LaQuaglia for all he had done for William. Dr. LaQuaglia just pointed upwards to the heavens, shook our hands and left.
Within minutes, Team William pulled out their phones and were texting the good news. I'll never forget the sight of the two grandmothers texting away....seriously, at that time, I was a texting minimalist and there they were!
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