leukemia Diagnosis & Joey: Part 2

 (click to read part 1) 

Still Sunday 8/22 – Sometime Later in the Afternoon

After two hours in the ambulance, we arrive at the Medical University of South Carolina Children’s Hospital.  I honestly don’t remember much about that arrival, except the greeting by the nurses on the floor.  They were expecting us.  It was clear they knew of our situation and couldn’t have been more loving.  They put us in a room right away, all smiles and tried to make us feel comfortable.  A very young doctor, who was on call, came in the room.  He explained they were going to give Joe a transfusion of platelets and do a bone marrow test.  This results would give us a definitive diagnosis. 

Everything is such a blur to me.  My husband wasn’t even on a plane yet and I was on my own.  I promise I am a strong Mom, and obviously went through the motions and did what I was supposed to do.   Unfortunately, I don’t remember the details.  Deep inside, I knew already that my biggest fear from ten years before that had come true.  When they had given me both options the day before, I knew.   But you have to be hopeful – right?  Maybe it wasn’t leukemia!

He was taken to the OR for a bone marrow test,  but we would not get the results until the following morning.  Freddy didn’t get there until late that night, but it was perfect timing.  Joey had just gotten back to the room and I was grateful to have somebody to help hold me up.   Maybe exhale a little bit.  God was doing a great job, but I needed a physical presence.

Meanwhile … Christine’s View on Sunday  8/22 (Christine is bold and italicized)

I had been visiting my old sleepaway camp up in the heart of the Adirondacks all weekend and had no cell phone service.  We were in the car and I remember watching my phone waiting to get service.    I needed to find out how Joey was doing.   

I was in the car with my oldest friend from camp, Robin.  When I finally got service, I made a phone call and found out that my mom was at a hospital in South Carolina with Joey.  They were determining whether he had a blood platelet disorder or leukemia diagnosis.  Honestly, I don’t even remember when I got the official news that he had cancer, or who gave me that news.  Either way, I was a wreck, and the rest of this story is a bit of a blur in my memory. 

My friend lives in Stamford and I had to drop her off at her house.  While I was there I got on the computer and bought myself a plane ticket to an airport in Northern Virginia. The plan was to fly to Virginia and my sister would leave the University of Maryland at the right time to pick me up and we would drive to North Carolina together.  Our family needed help. 

 The Actual leukemia Diagnosis – August 23, 2010

Early the next morning two new doctors came into the room.  Freddy remembers the woman doctor had tears in her eyes, but I couldn’t see through my own.  She asked us to step into a conference room while a nurse stayed with Joey.  That was the moment I lost it.  I sobbed hysterically in the bathroom for about three minutes and I picked myself up by my big girl pants and went into Mom mode.

I knew at that point it had to be the worst news.  The doctor told us that it was as they feared; the diagnosis was leukemia.  We took the news, let a few more tears out and had to get our shit together real fast.  I called our pediatrician first and then cried to our pastor asking for prayers.  The doctor got us an appointment with the head oncologist at Columbia Presbyterian and Father Joe said he would add us on to the prayer list at church.   Doctor – check.  Prayers – check.

Back To Christine

I have absolutely zero recollection of the plane ride.  Don’t remember what airline I flew, from what airport I flew, into what airport I landed…nothing.  What I do remember is getting in my sister’s car, hugging her, and then began a very long sobbing session as we got on the road to NC. 

A few short minutes into that ride, Roberta got pulled over.  We were both still in full-on hysterics, snot, tears, and all, and the cop tells Roberta that she had been going something like 6 miles per hour over the speed limit.

Through our tears, we apologized and explained what was happening, and he couldn’t have cared less.  He gave her a ticket, which ended up costing Roberta hundreds of dollars.  (Virginia State Troopers are the worst.)  Thankfully that is the one story I have of people being insensitive in this situation.  I don’t remember much about getting to NC because everything happened so quickly.  

Getting Our Shit Together

We could have stayed at this hospital,  but it would have been a problem with insurance and logistically incomprehensible.  So Freddy and I started looking into medivac and were told it had to be extenuating circumstances for insurance to cover it.  This did not fall under that category.  How could a leukemia diagnosis 1000 miles from home not be extenuating?  I guess this never happened to any of the assholes making that decision, but we had to get out of there.

The next option was to take him home ourselves in our car.  That would be our decision.  The hospital gave him more platelets, put him on an antibiotic and said drive straight to New York.  We had to sign all kinds of papers to take him with us since it wasn’t recommended, but they completely understood that I could not be in South Carolina for that long with no support and no insurance.  I had to get him home.

Doctor’s Orders and the Ride Home

If we got into an accident, we had to find the closest major children’s hospital.  Joey’s platelets were questionable and he could bleed out if anything happened.  We were given a list of a few hospitals along the route and with hugs from nurses, we were on our way.  Meanwhile, Freddy had a rental car that he got from the airport and my brother had our car because I rode in the ambulance.  We planned to meet my brother for the exchange at Myrtle Beach Airport and race back to New York.

When we got to the airport,  my sister in law, Marie, gave me a glow in the dark rosary.   She said she just had it blessed by the priest at Our Lady of the Sea Church in North Myrtle.  My daughters were already there and Christine, Freddy, Joey and I got in the car and started the long drive back.  Roberta stayed behind to be with Bella and help clean up and close the condo.

Christine and Freddy took turns driving home.  I wasn’t capable of helping.  I took a Xanax and laid in the back with Joey while he slept, praying with my new rosary that this was all a mistake. Hoping this diagnosis was a bad dream.

Tuesday, August 24, 2010 – Back in New York

We arrived at Columbia Presbyterian/Morgan Stanley Children’s Hospital at 7 am.  We had to wait in the lobby until the doctor’s office opened at 8 am.  I couldn’t understand that because somebody with a leukemia diagnosis can’t be near anyone contagious.  Why else would all these people be waiting, unless they were sick?   I took deep breaths and covered my child’s face. 

I told them a doctor was supposed to be here waiting for us, but they don’t care.  At that moment, being calm was not a virtue of mine.  It may have been 10 minutes, but it felt like hours.  We finally went upstairs,  met the doctor on call and were shown to the room, a.k.a the clinic, where Joey would spend a good amount of time over the next 2+ years.

They put us in a corner and turned the chair so we didn’t see what was around us.  Behind us was a room full of other kids, getting their chemo treatments for whatever cancer they had.  I guess that would be overwhelming to see when you are already overwhelmed by what the fuck is going on here and how did this happen?  It’s only Tuesday, around 9 am in the morning.

Again, they take his blood – but you know what?  This time a beautiful nurse, Maria, put in the needle and Joey didn’t flinch.  I knew right away that I was in the right place. She did such a great job and my little boy was comfortable.  Then we met the woman who would be his doctor…Dr. Jennifer Levine.  This was the beginning of the 3rd longest day of my life.

The REAL Leukemia Shit Begins

We went from the clinic to what would be our home for the next 5 weeks.  After being settled in and prepped, we went to a meeting room by the ORs.  This is where we met with the surgeons.  They were going to do another bone marrow and put in a pic line for future chemo treatments.

We were able to be with him while they gave him a sedative.  After he was asleep, they told Freddy and I that we had to leave and go to the waiting room. That was the first of too many times.  When we left that room, I remember feeling like I was walking up this mile-long weird hallway, not having any concept as to what was going on around me.  The nightmare kept continuing and I didn’t know where I was going. Did my son really just get a leukemia diagnosis?

On an aside: I never left his side during any surgeries or procedures until he was sound asleep.  I will tell you that is something I never got used to.  He was always a trooper, but every time they knocked him out, I felt like I was watching him die.  It was completely out of fear, but I had to wonder … what if he never woke up?*

An Angel Appears

As we are walking past the waiting room that I had no intention of going in,  I look over and see my girlfriend, Joanie.  She was just sitting there all by herself.  I don’t know how she knew where to find us or how she got in there, but there she was.  For some reason, that is a picture and a feeling that has always stood out for me.  I am pretty sure I fell into her arms and was so grateful to see her at that moment.  I am getting choked up as I write this part of the story.   It happens every time I try to talk about how much that meant to me.

I can’t explain it, but that was a defining moment for me.  Here I was surrounded by my mother, my in-laws, Christine and Freddy, but that was when I could let out some weakness.   I needed my friend.

 Christine: I remember meeting doctors, waiting, meeting nurses, waiting some more, getting coffee and crappy food of some kind- and I remember Joanie Tippett being there, unbeknownst to us. She had taken it upon herself to be there for my Mom, and as I type this I am crying as I think about her friendship and kindness. 

Hours Later

The surgery went well (at least we thought it had) and we are bringing Joey back up in the room to begin quarantine.  We got sheets for the couch/bed for me and made ourselves at home.  What is it going to be like to be contained in a single room for the next 5 weeks? 

 Part 3 right here – Love and Quarantine: The Story Continues after the leukemia diagnosis.

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On an aside …  At first,  I couldn’t understand the glow in the dark rosary,  but I figured it out the first time I went to sleep without it.  One night in the hospital, I reached for my neck to clutch the cross and pray and realized it wasn’t there.   I jumped up in a panic and there it was glowing in the dark – easy for me to find.   God was showing me the light.

Wishing all of you and your families lots of love and good health and please pray for those who need healing.

Much Love Always,

Sandy